Category: Chronic Illness

Non-Invasive Vagus Nerve Stimulator Device: A Breakthrough In Medical Technology
Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Mental Illness · Self-Care

Non-Invasive Vagus Nerve Stimulator Device: A Breakthrough In Medical Technology

Looking for the Light9 Comments

The FDA approved the Vagus Nerve Stimulator in 2005 and I was fortunate enough to get approval for it. It’s implanted in my upper left chest, looks like a pacemaker, and the lead wires attach to my Vagus Nerve. I prayed the device would deliver a miracle for my Bipolar Disorder but that was not the case. After several years of adjusting the stimulation, my doctor and I made the decision to turn it off. Almost 20 years later it has become painful and I plan to have it removed this Fall.

The technology has advanced with implants showing better results. I don’t plan to have another implanted but I did find the research on non-invasive VNS devices very interesting. I am researching several brands and will purchase one that vets out. What I find most interesting is the non-invasive devices can help with many other conditions like anxiety, pain, stress, and even migraines. I could use help in many of the areas they tout.

———————

Last updated on July 24th, 2024 at 11:22 am

The human body is a complex and intricate system, with various nerves and pathways working in tandem to maintain optimal health. Among these nerves, the vagus nerve stands out as a key player in regulating numerous bodily functions. Thanks to recent advancements in medical technology, a non-invasive vagus nerve stimulation device has emerged as a breakthrough in the field of medicine. This device has the potential to revolutionize the treatment of various health conditions and enhance overall well-being.

Understanding the Vagus Nerve and Its Functions

The vagus nerve, also known as the tenth cranial nerve, is the longest and most vital nerve in the human body. It extends from the brainstem to various organs, including the heart, lungs, and gastrointestinal tract. The vagus nerve plays a crucial role in regulating essential bodily functions such as heart rate, digestion, and respiratory function.

But what exactly is the vagus nerve, and how does it carry out its functions? Let’s dive deeper into the fascinating world of this remarkable nerve.

The Role of the Vagus Nerve in the Human Body

With its extensive reach and influence, the vagus nerve acts as a communication channel between the brain and various organs. It carries signals that control the parasympathetic nervous system, which is responsible for rest and digestion functions. This means that the vagus nerve helps to slow down heart rate, stimulate digestion, and promote relaxation.

But that’s not all. The vagus nerve also plays a role in modulating inflammation and immune responses. It has been found to have anti-inflammatory effects, helping to regulate the body’s immune system and reduce excessive inflammation. This connection between the vagus nerve and the immune system opens up new possibilities for treating inflammatory diseases.

The Connection Between the Vagus Nerve and Various Health Conditions

Research has shown that abnormalities in vagal nerve activity can contribute to the development and progression of various health conditions. For example, chronic pain has been linked to dysfunctional vagus nerve signaling. By understanding and targeting the vagus nerve, researchers hope to develop new treatments for chronic pain that go beyond traditional pain medications.

Depression and anxiety disorders are also closely tied to vagal nerve activity. Studies have found that stimulating the vagus nerve through techniques like vagus nerve stimulation (VNS) can have a positive impact on mood and reduce symptoms of depression and anxiety. This has led to the development of VNS as a potential treatment option for individuals who do not respond to traditional antidepressant medications.

Migraines, too, have been linked to vagal nerve dysfunction. The vagus nerve is involved in pain modulation, and abnormalities in its function can contribute to the development of migraines. By understanding the role of the vagus nerve in migraines, researchers are exploring new ways to prevent and treat these debilitating headaches.

Furthermore, the vagus nerve’s influence extends to inflammatory diseases. Inflammatory bowel disease, rheumatoid arthritis, and other conditions characterized by excessive inflammation have been associated with vagal nerve dysfunction. This connection has sparked interest in developing therapies that target the vagus nerve to regulate inflammation and potentially provide relief for individuals with these conditions.

As we continue to unravel the mysteries of the vagus nerve, its importance in maintaining overall health and well-being becomes increasingly evident. By understanding its functions and connections to various health conditions, researchers are paving the way for innovative treatment approaches that could improve the lives of millions.

The Evolution of Vagus Nerve Stimulation (VNS) Therapy

Vagus nerve stimulation (VNS) therapy has been used for decades as a treatment option for certain conditions. Traditional VNS involves the implantation of a device that delivers electrical impulses directly to the vagus nerve. While effective in some cases, this invasive approach has limitations and potential complications, leading researchers to explore alternative methods.

The Traditional Approach to VNS

In the past, VNS therapy involved the surgical implantation of a device that connects to the vagus nerve. This device typically delivers mild electrical impulses to modulate the nerve’s activity. However, the invasiveness of this method poses risks such as infection, nerve damage, and complications related to device placement.

Despite these risks, the traditional approach to VNS has shown promising results in the treatment of epilepsy and depression. Studies have demonstrated a reduction in seizure frequency and improved mood in patients who underwent VNS therapy. However, the limitations and challenges associated with invasive VNS have prompted researchers to explore less invasive alternatives.

The Limitations and Challenges of Invasive VNS

Despite its positive outcomes in certain cases, invasive VNS therapy presents several challenges. The necessity for surgical implantation limits its accessibility and increases the potential for complications. Additionally, adjusting the stimulation parameters requires medical intervention, making it less flexible for patients who may benefit from personalized treatment regimens.

Furthermore, the invasiveness of the traditional VNS approach may deter some patients from seeking treatment. The fear of surgery and the associated risks can be a significant barrier, especially for individuals with comorbidities or those who are more risk-averse. As a result, researchers have been actively exploring non-invasive or minimally invasive alternatives to VNS therapy.

One such alternative is transcutaneous VNS, which involves the application of electrical stimulation to the skin overlying the vagus nerve. This non-invasive approach eliminates the need for surgical implantation, reducing the associated risks and complications. Transcutaneous VNS has shown promising results in the treatment of various conditions, including migraine, depression, and chronic pain.

Another emerging technique is minimally invasive VNS, which utilizes a smaller, less invasive device for nerve stimulation. This approach involves the placement of a tiny electrode near the vagus nerve, allowing for targeted stimulation without the need for extensive surgery. Minimally invasive VNS offers a middle ground between traditional invasive VNS and non-invasive alternatives, providing a balance between effectiveness and safety.

As researchers continue to explore and refine VNS therapy, advancements in technology and medical understanding are driving the evolution of this treatment modality. The development of novel devices, improved stimulation parameters, and a better understanding of the underlying mechanisms are all contributing to the expansion of VNS therapy options.

In conclusion, while traditional VNS therapy has been a valuable treatment option for certain conditions, the limitations and potential complications associated with invasive approaches have prompted researchers to explore alternative methods. Non-invasive and minimally invasive techniques are emerging as promising alternatives, offering improved accessibility, reduced risks, and increased flexibility for personalized treatment. As the field of VNS therapy continues to evolve, patients can look forward to more effective and safer options for managing their conditions.

The Advent of Non-Invasive Vagus Nerve Stimulation (nVNS)

Non-invasive vagus nerve stimulation (nVNS) has emerged as an exciting alternative to traditional VNS therapy. This innovation allows for the stimulation of the vagus nerve without the need for surgical procedures or implantation.

The vagus nerve, also known as the “wandering nerve,” is the longest cranial nerve in the body. It plays a crucial role in regulating various bodily functions, including heart rate, digestion, and inflammation. Traditionally, vagus nerve stimulation (VNS) has been used as a treatment option for conditions such as epilepsy and depression. However, the invasive nature of VNS therapy has limited its accessibility and acceptance.

nVNS offers a non-invasive solution to harness the therapeutic potential of the vagus nerve. By utilizing mild electrical stimulation, nVNS can activate the vagus nerve and modulate its activity, providing a promising avenue for the treatment of various health conditions.

The Science Behind nVNS

nVNS operates on the principle that mild electrical stimulation can activate the vagus nerve and modulate its activity. By placing electrodes on the skin over specific nerve pathways, nVNS devices deliver targeted electrical impulses, stimulating the vagus nerve indirectly. This non-invasive approach has shown promising results in clinical trials

Research has demonstrated that vagus nerve stimulation can have a profound impact on the body’s autonomic nervous system, which controls involuntary functions. By modulating the vagus nerve’s activity, nVNS can influence heart rate, blood pressure, and even the release of neurotransmitters in the brain.

Furthermore, studies have suggested that nVNS may have anti-inflammatory effects. Inflammation is a key component of many chronic diseases, and by reducing inflammation through vagus nerve stimulation, nVNS could potentially offer a novel therapeutic approach.

The precise mechanisms through which nVNS exerts its therapeutic effects are still being explored. However, the growing body of research indicates that this non-invasive technique holds great promise for the future of medical treatment.

The Design and Function of nVNS Devices

nVNS devices consist of a handheld stimulator with attached electrodes. When applied to specific areas, such as the neck or tragus, these devices deliver precisely calibrated electrical impulses. The stimulation triggers a response in the vagus nerve, which can have therapeutic effects on various health conditions.

One of the advantages of nVNS devices is their portability and ease of use. Patients can conveniently carry the handheld stimulator with them and apply the electrodes whenever needed. This flexibility allows for on-demand stimulation, enabling individuals to tailor their treatment according to their specific needs and symptoms.

Additionally, nVNS devices are designed to be user-friendly, with intuitive controls and adjustable settings. This ensures that patients can easily customize their stimulation parameters, optimizing the therapy’s effectiveness and comfort.

As the field of nVNS continues to advance, researchers and engineers are exploring innovative ways to enhance device design and functionality. Efforts are being made to develop smaller, more discreet devices that can be worn comfortably throughout the day, allowing for continuous vagus nerve stimulation without disrupting daily activities.

Moreover, advancements in technology are enabling the integration of nVNS devices with smartphone applications and wearable devices. This integration offers the potential for real-time monitoring and personalized treatment plans, further optimizing the therapeutic benefits of nVNS.

In conclusion, non-invasive vagus nerve stimulation (nVNS) represents a groundbreaking development in the field of medical treatment. By providing a non-surgical and easily accessible alternative to traditional VNS therapy, nVNS holds immense potential for improving the lives of individuals with various health conditions. With ongoing research and technological advancements, the future of nVNS looks promising, paving the way for a new era of personalized and effective medical interventions.

The Potential Health Benefits of nVNS

nVNS has the potential to offer significant health benefits across a range of conditions, opening up new possibilities for treatment and management.

With its ability to modulate the vagus nerve’s activity, nVNS holds promise in revolutionizing various areas of healthcare. From chronic pain management to mental health treatment, this innovative approach has garnered attention and sparked excitement among researchers and medical professionals alike.

The Impact of nVNS on Chronic Pain Management

Chronic pain is a widespread and challenging condition that can significantly impact a person’s quality of life. Traditional pain management approaches often involve pharmacological interventions, which may come with unwanted side effects and limited efficacy. However, studies have shown that nVNS can provide effective pain relief by modulating the vagus nerve’s activity.

The vagus nerve, a major component of the parasympathetic nervous system, plays a crucial role in pain perception and inflammation. By targeting this nerve through non-invasive nVNS, it is possible to reduce inflammation and alter pain perception, offering a non-pharmacological approach to pain management. This opens up new avenues for individuals suffering from chronic pain, providing them with a potential alternative or complementary treatment option.

nVNS and Mental Health: A New Frontier

Mental health disorders, including depression and anxiety, affect millions of people worldwide. While various treatment modalities exist, there is a constant need for innovative approaches that can enhance therapeutic outcomes and minimize side effects. nVNS has emerged as a potential game-changer in the field of mental health treatment.

Research has shown that nVNS can modulate the vagus nerve’s activity, influencing neurotransmitter release and mood-regulating pathways. By doing so, it offers a novel and non-invasive approach to mental health treatment. This exciting development has the potential to transform the lives of individuals struggling with mental health disorders, providing them with a new frontier of hope and possibilities.

Furthermore, the non-pharmacological nature of nVNS makes it an attractive option for individuals who may be hesitant or unable to tolerate traditional medication-based treatments. By harnessing the power of the vagus nerve, nVNS opens up a world of potential for personalized and targeted mental health interventions.

As research continues to unfold, the potential health benefits of nVNS become increasingly evident. From chronic pain management to mental health treatment, this innovative approach holds promise in revolutionizing the way we understand and address various health conditions. With its non-invasive nature and ability to modulate the vagus nerve’s activity, nVNS offers a glimpse into a future where personalized and effective treatments are within reach for individuals worldwide.

The Future of nVNS in Medical Technology

As the field of medical technology continues to advance, researchers are exploring additional applications and potential benefits of non-invasive vagus nerve stimulation (nVNS). This innovative therapy has shown promise in various areas of healthcare, and ongoing research is shedding light on its potential to revolutionize personalized medicine.

Ongoing Research and Potential New Applications

Researchers are actively investigating the effects of nVNS on various health conditions and exploring its potential to improve outcomes. One area of focus is epilepsy, a neurological disorder characterized by recurrent seizures. Preliminary studies have shown that nVNS may help reduce the frequency and severity of seizures in some patients, offering a new avenue for managing this challenging condition.

Another area of interest is migraines, debilitating headaches that can significantly impact a person’s quality of life. Early research suggests that nVNS may provide relief for migraine sufferers by modulating the activity of the trigeminal nerve, which is involved in the development of migraines. This non-invasive approach could offer a promising alternative or complement to existing treatments.

Inflammatory diseases, such as rheumatoid arthritis and Crohn’s disease, are also being explored as potential targets for nVNS therapy. These conditions involve an overactive immune response, leading to chronic inflammation and tissue damage. By stimulating the vagus nerve, nVNS may help regulate the immune system and reduce inflammation, offering a novel approach to managing these complex diseases.

Furthermore, researchers are even investigating the potential cognitive enhancement effects of nVNS. By stimulating the vagus nerve, nVNS may modulate brain activity and improve cognitive function. This could have implications for conditions such as Alzheimer’s disease and age-related cognitive decline, where maintaining cognitive abilities is crucial for maintaining independence and quality of life.

The Role of nVNS in Personalized Medicine

One of the most exciting aspects of nVNS is its potential to be tailored to individual patients. With adjustable settings and personalized parameters, nVNS therapy can be optimized to meet each person’s unique needs. This personalized approach has the potential to enhance treatment effectiveness and improve patient outcomes.

For example, the intensity and frequency of nVNS stimulation can be adjusted based on the severity of symptoms and individual response. This flexibility allows healthcare providers to fine-tune the therapy to achieve the best possible results for each patient. Additionally, the ability to remotely monitor and adjust nVNS devices further enhances the personalized nature of this therapy, allowing for real-time optimization and improved patient convenience.

Moreover, the integration of nVNS with other medical technologies holds promise for personalized medicine. By combining nVNS with wearable devices, such as smartwatches or biosensors, healthcare providers can gather real-time data on a patient’s physiological responses and customize nVNS therapy accordingly. This integration could lead to more precise and effective treatment strategies, tailored to the specific needs of each individual.

In conclusion, the emergence of non-invasive vagus nerve stimulation devices represents a breakthrough in medical technology. By harnessing the power of the vagus nerve, these devices offer new possibilities for the treatment and management of various health conditions. The potential benefits of nVNS in chronic pain management, mental health treatment, and other areas are particularly promising. As further research unfolds and technology continues to advance, the future of nVNS holds great potential for revolutionizing personalized medicine and improving the lives of countless individuals.

This is a huge breakthrough for so many people.

Melinda

Reference:

https://vagus.net/non-invasive-vagus-nerve-stimulation-device-a-breakthrough-in-medical-technology/#
10 Ways to Find Support When You Live Alone with Chronic Illness
Celebrate Life · Chronic Illness · Communicating · Health and Wellbeing · Medical · Men & Womens Health

10 Ways to Find Support When You Live Alone with Chronic Illness

Looking for the Light6 Comments

by Beth Ann Mayer

•••••

Medically Reviewed by:

Tiffany Taft, PsyD

Living alone with a chronic illness can make it hard to get support. Some may worry about burdening others or explaining their condition, but there are people who want to help.

Not all chronic conditions are apparent, and their “invisibility” can make asking for help a challenge.

People living alone may feel this most, without a partner, family, or roommates who understand their daily routines and consistent needs. 

If this describes you, you may find yourself with another task on your to-do list: finding the support you need.

Read on for tips on how to get your needs met, even when living alone with chronic illness.

1. First, know it’s OK to need help (and you’re not a burden)

People with chronic illness may be reluctant to seek help for several reasons.

“People don’t want to be a burden on others,” says Marzena Gieniusz, MD, an internist. “I hear this a lot in my practice, even when there are people willing, able, and happy to help available.”

Part of this involves cultural expectations and norms.

“Our culture places high emphasis on independence and autonomy,” says Rehan Aziz, MD, a psychiatrist. 

Sometimes the issue is communicating what you need.

“Many people with chronic illnesses also face the challenge of their conditions being ‘invisible,’ which can lead to misunderstandings about the severity of their needs,” says Clorinda Walley, president of Good Days.

Still others may simply prefer being alone.

“Living alone can provide a moment of solitude — a reprieve from the intensity of medical spaces and constant interactions with others,” says Gabriel Cartagena, PhD, a clinical psychologist. “Living alone can also provide individuals with space to pause, reflect, and process their thoughts and experiences.”

2. Reflect on your relationship to asking for help

Cartagena recommends starting with self-reflection as you embark on your journey to find the support you need.

You can ask yourself questions like:

  • Has it been uncomfortable for me to ask for help? If so, why?
  • What does it mean for me if I do ask for help?
  • What do I worry about losing if I ask for help?
  • What difficulties might I have if I don’t get the help I need right now?

This reflection can be a key first step to understand what it means to you to ask for help, and why you may feel reluctant to do so. 

Cartagena says the next question to ask yourself is: “Who do I feel I can trust?”

The answer may be a family member or friend. It may be challenging to ask, but you can try reframing your thoughts.

“People like to feel useful and will often be happy to be able to help in a practical way,” says Hannah Carmichael, the director of the Living Well Alone Project. 

3. Be specific about your needs

While people may be eager to help, they’ll likely look to you to hammer out the what, when, and how. The good news? You’ll be able to advocate for your actual needs.

“The more specific you can be, the easier you make it for others to help you,” Carmichael says. “This gives the person you’re asking much more certainty about exactly what you need and clarifies their role.”

For example, “Rather than ‘I’d really appreciate some help with a bit of shopping at some point,’ try, ‘Next Thursday, would you be able to drive me to the shopping center at 3 p.m., and stay with me while I pick up a couple of birthday presents?’” says Carmichael.

Carmichael suggests asking different people to help with different tasks. Think of assembling a village like a coach putting together a team — everyone has a unique skill set and availability. This step can also prevent overloading one person.

For instance, a person who loves cooking may be able to assist with meal prep. A friend who enjoys driving might be willing to give you a lift to the doctor. An assertive but tactful friend could be a good advocate for you in the emergency room.

Think of assembling a village like a coach putting together a team — everyone has a unique skill set and availability.

5. Build a village near your hometown

You may not have family and friends around who can help, or perhaps you’re looking for new connections.

“When you live alone, you don’t have anyone ‘on hand’ to keep you company,” Carmichael says. “That means that the responsibility is on you to find people to be friends with, and it’s also on you to grow and maintain those relationships.”

Here are some tips to get you started.

Look online

Online resources can help set you up for in-person social support.

“Look on Meetup [and] on local Facebook groups for activities taking place that don’t need you to travel too far from home,” Carmichael says. “You might be surprised at how much is going on.” 

Local notice boards at a library or community center may also spark ideas.

Keep an open mind

It can be beneficial to try something different. 

“You never know, that local talk on the history of bridges in your area might turn out to be a lot more interesting than you think, or at least, a chance to meet new people,” Carmichael says.

Get into a routine

One of the easiest ways to build new connections is to encounter the same people daily. It’s not always luck. 

“Try to walk the dog or go for a stroll at the same time each day, and see how quickly you start to spot familiar faces,” Carmichael says.

6. Look into community-based programs

You may have organizations within your community with people who have already volunteered to help.

“Some communities have volunteer programs that offer free assistance with tasks like grocery shopping, transportation, and home maintenance for individuals with chronic illnesses,” says Aziz.

Aziz recommends services like Meals on Wheels. However, the nonprofit generally serves people 60 and older. 

Local churches, mosques, synagogues, and other volunteer-based organizations may also have services accessible to people regardless of age. A healthcare professional can point you to organizations within your community.

7. Find support online

One of the benefits of living in the Digital Age is that it can connect you with people you might not normally meet. 

“Face-to-face interactions are great, but they’re not always possible when you’re living with a chronic illness,” says Carmichael. “There are some brilliantly friendly, supportive groups on Facebook, for example, if you take the time to look for them.”

Carmichael suggests searching for groups geared toward people with your condition or even hobbies and interests.

Aziz agrees that online groups can be a useful tool.

“Virtual support groups and forums can be valuable resources for connecting with others who share similar challenges and experiences,” Aziz says.

If you haven’t already, give Bezzy Communities a try.

8. Use delivery pharmacies 

Gieniusz says it can be a challenge to stay up to date with medications, which can be critical to managing a condition. Compounding matters, you may be using different pharmacies for different medicines.

“Using a delivery pharmacy to ensure medications are at your door and on time can help make managing chronic illness easier,” Gieniusz says.

Major pharmacies like Walgreens and CVS also offer delivery services. 

9. Let them know you value their help

Simple acknowledgments of someone’s efforts to help you can go a long way in community-building.

“It’s important because it not only shows recognition but also encourages a continued support network,” Walley says.

Carmichael agrees.

“Think about what you can offer in return so that the relationship feels more reciprocal,” Carmichael says. “Even if your condition means you won’t be able to help them with practical tasks, you could perhaps offer a cup of tea and a chat about something on their mind.”

Walley says thank you notes or simply saying or texting “Thank you” are often enough.

Simple acknowledgments of someone’s efforts to help you can go a long way in community-building.

10. Enlist help through national nonprofits 

National nonprofits can connect you with organizations in your area.

Some options include:

Aziz says you may also find help through organizations specific to your condition(s), like the American Chronic Pain Association and American Cancer Society. Some also offer support groups. 

Takeaway

Living alone with a chronic condition can be both practically and emotionally challenging.

Even if you can’t afford in-home aid, resources are available. 

From the wider community to national organizations, there are people out there who want to provide support. Sometimes, but not always, all it takes is asking.

Medically reviewed on March 20, 2024

5 Sources

These are some great ideas and many will take time but the payoff can make all the difference in your life.

Melinda

True Crime As True Lyme: Tick Bite Leads To Murder-Suicide
Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health · Mental Illness · Tick Borne Illnesses

True Crime As True Lyme: Tick Bite Leads To Murder-Suicide

Looking for the Light9 Comments

Tortured by Lyme disease, a young man killed his friend and himself. He is not alone.

by Mary Beth Pfeiffer, Trial Site News

For decades, Lyme disease physicians have seen a small share of late-stage patients with symptoms far beyond the physical ravages of a tick bite.

These patients, estimated to be 1 percent of chronic Lyme psychiatric cases, manifest brain disorders so intractable that they become violent, even homicidal.

Now, a new article in the science journal Heliyon validates these observations and reveals possible mechanisms driving them. It tells the horrific story of a 32-year-old man whose tickborne infection at age 14—one of several—went unrecognized until it was unresponsive to treatment.

Failed by short-course antibiotics that mainstream medical guidance swears by, he descended into substance abuse, as many chronic Lyme patients do, to ease his anxiety, depression, and physical pain. READ MORE  

A patient with psychiatric manifestations of Lyme depicted his pain in this painting. He would later commit suicide. (Photo by permission of Dr. Robert Bransfield.)

Mary Beth Pfeiffer is an investigative journalist and author of Lyme: The First Epidemic of Climate Change. 

(Note: The important work discussed in this article came about because the family trusted the Lyme Disease Biobank with this young man’s body. Furthermore, Bay Area Lyme Foundation funded this research. Click here to learn more about the biobank.)

I have never heard of the psychiatric manifestations of Lyme but can certainly understand it. When your body is invaded and attacked every minute causing severe pain in many areas of the body, understand the feeling of losing your mind. The Lyme Spirokeetes set up house in my brain, eating away at my memory, and balance and causing havoc on my entire body. No amount of pain medication can give relief, it’s non-stop. Thank goodness it’s a very small percentage of Lyme patients that are affected by Psychiatric Manifestations.

Melinda

What Science Says About the Link Between Fibromyalgia and Migraine Episodes
Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Self-Care

What Science Says About the Link Between Fibromyalgia and Migraine Episodes

Looking for the Light2 Comments

While it’s not yet fully understood, research shows a strong connection between fibromyalgia and migraine symptoms. 

In 2021, chronic pain affected over 51 adults in the United States alone. Over 17 million of those adults experienced debilitating chronic pain that restricted their daily activities.

Both fibromyalgia and migraine episodes can cause chronic pain that makes it difficult to function from day to day. And for people who have both conditions, research suggests that fibromyalgia may even make migraine symptoms worse and more frequent.

Below, we’ll explore what science says about the relationship between fibromyalgia and migraine, including what treatment options are available for both.

Is there a connection between fibromyalgia and migraine episodes?

Research shows that fibromyalgia and migraine often occur together and that fibromyalgia can affect the frequency and severity of migraine episodes in people who have both conditions.

The following studies demonstrated a connection: 

  • In one study from 2019, researchers found that migraine symptoms were twice as prevalent in people with fibromyalgia versus those without. And in study participants who experienced migraine episodes, the risk of fibromyalgia was up to 1.5 times higher.
  • A similar study found that over 30% of participants with migraine symptoms also had fibromyalgia, with the condition being more prevalent in those with chronic migraine and migraine episodes with auras.
  • Several studies also found that fibromyalgia may affect migraine frequency and severity. In one study from 2018, fibromyalgia was associated with higher headache severity and higher migraine-related disability.
  • Another study from that same year found that participants with both migraine and fibromyalgia experienced more frequent and painful migraine episodes, as well as lower quality of life.

Most of the studies on fibromyalgia and migraine don’t distinguish between different migraine types, such as complex or ocular migraine. However, some of the research does suggest that people with chronic migraine and migraine with aura may be more affected.

What’s happening in the brain when you have fibromyalgia?

Fibromyalgia is a chronic health condition that’s characterized by body-wide pain and tenderness, chronic fatigue, and difficulty sleeping.

Researchers aren’t entirely sure of what causes fibromyalgia, but evidence suggests that it affects the way the nerves of the brain receive and transmit information related to pain. Because of this, people with fibromyalgia appear to be more sensitive to pain than those without the condition.

What medications help with fibromyalgia and migraine episodes?

First-line treatment for fibromyalgia and migraine generally involves medications that reduce pain.

While there’s no cure for fibromyalgia, there are four medications commonly prescribed to help manage pain:

Research has shown that roughly a quarter of people living with fibromyalgia can find pain relief with these medications.

Migraine treatment also involves a combination of pain medications and other medications that may be helpful for reducing migraine frequency. Medications for migraine include both preventive and acute episode medications.

Preventive medications include:

Acute migraine episode medications include:

If you have both fibromyalgia and migraine, a combination of medications may help reduce your symptoms. However, you and your doctor will work closely together to decide which treatment options work best for you.

Alternative treatments for fibro pain and migraine episodes

Complementary and integrative treatments may also be helpful in reducing pain and improving the quality of life in people living with fibromyalgia and migraine episodes.

One review from 2020 ound that acupuncture was beneficial for reducing pain in people living with chronic pain conditions, including chronic migraine. And additional research suggests that acupuncture may also be helpful for reducing pain due to fibromyalgia.

In another review from 2019 researchers found that activities like yoga and tai chi appear to help reduce migraine frequency and severity. Research also suggests that activities like yoga may be helpful in reducing fibromyalgia pain and improving functioning and mood.

Other complementary treatments that may be helpful for chronic pain conditions like fibromyalgia and migraine include therapeutic massage, mindfulness, and certain supplements. However, researchers are still exploring just how effective these approaches can be for these conditions. 

Living with fibromyalgia

Over 4 million adults in the United States — or roughly 2% of the population ― live with fibromyalgia. If you or someone you love has been recently diagnosed with the condition, you can check out these resources that offer education and support:

Takeaway

Research shows that fibromyalgia and migraine commonly occur together and that having one of these conditions may increase the risk of having the other. 

Studies also show that for people who experience migraine episodes, fibromyalgia may affect the frequency and severity of those episodes.

Medication is the most common treatment approach for helping manage pain in both fibromyalgia and migraine. However, several other complementary approaches could be beneficial for reducing chronic pain levels and improving the quality of life in people with both conditions.

I know the pain of both Fibromyalgia and Migraines and they are both difficult to manage. I found that a multi-prong approach works best for me along with good sleep habits and daily self-care practices.

Melinda

Anemia: How I Handle It And The Different Types
Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health

Anemia: How I Handle It And The Different Types

Looking for the Light13 Comments

Anyone can have a short bout of Anemia during their life, young girls and women can also get Anemia from their menstrual cycle, vegans have to ensure they eat plenty of alternatives to red meat and there are health conditions that can be serious to your health. I’ve had Anemia on and off most of my life but in recent years it’s an ongoing problem. I don’t eat enough red meat although I’m not vegan and I don’t eat many leafy greens.

Many people may not even know they are Anemic because they have a mild case and they bounce back. I on the other hand can’t seem to shack it even while taking an iron supplement, a good one at that. I have taken prescription iron but it doesn’t help any better than over-the-counter. Three key symptoms are hard to deal with, severe leg cramps, fatigue and I’m always freezing. When I sleep at night, I pull the covers over my head and this week started wearing wool gloves to bed. It’s way into the early morning before my hands thaw and no longer feel like ice.

During the day I wear a tee and sweatshirt and when I’m in my office I have a wool blanket over me and wool gloves on and still shiver. I have a sheepskin run over the back of my chair to add warmth and have my vent half closed. Nothing seems to matter and it’s in the dead of summer here in Texas.

I eat red meat a couple of times a month but I like a variety of meat and eat fish every week as well. It’s not like I don’t eat greens but because I’m so cold salads haven’t been on my menu and I prefer hot foods. I’m eating soup for lunch most days to keep me warm.

I also have the Immune Disorder Hypogammaglobenlemia which is the lack of red blood cells and hemoglobin to carry oxygen to my body. I’ve been taking monthly Antibody Infusion treatments since the Spring. My red blood count is still very low and I may have to continue to take Infusion Treatments for years maybe all my life.

An Overview of Anemia

Anemia is a problem of not having enough healthy red blood cells or hemoglobin to carry oxygen to the body’s tissues. Hemoglobin is a protein found in red cells that carries oxygen from the lungs to all other organs in the body. Having anemia can cause tiredness, weakness, and shortness of breath.

There are many forms of anemia. Each has its own cause. Anemia can be short-term or long-term. It can range from mild to severe. Anemia can be a warning sign of serious illness.

Treatments for anemia might involve taking supplements or having medical procedures. Eating a healthy diet might prevent some forms of anemia.

What Are The Different Types Of Anemia?

  1. Aplastic anemia
  2. Iron deficiency anemia
  3. Sickle cell anemia
  4. Thalassemia
  5. Vitamin deficiency anemia

Here Are The Symptoms Of Anemia

Anemia symptoms depend on the cause and how bad the anemia is. Anemia can be so mild that it causes no symptoms at first. But symptoms usually then occur and get worse as the anemia gets worse.

If another disease causes the anemia, the disease can mask the anemia symptoms. Then a test for another condition might find the anemia. Certain types of anemia have symptoms that point to the cause.

Possible symptoms of anemia include:

  • Tiredness.
  • Weakness.
  • Shortness of breath.
  • Pale or yellowish skin, which might be more obvious on white skin than on Black or brown skin.
  • Irregular heartbeat.
  • Dizziness or lightheadedness.
  • Chest pain.
  • Cold hands and feet.
  • Headaches.

If you are experiencing any of these symptoms, check with your doctor right away.

Melinda

References:

https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360

The strong voice of a teenager with Lyme disease
Chronic Illness · Family · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health · Tick Borne Illnesses

The strong voice of a teenager with Lyme disease

Looking for the Light10 Comments

When my daughter Rachel was 13, she suffered a seemingly simple injury that led to an outbreak of inexplicable, debilitating, body-wide pain. This left her bedridden and needing a wheelchair.

Refusing to believe doctors who claimed either that she was “faking it” or that nothing could be done, our family searched for answers until we at last found the underlying cause—unrecognized chronic Lyme disease and co-infections.

We were lucky enough to find a knowledgeable Lyme doctor within two hours of our home and we started on the long hard slog to getting her better. But we soon found that medical treatment was only part of what our family needed.

There were so many other needs: how to keep Rachel from spiraling into depression, how to continue her education when she was too sick to attend school, finding out what foods supported the healing process best—and which of those she was willing to eat.

As it turns out, one of the most helpful therapies Rachel undertook was something she figured out on her own. Throughout those dark days, she recorded her daily experiences in a journal. It chronicled the bad—her anger at the doctors who didn’t believe her, her despair at ever getting past the pain. It also recorded good times with friends—lip-synching to Hannah Montana songs, visiting the beach to try out a beach wheelchair (yes, those are a thing.) That journal became a lifeline for her, and in my view, was as important as the many different treatments she went through.

In time, Rachel’s health improved—she left the wheelchair behind, graduated from high school and college, and embarked on a career and marriage. For many years, she avoided even looking at the journal, not wanting to revisit those traumatic times.

But then, she decided to share the story with others, and the two of us collaborated on Finding Resilience: A Teen’s Journey Through Lyme Disease. The main narration is based on the journal, interspersed with additional passages by me, giving the mother’s perspective of what was going on.

Capturing the right voice

In the months since publication, we’ve garnered a lot of positive feedback. Here’s one of my favorite reviews, by a judge from the Benjamin Franklin Award competition:

Finding Resilience is a wonderfully written book (by both mother and daughter) that chronicles a teenager’s struggle with both Lyme disease and the medical establishment too unwilling to consider the—at the time—difficult diagnosis. What makes this book so strong is the voice. It’s often difficult for an adult to capture the right voice when writing about earlier experiences, but Rachel Leland does it expertly. At no time did I waver in believing that a teenager was talking to me in real time, as a teenager. This is hard—exceptionally hard—to do well…The mother’s voice, too, is appropriate throughout. All of this worked so effectively that I found myself as a reader on the same emotional rollercoaster they were on.

That’s exactly what we were going for—the shared perspective of a teenager and her mom on this hideous disease and what it takes to get through it. We hope you’ll find it informative and inspiring. Click here for more info about the book.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

A story that pulls all the heartstrings, such anguish, and a parent’s worst nightmare for their child.

Melinda

Rare Symptoms You Might Have with Fibromyalgia
Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Health · Self-Care

Rare Symptoms You Might Have with Fibromyalgia

Looking for the Light7 Comments

I’ve charted my struggles with Fibromyalgia for years and it can be debilitating for months, then give you a reprieve just long enough to enjoy and it’s back again. I have been fortunate to not have any major issues in 2024 and it’s a good thing, I have had enough to deal with. I have Restless Leg Syndrome and it can make it so hard to fall asleep, it’s nerve-wracking. I also have Neuropathy in my feet which burn quite bad. I do caution against some of the medications listed below, they are used off-market meaning they’re being used for something they are not approved for, and this is the case with Cymbalta which is a mental illness medication, the side effects are high, and some are dangerous. Anytime you take medication read the Full Prescribing Instructions, not the cliff notes. I’ve taken Cymbalta for my Bipolar Disorder and it’s a rough drug. I was not able to take due to side effects. After spending thousands on medications, and not being able to take them, I now ask the doctor what medication they plan to prescribe and why. Then I ask them to hold off sending the script into the pharmacy while I read the Full Prescribing Information which is available on the manufacturer’s website. After I feel comfortable trying the medication, I have them call the pharmacy. It may sound like a lot of work but you get out what you put in on the front end. Gone are the days of blindly taking a medication a doctor prescribes. 

—————–

Fibromyalgia can lead to unusual symptoms in some people. Knowing the range of symptoms this condition can produce may help with diagnosis and treatment.

Experts estimate that around 4 millionTrusted Source adults in the United States have fibromyalgia. This condition causes widespread pain, brain fog, and mood changes. However, there are many more, less common signs a person may experience.

Keep reading to learn what additional symptoms may be a sign of fibromyalgia, what causes them, and how they can be treated.

Can numbness and tingling be a sign of fibromyalgia?

Fibromyalgia may cause numbness and tingling, also called paresthesia, in the extremities (arms, legs, hands, and feet) due to the nerves being overly sensitive or compressed. It may feel like a burning or prickling sensation.

Treatment for paresthesia is aimed at addressing the root cause. In this case, fibromyalgia can be treated with various medications that address nerve pain and inflammation

You may manage paresthesia at home with over-the-counter (OTC) pain medications and topical pain relievers.

Can restless leg syndrome be a sign of fibromyalgia?

Restless leg syndrome (RLS) may cause uncomfortable feelings (itching, throbbing, etc.) in the legs and an urge to move the legs. RLS is associated with sleep disturbances, which can affect up to 99% of people with fibromyalgia.

RLS cannotTrusted Source be cured but is managed with things like iron supplements, antiseizure drugs, benzodiazepines, and — in severeTrusted Source cases — opioids. Drugs to increase dopamine (dopaminergic agents) may also help but cause side effects if they’re used long-term.

Managing RLS at home involves:

  • avoiding smoking, drinking alcohol, and consuming caffeine
  • following good sleep hygiene habits
  • getting regular exercise, including stretching
  • taking warm baths
  • using heating pads or ice packs

Can sensitivity to touch be a sign of fibromyalgia?

Hypersensitivity to touch, also called allodynia, may be caused by mixed messages from the neurons in the brain sending pain signals when there is no real pain. ResearchersTrusted Source explain that the true cause is mostly unknown.

Allodynia is treated individually. You may work with a pain clinic to get physical therapy, psychological support, and oral medications (like calcium channel antagonists, NSAIDs, etc.) for the pain. 

Without treatment, allodynia may get worseTrusted Source over time. You can manage it by working on stress relief and accepting that the pain may not go away completely.

Other uncommon signs and symptoms

Fibromyalgia affects each person in a different way. Beyond the usual symptoms, there are various other less common signs of fibromyalgia.

They may include:

Treatment may be targeted at the specific symptom(s), or your doctor may suggest treatments for the fibromyalgia itself.

Medications include:

When to talk to your doctor

Make an appointment with your doctor if you experience symptoms that concern you or interfere with your everyday life. Even if your symptoms are not related to fibromyalgia, they may be a sign of some other medical issue that needs attention.

Melinda

Reference:

https://www.healthline.com/health/fibromyalgia/rare-fibromyalgia-symptoms?utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=fibro&utm_content=2024-07-16&utm_term=s:hl_n:fibro&apid=36735751&rvid=7f053d6ecf820dccd09e4914833cbd49bdfe95bb517404ee9b41601767d1bace#other-symptoms
New Medication Ramp-Up Time Period Is Called Efficacy
Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Illness

New Medication Ramp-Up Time Period Is Called Efficacy

Looking for the Light10 Comments

Many if not most prescribed medications require a ramp-up period called efficacy, this is the time it takes for the medication to reach a therapeutic level. 

For example:

I started Trintellex several weeks ago for my ongoing depression. The Prozac wasn’t working any longer which is common when you take a drug for a long time. The efficacy of Trintellix is 6-8 weeks, during this period you can experience common side effects and they often subside once the drug reaches efficacy. It’s important to track these symptoms but it’s not always time to call your doctor. Never stop taking medication before talking to your doctor, stopping medication abruptly can send your brain into a tailspin. If you can’t wait to hear back from your doctor, go to your nearest ER for help ASAP. It may save your life. 

The most important side effects to be aware of are adverse side effects, which are the worst side effects that can be deadly and require immediate attention. It’s easy to forget the side effects after reading the prescribing instructions the first time so I keep them handy.

The past week I was overcome by nausea and vomiting and thought I was getting sick. After reading the prescribing instructions again I was reminded that those are common side effects, not ones to be alarmed about. I have experienced sparks in the brain as the medication reaches efficacy, like crying, returned energy, improved cognition, and feeling better overall. 

All medications including over-the-counter items still have side effects, especially for children. 

Always call your doctor if you are concerned about anything, not just medication side effects. 

Melinda

Fibromyalgia Thoughts #12-Celebrating
Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Health

Fibromyalgia Thoughts #12-Celebrating

Looking for the Light6 Comments

This post is really more of a celebration of my Fibromyalgia staying under control or flare’s have been lighter. This year my other health issues have taken center stage, and I was lucky to avoid a total flare.

Some days I wake in a fog, I don’t fight it and go lie down. How productive is staring at a computer screen or out the back window?   I’m more forgiving of myself now and know I’m blessed to be able to focus on my health. I can’t imagine how hard it is to have Fibromyalgia, or any chronic illness, and work, care for kids, or other family matters. My hat’s off to those who manage daily life.

Don’t overdo it! 

I have Bursitis in both hips and receive steroid shots to manage the pain. The shots start to wear off in two months but I have to wait until the three-month mark. This is when my hip pain elevates, and having a flare on top of is excruciating. Some days it’s hard to walk, especially the stairs, these are the days my husband jumps in to help me manage the day.

I send well wishes to everyone who has Fibromyalgia, remember towmorrow is a new day.

You’re not alone and talking to someone could change the mood of your day.

Melinda

Do You Understand How Inflammation Affects Your Body?
Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health

Do You Understand How Inflammation Affects Your Body?

Looking for the Light4 Comments

What Is Inflammation?

Inflammation is a process by which your body’s white blood cells and the things they make protect you from infection from outside invaders, such as bacteria and viruses. But in some diseases, like arthritis, your body’s defense system — your immune system — triggers inflammation when there are no invaders to fight off. In these autoimmune diseases, your immune system acts as if regular tissues are infected or somehow unusual, causing damage.

Inflammation can be either short-lived (acute) or long-lasting (chronic). Acute inflammation goes away within hours or days. Chronic inflammation can last months or years, even after the first trigger is gone. Conditions linked to chronic inflammation include:

Outside of inflammation, these come with a host of other side effects on you and have a tremendous impact on your life. It could lead to you wanting to buy metformin and similar medications, but fruit and vegetables can help, too.

Many fruits and veggies help with inflammation

Juicy Berries, (BlueBerries, strawberries, and Black Berries)

Yummy Avacodos

Mouthwatering dark chocolate

Apples

Grapes

Tomatoes

Olive Oil

Leafy Green Veggies

Oily Fish

Whole Grains

Unsaturated Fats

This is a short list, you can find the complete list. Click on the link below.

I’m reading Calm Your Inflammation by Dr. Brenda Tidwell and will update you as I read more.

Reducing inflammation is critical to people with Chronic Illnesses. We need all the help we can get.

Melinda

Ref.

https://www.webmd.com/arthritis/about-inflammation

Do You Think Ticks Hibernate Or Die In The Winter?
Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Men & Womens Health · Tick Borne Illnesses

Do You Think Ticks Hibernate Or Die In The Winter?

Looking for the LightLeave a comment

One would think that freezing weather would cause ticks to hibernate or die, but you would have to think again. States that stay below freezing for most of the winter will not have a high risk but it is not impossible. Keep this in mind when raking the leaves and snow close to the ground.

The key is to know ticks are active and how to prevent tick bites. It’s easy to fend off these beasts by making a few changes. If you are walking in high grass, or have tree limbs brushing the trail, even dead leaves can be a host for ticks. Before you head out, spray exposed areas with DEET* making sure to spray the foot to above your ankles.

Put pant legs in socks so the tick can’t climb in. Wear a hikers hat with a trail that covers the back of the neck. No more falling off a tree limb right down the back of your shirt. They look for every chance they can get to attach to you, the host. The most critical step is to check your body, complete body, once home. Wash your clothes right away, don’t put them in the washing bin and let them move around your other clothes.

As someone who lives with Chronic Lyme Disease, I can say that preventing a tick bite is a hell of a lot better than getting Lyme.

Tick Expert with the Connecticut Agricultural Experiment Station says:

If you’re enjoying the warmer-than-usual winter, so are ticks. The insects do not have to go into their usual hibernation on days when the temperature exceeds 40 degrees. It used to be the people who study ticks in Connecticut got pretty bored in the winter months. Not anymore.

“We used to call it tick activity season,” explained Dr. Goudarz Molaei, a tick expert with the Connecticut Agricultural Experiment Station. “We can no longer call it tick activity season as ticks are active year-round.”

When people get bit, they send their ticks to the Agricultural Experiment Station. It used to be they would get about 50 all winter long. Now they are getting around 800.

“We receive ticks daily, and some days we receive over ten tick specimens from the public,” Molaei said.

If Connecticut no longer has a non-active tick season, chances are the surrounding states are also seeing an increase in ticks during the winter. Be safe by preparing on the front end.

DEET* or no DEET, is based on your preference. There is plenty of information for your searches.

Melinda

References:

https://www.wtnh.com/news/ticks-becoming-active-year-round-in-connecticut-due-to-warmer-winters/

Do You Know What A VNS Device Is?
Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Mental Illness

Do You Know What A VNS Device Is?

Looking for the Light6 Comments

My Bipolar Disorder was difficult to manage with medication alone. My Psychiatrist told me about a device that was waiting for FDA approval.

In 2005 the VNS device was approved by the FDA and my doctor had all the information ready to send to my insurance company.

The first time insurance denied the device. Here’s how I got insurance to approve. I wrote a letter explaining what my life was like and how it controls my life and in time the possibility of suicide.

A VNS device looks much like a pacemaker with two leads that attach to your vagus nerves, sending signals to the brain to relieve your depression.

The surgery doesn’t take long, but getting used to the device turned on takes a while.

When you are talking the device makes your voice sound weird but only when the device is sending signals to the brain.

When I had my surgery, no one had seen one implanted which meant the Gallery was full of other doctors. My doctor got to see my boobs, that had to settle in.

After you have healed the device is turned on at a low level so you get used to the feeling of the device working. Then we turned up the level until we found what we thought was the right setting.

I kept it on for years but finally admitted it wasn’t working and had it turned off.

The only pain involved is initial surgery.

I thought this device would change my life but it didn’t work out that way.

Photo by LinkedIn Sales Navigator on Pexels.com

This is the notes I made on 12/30/05.

Received a letter today from the insurance company, they approved.

I can’t wait to call my Psychiatrist to tell him the news and to get my surgery date rolling.

2005 has been a rough year but this news is my beacon of hope.

The greatest news all year.

Unfortunately, I was in the percentage of people that the device didn’t work.

I am waiting to hear about new treatments but nothing new for my mental illness.

Melinda

I’m Agoraphobic
Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Health

I’m Agoraphobic

Looking for the Light4 Comments

My agoraphobia started a year or two before the pandemic. It was frustrating but my therapist helped on the journey. It started with intrusive thoughts that people were chasing me in their car and planning to hurt me by driving me off the road. These thoughts lasted for a long time. These are not dreams, they came during the day.

It’s possible the trigger was set off by me driving to a doctor I had seen for 15 years and got lost with no cell phone, I had left it at home. It was very stressful because I didn’t know the area well and had problems getting back to the freeway. Is this connected, I don’t know. 

Then ongoing dreams that centered around my car started. I couldn’t find the right key, I rented a car and when I looked for it I didn’t know how to find the car. I was carrying a huge keychain full of keys and I couldn’t find the right key and different dreams continued. The dreams came often in the beginning. The latest thought is someone is following me after going to the bank. 

I thought it might be Agoraphobia but thought it was someone who could not leave the house. When I started reading about Agoraphobia, I was shocked by the different types. I found my symptoms listed and now have an answer.

One treatment option is EMDR Sessions. It works for many people but some doctors do not recommend it for people with Bipolar Disorder. It doesn’t matter, I’m not having 20 treatments to see if it works. Life is too short.

For now, I only drive within a 3-4-mile radius of the house which makes me less independent. I don’t focus on Agoraphobia, it’s when I make plans to leave the house that the feelings kick in and dictate what I do next.

Melinda

Do You Know A Person With Bipolar Disorder? This Is My Personal Experience
Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Illness · Moving Forward

Do You Know A Person With Bipolar Disorder? This Is My Personal Experience

Looking for the Light18 Comments

If you care for someone with Bipolar Disorder, know the basics about the illness and side effects. You’ll learn as you go. It’s important that you don’t keep asking how they’re doing; that will stress them out. You will have to up your game to catch the nuances of body language and conversations. 

Different types of Bipolar Disorder.

There are three types of bipolar disorder. All three types involve clear changes in mood, energy, and activity levels. These moods range from periods of extremely “up,” elated, irritable, or energized behavior (known as manic episodes) to very “down,” sad, indifferent, or hopeless periods (known as depressive episodes). Less severe manic periods are known as hypomanic episodes.

Bipolar I disorder is defined by manic episodes that last for at least 7 days (nearly every day for most of the day) or by manic symptoms that are so severe that the person needs immediate medical care. Usually, depressive episodes occur as well, typically lasting at least 2 weeks. Episodes of depression with mixed features (having depressive symptoms and manic symptoms at the same time) are also possible. Experiencing four or more episodes of mania or depression within 1 year is called “rapid cycling.”

Bipolar II disorder is defined by a pattern of depressive episodes and hypomanic episodes. The hypomanic episodes are less severe than the manic episodes in bipolar I disorder.

Cyclothymic disorder (also called cyclothymia) is defined by recurring hypomanic and depressive symptoms that are not intense enough or do not last long enough to qualify as hypomanic or depressive episodes.

Until the doctor gets the medication balanced, you might have to take a medication for a month or longer to see if it works; if not, the doctor tries another. Changes in medication will continue until the Psychiatrist finds the right mix of medication. I went through many drugs in the beginning because I’m treatment-resistant, which means many medications do not work on me. It’s important to note that over time, medication can stop working, and the Psychiatrist has to find another medication. I’m currently taking a cocktail of 6 different medications.

In the 32 years since I was diagnosed, I’ve experienced rapid cycling, mixed features, hypomania, and depression. The most difficult for me to manage is rapid cycling. One minute you feel great, and 15 minutes later depressed. This is a very unstable time. Make sure you let your Psychiatrist know about your rapid cycling.

If possible, find a Psychopharmacologist over a Psychiatrist if you can find one. The difference is that a Psychopharmacologist spends extra years of education focusing on how medication and the brain work. It can be difficult to find one.

I thought my doctor didn’t like me for a long time. Over time, I learned how to talk to him, and now he’s like family. You don’t have to like your doctor if they listen and share details about the drugs and answers to your questions, and you trust them, keep them as your doctor.

Personal Experience

The backstory starts with the DEA, which is limiting the amount of medication each pharmacy receives each month. This is an experience I have been dealing with for the past year. This month, my pharmacy only had 25 pills, and I had to wait 3 weeks for a refill because they had not received a shipment. Pharmacies are NOT making these rules. Get to know your pharmacist; they may be able to help you through this crisis. Don’t take your anger out on the Pharmacy. Until the DEA backs off, this problem will continue.

Here’s one of the challenges I face. One medication is what I call my anchor medication. This past month, it took 3 weeks to get my medication in stock. In those 3 weeks without the medication, it is no longer in your system. After going three weeks without the medication, my body has to start over. So far, I have not been able to see if it works because I can’t take the medication long enough to work.

My new Psychiatrist is cutting my Xanax to 3 per day, not the 4 per day that I have been taking for so long. The bottom line is I’m in withdrawal as my body adjusts to only 3 a day. You stack that on top of the problems with refills; it’s frustrating. This means my anxiety is higher during certain hours when I don’t take my Xanax. It’s a very addictive medication, and one of the worst withdrawals I’ve been through.

It’s important to have someone that you can reach out to if you need help. 

This happened two evenings ago due to my anxiety being very high. To better communicate, you can say certain words to help them understand where you are at and when you are falling into depression or higher than a kite. 

I was so truly happy, and I haven’t been happy in so long. I was soaking in every moment because my mood could change. Feeling joy in my heart felt so good, and I didn’t want it to end.

My husband said I was jacked up, and I said I knew. The key word here is I KNOW. For me, that means I know and am keeping tabs on your mood. If it’s a problem after that, I’ll let you know. 

I went upstairs to get ready for bed, and when he came into the room, I continued the conversation in a combative way. I was jacked and angry, raising my voice much higher and even pointing my finger at him. I could not believe what was coming out of my mouth and my behavior. In the last 22 years, we’ve had a handful of fights.

We have established words to use when my mood changes and is concerning. When he tells me I’m jacked up, the keyword is I KNOW, which means I’m keeping an eye on it. When I’m feeling suicidal, I let him know. This is how we communicate about my Bipolar Disorder when he observes a behavior change. 

If you are newly diagnosed, be patient. When you start the journey, it can be rough and frustrating. 

Don’t obsess over your new diagnosis; learn the basics of your illness and symptoms for now. The most important thing I can say is to only read about your illness or symptoms of Bipolar Disorder from trustworthy websites. When you read anything else, you risk getting the wrong information. It’s critical to read a respected source. Right now is not the time to read the wrong information. On my website, there is a pull-down menu called Organizations That Can Help. There, you can find resources under Mental Illness. In the beginning, you may feel overloaded; remember this is a long journey.

https://www.nimh.nih.gov/health/topics/bipolar-disorder

Melinda

Don’t Buy Prescriptions Online Unless It’s A Legit Pharmacy
Celebrate Life · Chronic Illness · Health and Wellbeing · Medication · Men & Womens Health

Don’t Buy Prescriptions Online Unless It’s A Legit Pharmacy

Looking for the Light6 Comments

In America we have the FDA to approve all prescription medications, manufacturers have to prove their drug has all the data on clinical trials, and they even do down to approving what the label can have on it. If the FDA is not satisfied the FDA will tell the manufacturer to go get this information and reapply. That’s critical to know. In America, we have a system that all prescriptions go thru before being released to the public. They also have a section you can report adverse reactions or a medical device that failed. We have a system.

I know that people with chronic illnesses especially those with chronic pain have trouble getting the pain management they need and out of frustration turn to the Internet. BEWARE!

Photo by Pixabay on Pexels.com

There are other countries that have a system in place but we have no idea if it matches our standards. There are also countries that have no system to verify the drugs are pure, they do what they say and they are monitored.

The FDA says this about online Pharmacies.

Warning Signs of an Unsafe Online Pharmacy

Beware of online pharmacies that:

  • Do not require a doctor’s prescription.
  • Are not licensed in the U.S. and by your state board of pharmacy.
  • Do not have a licensed pharmacist on staff to answer your questions.
  • Send medicine that looks different than what you receive at your usual pharmacy, or arrives in packaging that is broken, damaged, in a foreign language, has no expiration date, or is expired.
  • Offer deep discounts or prices that seem too good to be true.
  • Charge you for products you never ordered or received.
  • Do not provide clear written protections of your personal and financial information.
  • Sell your information to other websites.

These pharmacies often sell medicines that can be dangerous because they may:

  • Have too much or too little of the active ingredient you need to treat your disease or condition.
  • Not contain the right active ingredient.
  • Contain the wrong ingredients or other harmful substances.

If you buy from any online site from another country, you have no guarantee of what’s inside. It could cause more harm to your body, it could have nothing in there to help you, and the worst is it can be laced with different products and can kill you.

That’s strong words I know but I have read too many articles and heard of personal stories where buying online was the worst move to make.

Melinda

References:

Yes, there are ligament Pharmacies online, I would check them out before you buy. Do an Internet search on the Pharmacy. You may be surprised what you find or you see they are legit Pharmacies you can go to. The key is what country is your medication coming from.

Where you can protect yourself is to search, search, and search before buying. Your health and life are more important. Personally, I would not buy a drug online unless my insurance company offers an online Pharmacy.

https://www.fda.gov/consumers/consumer-updates/how-buy-medicines-safely-online-pharmacy#:~:text=These%20internet%2Dbased%20pharmacies%20often,countries%20with%20high%20safety%20standards.

 

Have A Chronic Illness? Take Control By Shaving Your Head
Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health · Mental Health · Moving Forward · Survivor

Have A Chronic Illness? Take Control By Shaving Your Head

Looking for the Light9 Comments

*This post is from 2017 and I’ve updated it to capture the years between 2017 and 2023.

There are times when Chronic Illness can get the better of you. I had such a week resulting in shaving my hair off. I’m no GI Jane but do have a nice head minus the scars from brain surgery.

For the past 13 years, I’ve been a caregiver to my grandparents and spent time in Psychic Hospital twice for ECT treatments. Finding an answer to my heart problem took three years, two cardiologists, and a trip to The Mayo Clinic I had a diagnosis in four days.

The search for ?? (Lyme Diseases) started in 2012 and the diagnosis in 2014. It took two attempts to find a competent doctor and tons of frustration. I’m not driving, my cognitive abilities like balance and memory were taken by Lyme.

Last week I discovered a total knee replacement is required and scheduled for 11/14/17. All the falls from Lyme blew out my right knee.

                                                                                            Wild Crazy Hair

I’m not one to have a pity party but the weight on my shoulders became too much. I gave my husband many reasons why I shaved my head, the truth is CONTROL. I have four chronic illnesses and have to manage my health every day and every day can be different. There are many days I don’t have the strength to bathe, on those days I use medical-grade body wipes.

I’m 54, my mental illness is close to balanced, was looking forward to driving after several years, and most importantly I want to know who I am.

Shaving my head was liberating, a part of the new me came out. I can control some things and have to roll with the punches on others.

Can you imagine coming home from work to find your wife has shaved their head? My husband wasn’t surprised.

Melinda

Fibromyalgia Thoughts #8 Giving Myself Grace
Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Health · Self-Care

Fibromyalgia Thoughts #8 Giving Myself Grace

Looking for the Light5 Comments

It’s been a year since I wrote Fibromyalgia Thoughts #7, I had no idea how well I had been managing. Until today, when I wasn’t managing at all. A wave came over me after breakfast just as I was going outside to water the plants, and the life drained out of me. I had to go back to bed even though I had a good night’s sleep, maybe the best sleep I’ve had in days.


The temperature here has already reached 100 degrees and the humidity is high. We’ve touched on several record-breaking days already and it’s not even July. July and August are usually the hottest months in Texas, but we are having average temps in June. The heat is exhausting.

I go out to water most days by 9:00 am but today I was delayed by an hour since I laid down. Boy, what a difference an hour makes. It’s not that I was feeling so much better but knew that if I could muster the energy it would be much easier to water now than wait or ask my husband for help. He’s always glad to help, but it’s my passion, my flowers, and my sanctuary. I thought if I could just get out there I would somehow feel better. NOT. 

I’ve been battling many symptoms that have progressed over the past year, I don’t know if they are all Fibro since other things are going on with my health. I think telling myself it’s something else has somehow allowed me to keep pushing on.

I see a new Rheumatologist at the end of the month and I hope to have some answers. I’ve been keeping detailed notes of each symptom by body area and tracking the progression. I can only sleep for 2-3 hours at a time before the pain wakes me, I have to roll over and wait for sleep to come again. It’s very tiring.

The other morning the muscles in my legs were so tight I could hardly walk, I lay in bed thinking how am I going to do this. I took my muscle spasm medication and moved to the chair. I realized today that the limp from my hip is more pronounced, that’s from my Brusitis. I am late on my steroid injections and can tell. 


I know this afternoon will include a nap, which I give myself grace. I’ve beat myself up for too many years for not being the best wife or granddaughter or best self. In fact, the best self I can be is to take care of my health, do what I can, be honest about what’s going on, and take the pass when I have to. 


I’ll keep you posted on my Rheumatologist appointment. I work hard to not over-research my symptoms and go in with a layman’s diagnosis. I’ve taken very precise notes and the symptoms will hopefully lead to answers or in the right direction. 


Melinda

Do You Have Painsomnia?
Chronic Illness · Chronic Pain · Health and Wellbeing · Medical · Men & Womens Health · Self-Care

Do You Have Painsomnia?

Looking for the LightLeave a comment

You’ve probably heard the term or worse yet suffer from Painsomnia yourself. If the term is new to you, here’s the short version. A person experiences insomnia due to pain preventing them from falling asleep or staying asleep.

“Sleep helps our bodies rest and heal, so good-quality sleep is vital for people with chronic illnesses. However, painsomnia can make a good night of sleep feel like a pipe dream. Fortunately, medical researchers are starting to learn more about the condition and how patients can cope.”

I have the type of Painsomnia that keeps me up after waking from pain and makes it impossible to go back to sleep. My sleep medicine has worn off by then and no it’s just pain against sleep, and sleep rarely wins.

I have tried several hacks to help go back to sleep with mixed results. I have an essential oil stick with a Lavander fragrance that’s supposed to relax you but I can’t tell it does any good. The one item that has worked this past week is Delta 8 gummies. I take one right after waking up and they do relieve stress and keep my mind from wondering allowing me to go back to sleep.

I have to point out that I’m living without pain medication right now so it can be a challenge when I have to sleep on my shoulders and hips. No back or stomach sleeping for me.

What can you do if you are struggling with Painsomnia?

Better Sleep Habits

The MD Anderson Sleep Center recommends that people adopt new habits into their nightly routine. These habits help form the foundation for good sleep hygiene:

  • Don’t use phones or computers before bed, as the blue light from the screen can disrupt sleep and cause eye strain.
  • Avoid taking long naps during the day.
  • Make your bedroom cool and dark.
  • Avoid eating heavy foods or exercising right before you sleep.

Sleep Aids

If you have trouble sleeping, your healthcare provider may prescribe sleep aids or encourage you to try over-the-counter medications. These drugs can help regulate your circadian rhythm and lull you into slumber. Melatonin supplements help regulate your sleep cycle.9

A study from Cureus journal found that ashwagandha, a medicinal herb, can help people fall and stay asleep.10

Prescription drugs may include benzodiazepines, which are often used to treat anxiety and insomnia. Before you try any new supplements or prescriptions, make sure to consult your healthcare provider.

Cognitive Behavioral Therapy

Cognitive-behavioral therapy is a treatment that encourages people to rethink and change their behaviors. For people with insomnia, cognitive behavioral therapy may help,11

For example, a person without a sleep routine can work with a therapist to start better habits before bed. If anxious thoughts are keeping you up at night, cognitive behavioral techniques can teach you to stop those spiraling thoughts and focus on other, more restful thoughts.

If your painsomnia makes you feel helpless, those worries can make it even harder for you to get sleep. You may blame yourself or blame your body if you’re struggling with painsomnia. Cognitive behavioral therapy can help you cope with some of that frustration.

Hypnotherapy

While hypnotherapy is not a proven cure for painsomnia, some researchers have found that hypnosis might improve insomnia.12Hypnotherapy is an alternative medicine where practitioners use hypnosis and the power of suggestion to guide patients through various concerns.

Hypnotherapy is not a replacement for your healthcare provider or your current medications. Some researchers describe hypnotherapy as a sort of placebo. In either case, hypnosis can lull you into deep relaxation. This relaxation may help people with painsomnia fall asleep.

There’s no one size fits everyone but there are options for those who suffer from Painsomnia. I haven’t found the answer yet but did sleep until 2:00 AM this morning.

What hacks do use to help you go to sleep?

Melinda

Ref:

https://www.verywellhealth.com/painsomnia-5093183

Book Review · Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Health · Moving Forward

Book Review Finding Joy with an Invisible Chronic Illness by Christopher Martin

Looking for the Light1 Comment

I was kindly gifted an advanced copy of Finding Joy with an Invisible Chronic Illness, Proven Strategies for Discovering Happiness, Meaning, and Fulfillment by Christopher Martin from NetGallery for a review. 

Published 2021

I am a school psychologist, husband, father, and – pertinent to this website – an author who has multiple invisible chronic illnesses. 

 And an invisible chronic illness is a beast.  On top of draining you physically, a chronic illness can impact all aspects of your life ranging from causing financial hardship to harming your relationships to dampening your spirits.  Try to be cheerful when you have this unremitting “monkey on your back” known as an invisible chronic illness that constantly demands your attention 24-7.  Needless to say, it’s easy to let yourself and others down. 

      Plus, your family or friends can’t see your illness, as it’s invisible, and they may not understand.  Most with an invisible illness are familiar with “advice” ranging from “stay positive” to “you look good” to “Have you tried ___ for your condition?”  Yup, you probably have, and it didn’t work. 

      On top of that, best wishes in accessing (and maintaining) high quality medical care when you are too tired to even take care of yourself.    

      Welcome to the world of an invisible chronic illness.  I should know.  I suffer from multiple invisible chronic illnesses, including a primary immune deficiency disorder and bronchiectasis. 

 But it doesn’t have to be this way – for you or for me.    While I am not cured of my illness, I enjoy a fulfilling life and experience ongoing joy, peace, and happiness.  Because of outstanding medical care, extensive self-educating and self-care, a supportive family, and a strong faith, I effectively manage my chronic illnesses.  But I didn’t want to be the only one to benefit.  It was my goal, in turn, to give back to others by doing what I love to do:  authoring books on these conditions. 

Blurb

“Finding Joy is a vital guide on how to best manage and navigate life with a chronic illness.”—James Nestor, New York Times bestselling author of Breath: The New Science of a Lost Art

“Finding Joy provides a comprehensive, evidence-based roadmap for not only coping with chronic illness, but personally optimizing self-growth and resiliency from the experience.” —Joanne Joseph, PhD, professor of psychology and interim dean of the College of Health Sciences, SUNY Polytechnic Institute, and author of The Resilient Child: Preparing Today’s Youth for Tomorrow’s World

* How can you experience those good thoughts and feelings, enjoy life to its fullest, and de-stress when faced with relentless physical suffering?

* How can you enhance your relationships, find support, respond to the naysayers, and possibly even help them understand you and your illness?

* When seeking medical care, how can you get the answers you deserve, and access and maintain quality healthcare?

Early Reviews

“”Finding Joy is absolutely phenomenal. Chris Martin’s heartfelt approach offers numerous meaningful strategies to thrive when faced with the many unseen and unrecognized issues of living with an invisible chronic illness.””—Heather Lewis-Hoover, MS, CAS, school counselor

““Finding Joy is a vital guide on how to best manage and navigate life with a chronic illness.””—James Nestor, New York Times bestselling author of Breath: The New Science of a Lost Art

“Finding Joy provides a comprehensive, evidence-based roadmap for not only coping with chronic illness, but personally optimizing self-growth and resiliency from the experience.” —Joanne Joseph, PhD, professor of psychology and interim dean of the College of Health Sciences, SUNY Polytechnic Institute, and author of The Resilient Child: Preparing Today’s Youth for Tomorrow’s World

My Thoughts

I think Chris says it best, the diagnosis is a step forward, it’s not the last. 

Finding Joy with an Invisible Chronic Illness is a great find, one for all to read, patients, loved ones, and, family members. It is a simple and practical approach to taking control by understanding how we think and what we have control over when it comes to our chronic condition and healthcare treatment. 

Enjoy Reading,

Melinda

Looking for the Light

Book Review for Hope Amid the Pain by Leslie L. McKee
Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Health

Book Review for Hope Amid the Pain by Leslie L. McKee

Looking for the Light3 Comments

I want to thank Leslie L. McKee for sharing an advanced copy of Hope Amid the Pain: Hanging On to Positive Expectations When Battling Chronic Pain and Illness (a 60-Day Devotional Journal) for an honest review.

HOPE Amid the Pain
Hanging On to Positive Expectations When Battling Chronic Pain and Illness (a 60-Day Devotional Journal)
©2021 by Leslie L. McKee

176 pages

Publish Date: October 25, 2021

About the Author

Leslie is an author, editor, and reviewer. She is a member of American Christian Fiction Writers and The Christian PEN. Some of her devotionals were published in compilations by Ellie Claire in 2017 and 2020. Her flash fiction stories have been published with Havok, Splickety, and Spark (websites, magazines, and anthologies). Her devotional journal (HOPE Amid The Pain: Hanging on to Positive Expectations When Battling Chronic Illness and Pain) will soon be published with Ambassador International. She enjoys reading, playing piano, crocheting, spending time with family and friends (and her turtle!), and rooting for the NY Giants. 

Blurb

Why me? Is God punishing me? Is my faith not strong enough for God to heal me? How can I achieve my dreams? What’s my purpose?

If you’re someone living with a chronic illness or chronic pain, these are just a few of the questions you’ve likely asked on more than one occasion. You may feel overlooked or even resentful. You try to stay positive, but some days it’s hard. It’s natural to feel this way and grieve, but it’s still possible to have a hope-filled life. God has a purpose for the pain.

Christians aren’t immune from pain and illness, but we don’t have to go through it alone. Jesus promised that He would “never leave you nor forsake you” (Deuteronomy 31:6 NIV).

Millions of women suffering from chronic pain and illness want the reassurance they’re not alone. The devotions in Hope Amid the Pain are written by a chronic pain warrior with over twenty-five years’ experience and will point the reader to hope and encouragement. It’s possible to Hang On to Positive Expectations (HOPE) even amid the pain.

What Others Are Saying

Beautifully written, HOPE Amid the Pain tugs at the heart with both practical and spiritual instruction. Anyone who is or has suffered with crippling and debilitating pain or illness will find encouragement and support in this devotional. Spirit-lifting, wise, and filled with inspiration, this devotional is sure to strengthen hearts for wherever the Lord is leading.

Debbie Macomber | #1 NYT Bestselling Author

McKee writes with compassion and understanding. Words of grace and compassion for those struggling with chronic pain.

Vannetta Chapman | USA Today bestselling author

As a mental health therapist I often look for resources for clients who struggle with chronic mental and physical illnesses. Leslie L. McKee speaks from personal experience as a woman who suffers from chronic illness. She has combined her personal experience, her deep faith in Christ, and her writing skills to provide a devotional which will truly minister to women who are fellow travelers on the chronic illness journey. Her format provides encouragement with practical application based on Scripture. I can’t wait to be able to offer such a devotional to my clients.

Patricia J Edwards| LCSW, TheAntioch Group

My Thoughts

Leslie has been a chronic pain warrior for over twenty years and understands the challenges we face daily. She does a great job of lifting you up; it’s like a gentle hug from a friend.

The journal covers topics like:

Don’t Settle

You Are Enough

Rest Stop

Through The Fire

Leslie also offers a Resource guide at the back of the book and a chapter on Scriptures. 

I think it’s a great gift for you or someone you care for who has a chronic illness or suffers from chronic pain.  Self-care is critical to our overall health and especially our mental health. 

Leslie’s book is a must buy and will be a resource you will refer to again and again.

Melinda

Repost from 2021

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health

Aromalief Hemp Cream vs Voltaren Gel

Looking for the Light4 Comments

From the Aromalief Blog, you might be surprised at the difference between the two.

Aromalief Team

In February of 2020, the popular prescription pain relief cream Voltaren changed to Over the Counter through a process at the FDA called Rx to OTC. This cream was first approved in 2007 to help temporarily relieve arthritis pain. In this blog post, I would like to share with you the ingredient differences between our cream Aromalief and Voltaren made by Novartis. 

Aromalief Hemp Pain Relief Ingredients

Aromalief Hemp Pain Relief Cream combines the cooling power of naturally derived menthol with a blend of botanicals and nutrients. The preservatives used in Aromalief are non-toxic and help to prevent bacteria from growing in it. 

ACTIVE INGREDIENTS

MENTHOL

INACTIVE INGREDIENTS

ALOE BARBADENSIS LEAF EXTRACT, WATER, STEARYL ALCOHOL, PRUNUS AMYGDALUS DULCIS (SWEET ALMOND) OIL, ISOPROPYL MYRISTATE, GLYCERYL STEARATE, MENTHYL LACTATE, GLYCERIN, PEG 100 STEARATE, CANNABIS SATIVA SEED OIL, ULVA LACTUCA LINNAEUS, FUCACEAE FUCUS VESICULOSUS, SODIUM HYALURONATE, HELIANTHUS ANNUUS (SUNFLOWER) SEED OIL, FRAGRANCE, LAVANDULA ANGUSTIFOLIA (LAVENDER) FLOWER OIL, MALTODEXTRIN, GLUCOSAMINE SULFATE, DIMETHYL SULFONE (MSM), L-ARGININE, GLYCOL STEARATE, PHENOXYETHANOL, CAPRYLYL GLYCOL

Voltaren Gel Ingredients

Voltaren Gel’s active ingredient is Diclofenac Sodium which is a Non-Steroidal Anti-Inflammatory Drugs also known as NSAIDs. Also included in the formula is Ammonia. 

ACTIVE INGREDIENTS

DICLOFENAC SODIUM

INACTIVE INGREDIENTS

AMMONIA,  CARBOMER HOMOPOLYMER TYPE C, COCO-CAPRYLATE/CAPRATE,  ISOPROPYL ALCOHOL,  MINERAL OIL, POLYOXYL 20 CETOSTEARYL ETHER,  PROPYLENE GLYCOL, WATER

Annabell wrote this post in response to the questions she received on their Facebook page. 

I can speak from personal experience: Aromalief works like no other topical cream I’ve used. Soon after I rub the cream on, it begins to warm up and has a light menthol and lavender scent. Nothing overpowering. I joke all the time that my dogs would not know it’s me without the Aromalief scent. 

Aroalief is for tired, achy muscles, arthritis, fibromyalgia, and neuropathic pain. I even use it for my carpal tunnel in both hands.

Three things I’ve learned since having the opportunity to review Aromalief for Chronic Illness Bloggers are that she strives for excellence, guarantees 100% customer satisfaction, and is committed to the pain community. The bonus for me is that Aromalief is WOMEN-owned and made in America.  

Here’s a copy of my review for Aromalief Lavender Hemp Pain Cream.

If you have any questions for Annabell, please write to her at Aromalief.

Melinda

Repost

 

 

 

12 Ways You Can Help Yourself Manage Chronic Pain
Chronic Illness · Chronic Pain · Health and Wellbeing · Men & Womens Health · Self-Care

12 Ways You Can Help Yourself Manage Chronic Pain

Looking for the Light2 Comments

Chronic pain–defined as ongoing pain that continues for longer than six months–is a common complaint of patients with persistent Lyme disease.

The CDC estimates that 20% of Americans currently live with chronic pain. Estimates range from 10% to 36% of Lyme patients who are diagnosed and treated early are left with chronic symptoms.

For the past 40 years, the medical definition of chronic pain was more narrowly defined, including only those patients with actual or potential tissue damage.

Recently, with the help of researchers at Johns Hopkins Medicine, the International Association for the Study of Pain (IASP) has made a subtle but important change to the medical definition of pain.

The new definition, “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damages,” is important as it includes the pain caused by an overstimulated nervous system, commonly associated with chronic pain.

This new more inclusive definition, if adopted by insurance providers, could have a positive impact on access to health care for disempowered and neglected populations.

Defining chronic pain

If you suffer from chronic pain, you have likely been asked to rate your pain on a scale of 1-10.  As much as you may dislike rating your pain, this information helps your medical provider gauge whether you are making progress with the current treatment plan, or not.

Having worked as a physical therapist for years, I found the Visual Analog Scale (VAS) works better than telling someone to simply “rate your pain on a scale of 0-10,” especially with children.

Visual analog scale

 

Because Lyme disease can affect every organ and system of the body, every patient may have a different set of complaints. While neck, joint and muscle pain are very common in early Lyme disease, there are many other types of pain when the disease becomes chronic.

For instance, allodynia is a type of pain that is caused by something that shouldn’t normally cause pain (eg. wind or light touch may feel like sandpaper or a burn.) Menstrual pain, bladder pain, testicular pain, bone pain, and widespread nerve pain are common in chronic Lyme patients.

The “cup theory”

When I explain pain to patients, I use the cup theory. Depending on your age, your brain, and your body, everyone has a different size cup—or a different capacity—for pain. We are each only capable of handling a certain amount of pain. Once your cup is full, you are essentially at a 10 out of 10 on your individual pain scale.

You may have a constant headache filling your cup 1/2 way (or 5:10 on your pain scale), and then your knee starts hurting pushing you up to a 7:10, and then your lower back spasms, and BOOM–your cup is full!

What I’ve found is that if we can help chronic pain patients empty their cup just a little, we can start to make progress. When my daughter was at her worst, I couldn’t get rid of her pain completely. However, if I could help lower her pain even a little bit, she was able to function. Here is some of what I learned along the way.

Self-treatment

For six years, my daughter lived with chronic debilitating pain. Early symptoms included fever, neck stiffness and a migraine that would not subside. Two months later, she developed knee pain and swelling along with back and bone pain. Later, she said soles of her feet felt like she was walking on nails. Periodically, she suffered excruciating abdominal pain and nausea. And the list goes on…

The first year, she was too sick to leave the house, except for doctor and hospital visits. Luckily, as a Physical Therapist (PT), I could provide pain management treatment and modalities at home. Once she began to gain strength, after starting treatment for her infections, she started seeing an outpatient PT, who brought a whole new set of skills to the table. This also relieved me of my dual role as caretaker and healthcare provider—something I don’t recommend.

In the beginning, she was so weak I had to do everything for her. I would wheel her to the bathroom, bring her all her meals, help her get dressed–everything. The treatment I provided was limited to positioning for comfort, passive range of motion, gentle massage, hot/cold, taping/bracing, acupressure and craniosacral therapy. As she got stronger, she learned self-treatment techniques that she continues to use today.

Self-treatment approaches are generally low-cost and low-risk. You can do them on your own schedule in the comfort of your own home. It does require a commitment to changing your daily habits, but they can offer significant improvements in reducing pain and improving your quality of life.

Here are 12 things you can discuss as treatment options with your healthcare provider.

Diet

Most of the immune system originates in the gut. Literally, everything you put into your body is part of the healing process. Or not. You want to support the immune system without feeding inflammation. Fast food, artificial/processed foods, carbs, sugar, gluten, dairy and alcohol are common inflammatory triggers. In my mast cell activation syndrome (MCAS) series, I wrote about low histamine diets that help reduce the inflammation associated with MCAS.

Positioning

When you’re in pain, it can be difficult to find a comfortable position. When my daughter was at her worst, she found it difficult to breath when she was lying flat. We added 4-inch wooden blocks under the feet at the head of her bed, and a large wedge pillow to elevate her head. When her back was hurting, it also helped to  put a pillow under her knees.

You can get really creative with pillows. For instance, body pillows or “hug” pillows work well if you are a side sleeper.

While you are sitting, you may want to try out different size pillows or towel rolls for comfort. Putting a pillow on your lap to support your arms or one behind the small of your back may help. As a rule, you want to change positions every 30-60 minutes. This helps prevent pressure sores and muscle stiffness.

Some people find it worth their while to rent a hospital-type bed, where the head and/or feet can be elevated.

Assistive devices

Wheelchairs, walkers, canes, bath/shower chairs, long-handled reachers (sometimes called grabbers) are all good examples of assistive devices. Items like tray tables, lap tables, bath caddies, tote bags or tinted reading glasses can also make life easier.

Other things designed for reducing pain may include ace bandage wraps, shoulder sling, wrist, knee or ankle braces and shoe orthotics. You may also find over-the-counter topical pain relievers or CBD oil to be helpful. There are stronger topical pain relievers available by prescription.

Pacing

When you are sick you must be very conservative with energy expenditure. Modifying or changing your activities so they do not aggravate your symptoms is extremely important. Restricting, reducing, or spacing out your activities can help reduce pain and fatigue.

The key is to know your limits and stay within them. Pacing is similar to the concept of the “Spoon Theory” where you are only given a small supply of spoons to use each day—so use them wisely. When you are sick is not the time to try to push past the pain. In our house, we found sticking to a schedule that we affectionately call “Groundhog Day” helps to keep the pace.

Active range of motion (ROM) is a simple activity that almost anyone can do, whether lying down, sitting or standing. It helps to bring blood flow to the extremities and maintain or increase flexibility. The idea is to move every joint in the body through its full range. One example is to fully spread your fingers open, then fully close your fist. I recommend starting with the neck and working your way down to shoulders, elbows, wrists, torso, hips, knees, then feet.

If you are extremely de-conditioned, getting in/out of the shower and washing your hair may count as your active range of motion for that day. However, some people may be too weak or in too much pain to move at all. For these people, someone else must assist them with moving the extremities. We call this passive range of motion. While motion is important, the main goal is to make the pain better not worse.

Gentle exercise

Activity in any form can help improve mobility which may help reduce pain. Too much (or the wrong) activity can also make things worse. Once you are able, gentle exercise programs like, walking, stretching, yoga, tai chi, Pilates, and pool therapy can be a great benefit. To begin with, I recommend adding light weights (1-3 lb household items like broom handles or cans of soup work fine) to your ROM stretches.

“Sunlight Chair Yoga” is a type of adaptive yoga you may want to look at.

Meditation and mindfulness

Yoga stresses the value of deep breathing. Deep breathing involves the diaphragm, a dome-shaped muscle that forms the floor to the lungs. Such breathing is also essential to meditation and mindfulness.

The key to diaphragmatic breathing is to focus on deep relaxation and making the exhale portion of your breath twice as long as the inhale.

Meditation and mindfulness can help reduce stress and physiological responses to stress, which in turn, can help reduce pain. I suggest starting with something like Jyothi meditation, which involves simply gazing at a candle.

Stress reduction

Creating art, journaling, gardening, reading a good book, even just sitting outdoors and listening to the sounds of nature can help distract from pain. Research has shown that music helps the brain release dopamine our “feel-good” hormone. The important thing is to find something that, gives you hope, brings you joy or something you are grateful for each day.

Hot/cold therapy

For this I recommend getting a “moist” heating pad and ice pack from your local pharmacy and use as directed. Heat can help relax muscle tightness and improve circulation. Cold can reduce inflammation and numb an area of localized pain.

I usually recommend 10-20 min of moist heat for stiffness, and 10-15 min of cold for pain. Certain types of pain may respond better to one than the other, or you may find alternating hot/cold works best. (Note: If you have problems with blood clotting, bleeding or impaired circulation, you should check with your medical provider before using hot/cold.)

Epsom salt

Epsom salt is a combination of magnesium, sulfur and oxygen ions known as magnesium sulfate. Most of the benefits of Epsom salt come from the magnesium, one of the most important minerals in the human body. A magnesium deficiency will create an electrolyte imbalance and can also lead to calcium and/or potassium deficiencies. Among other things, magnesium helps your body produce melatonin and certain neurotransmitters needed for sleep.

I suggest purchasing Epsom salt from your local pharmacy or other reputable supplier to ensure the highest quality and use as directed. Add the salt to a warm bathtub or foot bath. In as little as 15 minutes, it can help relax muscles, improve circulation, loosen joint stiffness, relieve pain and promote calm.

I like to add a few drops of lavender or use a diffuser for additional aroma therapy during bath time. If you don’t have access to a bath or don’t tolerate heat, magnesium can be purchased in gel form and rubbed on your skin.

Getting enough sleep

If you’ve had or have Lyme, you are likely no stranger to insomnia. During the first year of my daughter’s illness, her symptoms would peak after midnight, making it impossible for her to fall asleep until around 6 a.m. Essentially, her days and nights were reversed.

I can tell you from experience, there are a lot of standard techniques for improving sleep hygiene that simply DO NOT work for Lyme patients. So, while you are trying to turn things around, my advice is to sleep when you are tired and nap whenever possible. Even if you can’t sleep, it’s important to lie down. You need at minimum 8 hours of rest every day. Also talk to your doctor about adding a low dose of melatonin.

Other Integrative and Restorative therapies

Modalities to help improve strength, mobility, and flexibility can help to relieve pain temporarily. Over time, improved function may help reduce the underlying cause of the pain. I am a big fan of hands-on treatment by a trained professional.

The following is a partial list of therapies you might consider.:

  • Acupuncture
  • Acupressure
  • Aquatic therapy
  • Biofeedback or neurofeedback
  • Bowen therapy
  • Chiropractic
  • Cognitive behavior therapy
  • Craniosacral therapy
  • Dry needling
  • Feldenkrais method
  • Injections or nerve blocks
  • Kinesiology taping
  • Lymphatic drainage massage
  • Massage therapy
  • Medications (as prescribed by your physician)
  • Neuromuscular electrical stimulation
  • Nutritional counseling
  • Occupational therapy
  • Osteopathic medicine
  • Physical therapy
  • Pilates
  • Postural training
  • Psychotherapy
  • Qi gong
  • Reflexology
  • Reiki
  • Support groups
  • Traction
  • Transcutaneous electrical nerve stimulation (TENS)
  • Ultrasound therapy
  • Vagus nerve stimulation

Laughter is the best medicine

Last but not least I do believe the key to happiness is laughter. Laughter reduces stress hormones like cortisol and releases endorphins, the body’s natural pain reliever. My simple advice is to avoid things that cause you stress, fear or anger.

Watch comedy or movies with happy endings. Stay connected with someone you can be honest with, one who listens and can make you laugh. Above all else, never give up hope.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. In 2019-2020, she served on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .

Melinda

References:

Dahlhamer J, Lucas J, Zelaya, C, et al. (2016) Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults — United States. MMWR Morb Mortal Wkly Rep 2018;67:1001–1006. DOI: http://dx.doi.org/10.15585/mmwr.mm6736a2

Aucott JN, Rebman AW, Crowder LA, Kortte KB. (2013) Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? Qual Life Res. 22(1):75-84. doi: 10.1007/s11136-012-0126-6.

Raja, Srinivasa N.a,*; Carr, Daniel B.b; Cohen, Miltonc; Finnerup, Nanna B.d,e; Flor, Hertaf; Gibson, Stepheng; Keefe, Francis J.h; Mogil, Jeffrey S.i; Ringkamp, Matthiasj; Sluka, Kathleen A.k; Song, Xue-Junl; Stevens, Bonniem; Sullivan, Mark D.n; Tutelman, Perri R.o; Ushida, Takahirop; Vader, Kyleq (2020) The revised International Association for the Study of Pain definition of pain: concepts, challenges, and compromises, PAIN 16(1):1976-1982 doi: 10.1097/j.pain.0000000000001939

What is Hypocalcemia? My latest diaognosis
Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Self-Care

What is Hypocalcemia? My latest diaognosis

Looking for the Light3 Comments

Earlier in the month I was diagnosed with persistent Hypocalcemia. The lack of calcium can cause many problems but the most troubling to me at this time is more Osteoporosis which I already have in my hip and heart complications, which I already have several heart issues.

Like everyone my appointment was pushed out and we wait out the social distancing to get back to normal. I’m lucky that I don’t have the worst symptoms yet.

Hypocalcemia (Calcium Deficiency Disease)

What’s calcium deficiency disease?

Calcium is a vital mineral. Your body uses it to build strong bones and teeth. Calcium is also needed for your heart and other muscles to function properly. When you don’t get enough calcium, you increase your risk of developing disorders like:

Children who don’t get enough calcium may not grow to their full potential height as adults.

You should consume the recommended amount of calcium per day through the food you eat, supplements, or vitamins.

What causes hypocalcemia?

Many people are at an increased risk for calcium deficiency as they age. This deficiency may be due to a variety of factors, including:

  • poor calcium intake over a long period of time, especially in childhood
  • medications that may decrease calcium absorption
  • dietary intolerance to foods rich in calcium
  • hormonal changes, especially in women
  • certain genetic factors

It’s important to ensure proper calcium intake at all ages.

For children and teenagers, the recommended daily allowances for calcium are the same for both sexes. According to the National Institutes of Health (NIH), the daily allowances are:

According to the U.S. government’s dietary guidelinesTrusted Source, calcium requirements for adults are:

Women need to increase their calcium intake earlier in life than men, starting in middle age. Meeting the necessary calcium requirement is particularly important as a woman approaches menopause.

The hormone disorder hypoparathyroidism may also cause calcium deficiency disease. People with this condition don’t produce enough parathyroid hormone, which controls calcium levels in the blood.

During menopause, women should also increase their calcium intake to reduce the risk of osteoporosis and calcium deficiency disease. The decline in the hormone estrogen during menopause causes a woman’s bones to thin faster.

Other causes of hypocalcemia include malnutrition and malabsorption. Malnutrition is when you’re not getting enough nutrients, while malabsorption is when your body can’t absorb the vitamins and minerals you need from the food you eat. Additional causes include:

  • low levels of vitamin D, which makes it harder to absorb calcium
  • medications, such phenytoin, phenobarbital, rifampin, corticosteroids, and drugs used to treat elevated calcium levels
  • pancreatitis
  • hypermagnesemia and hypomagnesemia
  • hyperphosphatemia
  • septic shock
  • massive blood transfusions
  • renal failure
  • certain chemotherapy drugs
  • “Hungry bone syndrome,” which may occur after surgery for hyperparathyroidism
  • removal of parathyroid gland tissue as part of surgery to remove the thyroid gland

If you miss your daily dose of calcium, you won’t become calcium deficient overnight. But it’s still important to make an effort to get enough calcium every day, since the body uses it quickly. Vegans are more likely to become calcium deficient quickly because they don’t eat calcium-rich dairy products.

Calcium deficiency won’t produce short-term symptoms because the body maintains calcium levels by taking it directly from the bones. But long-term low levels of calcium can have serious effects.

What are the symptoms of hypocalcemia?

Early stage calcium deficiency may not cause any symptoms. However, symptoms will develop as the condition progresses.

Severe symptoms of hypocalcemia include:

Calcium deficiencies can affect all parts of the body, resulting in weak nails, slower hair growth, and fragile, thin skin.

Calcium also plays an important role in both neurotransmitter release and muscle contractions. So, calcium deficiencies can bring on seizures in otherwise healthy people.

If you start experiencing neurological symptoms like memory loss, numbness and tingling, hallucinations, or seizures, make an appointment to see your doctor as soon as possible.

How’s calcium deficiency disease diagnosed?

Contact your doctor if you have symptoms of calcium deficiency disease. They’ll review your medical history and ask you about family history of calcium deficiency and osteoporosis.

If your doctor suspects calcium deficiency, they’ll take a blood sample to check your blood calcium level. Your doctor will measure your total calcium level, your albumin level, and your ionized or “free” calcium level. Albumin is a protein that binds to calcium and transports it through the blood. Sustained low calcium levels in your blood may confirm a diagnosis of calcium deficiency disease.

Normal calcium levels for adults can range from 8.8 to 10.4 milligrams per deciliter (mg/dL), according to the Merck Manual. You may be at risk for calcium deficiency disease if your calcium level is below 8.8 mg/dL. Children and teens typically have higher blood calcium levels than adults.

How’s hypocalcemia treated?

Calcium deficiency is usually easy to treat. It typically involves adding more calcium to your diet.

Do not self-treat by taking a lot of calcium supplements. Taking more than the recommended dose without your doctor’s approval can lead to serious issues like kidney stones.

Commonly recommended calcium supplements include:

  • calcium carbonate, which is the least expensive and has the most elemental calcium
  • calcium citrate, which is the most easily absorbed
  • calcium phosphate, which is also easily absorbed and doesn’t cause constipation

Calcium supplements are available in liquid, tablet, and chewable forms.

Shop for calcium supplements.

It’s important to note that some medications could interact negatively with calcium supplements. These medications include:

  • blood pressure beta-blockers like atenolol, which may decrease calcium absorption if taken within two hours of taking calcium supplements
  • antacids containing aluminum, which may increase blood levels of aluminum
  • cholesterol-lowering bile acid sequestrants such as colestipol, which may decrease calcium absorption and increase the loss of calcium in the urine
  • estrogen medications, which can contribute to an increase in calcium blood levels
  • digoxin, as high calcium levels can increase digoxin toxicity
  • diuretics, which can either increase calcium levels (hydrochlorothiazide) or decrease calcium levels in the blood (furosemide)
  • certain antibiotics such as fluoroquinolones and tetracyclines, whose absorption can be decreased by calcium supplements

Sometimes diet changes and supplements aren’t enough to treat a calcium deficiency. In this case, your doctor may want to regulate your calcium levels by giving you regular calcium injections.

You can expect to see results within the first few weeks of treatment. Severe cases of calcium deficiency disease will be monitored at one- to three-month intervals.

What are the possible complications of hypocalcemia?

Complications from calcium deficiency disease include eye damage, an abnormal heartbeat, and osteoporosis.

Complications from osteoporosis include:

  • disability
  • spinal fractures or other bone fractures
  • difficulty walking

If left untreated, calcium deficiency disease could eventually be fatal.

How can hypocalcemia be prevented?

You can prevent calcium deficiency disease by including calcium in your diet every day.

Be aware that foods high in calcium, such as dairy products, can also be high in saturated fat and trans fat. Choose low-fat or fat-free options to reduce your risk of developing high cholesterol and heart disease.

You can get 1/4 to 1/3 of your RDA of calcium in a single serving of some milks and yogurts. According to the United States Department of Agriculture (USDA)Trusted Source, other calcium-rich foods include:

While meeting your calcium requirement is very important, you also want to make sure you’re not getting too much. According to the Mayo Clinic, upper limits of calcium intake in milligrams (mg) for adults are:

  • 2,000 mg per day for men and women 51 years of age and up
  • 2,500 mg per day for men and women 19 to 50 years of age

You might want to supplement your diet by taking a multivitamin. Or your doctor may recommend supplements if you’re at high risk for developing a calcium deficiency.

Multivitamins may not contain all of the calcium you need, so be sure to eat a well-rounded diet. If you’re pregnant, take a prenatal vitamin.

Vitamin D

Vitamin D is important because it increases the rate calcium is absorbed into your blood. Ask your doctor how much vitamin D you need.

To increase your calcium intake, you can add food rich in vitamin D to your diet. These include:

  • fatty fish like salmon and tuna
  • fortified orange juice
  • fortified milk
  • portobello mushrooms
  • eggs

As with calcium-rich dairy products, some vitamin D-rich dairy products can also be high in saturated fat.

Sunlight triggers your body to make vitamin D, so getting regular exposure to the sun can also help boost your vitamin D levels.

Melinda

What is Hypogammaglobulinemia?
Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health

What is Hypogammaglobulinemia?

Looking for the Light10 Comments

I’ve recently been diagnosed with the immune disorder Hypogammaglobulinemia which requires the expertise of an Endocrinologist. My doctor isn’t sure how I contracted it since I don’t fit any noted categories. 

Infusion treatments may become necessary for Hypogammaglobinemia, some patients only require one treatment and others require ongoing infusion treatment for life.

Photo by Pixabay on Pexels.com

Overview

Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi.

Without enough antibodies, you’re more likely to get infections. People with Hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system would normally protect against. These infections can damage organs and lead to potentially serious complications.

Causes

Several gene changes (mutations) have been linked to Hypogammaglobulinemia.

One such mutation affects the BTK gene. This gene is needed to help B cells grow and mature. B cells are a type of immune cell that makes antibodies. Immature B cells don’t make enough antibodies to protect the body from infection.

THI is more common in premature infants. Babies normally get antibodies from others through the placenta during pregnancy. These antibodies protect them from infections once they’re born. Babies that are born too early don’t get enough antibodies from their mothers.

A few other conditions can cause Hypogammaglobulinemia. Some are passed down through families and start at birth (congenital). These are called primary immune deficiencies.

They include:

  • ataxia-telangiectasia (A-T)
  • autosomal recessive agammaglobulinemia (ARA)
  • common variable immunodeficiency (CVID)
  • hyper-IgM syndromes
  • IgG subclass deficiency
  • isolated non-IgG immunoglobulin deficiencies
  • severe combined immunodeficiency (SCID)
  • specific antibody deficiency (SAD)
  • Wiskott-Aldrich syndrome
  • x-linked agammaglobulinemia

More oftenTrusted Source, Hypogammaglobulinemia develops as a result of another condition, called secondary or acquired immune deficiencies. These include:

Certain medications can also cause hypogammaglobulinemia, including:

  • medicines that suppress the immune system, such as corticosteroids
  • chemotherapy drugs
  • antiseizure medications

Treatment options

If your Hypogammaglobulinemia is severe, you may get Immune Globulin replacement therapy to replace what your body isn’t making. You get this treatment through an IV. The immune globulin comes from the blood plasma of healthy donors.

I’ll keep you posted. 

Melinda

 

Agoraphobia Is Not Logical
Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Moving Forward

Agoraphobia Is Not Logical

Looking for the Light19 Comments

Whatever this obstacle is, it started 18 months ago, there wasn’t a moment I can pin this inability on. Inability is the right word, I’m not afraid to leave the house, I’ve driven a few times in the past year, I know how to drive and live in the same town.

Yet I have my husband take me to all my appointments even if there just a mile or two away. I never feel nervous when we’re getting ready to go, no uncomfortable feelings on the way there and no sigh of relief when we’re back home.

For the longest time, I denied I had Agoraphobia but now understand people drive while suffering from Agoraphobia. The famous Chef Paula Dean was Agoraphobic for years, she drove and took care of business as needed but she feared it, didn’t want to drive, couldn’t even walk around the block at one point. Her book helped me understand you can function but it still didn’t convince me I have Agoraphobia.

I feel tremendous pressure to drive to my doctor’s appointments so my husband won’t have to take off work. He has to take an average of five days a month to drive me, sometimes very short distances. Even thou he’s been with the company 20 years that is still a lot of days off. I hate to think of how many days off since 2012 when I first got sick.

There is only one factor I can come up with, my dementia. I have lost big chunks of knowledge, simple things like where I used to go shopping. I don’t remember how to get there. One other factor is our city has grown so big since I got sick nothing looks the same. We passed a restaurant we use to frequent and I barely noticed it because everything had grown around it.

I’m not sure I could drive the 30 miles to my grandparent’s house. I had to really think hard about what streets I would take, exits, what freeways and then doing in reverse. My husband said he wouldn’t feel comfortable with me driving to their house.

I am afraid of getting lost, not being able to take care of myself as before or forgetting my phone, which I did the first appointments I drove to. Not only did I get lost but forgot my phone. Another small part is I have a different car than before. My previous car was a sexy BMW hot rod and I knew how fast it could get to the on the freeway ramp. I now have a Suburu which is really cool but not the same get up and go. I’m still adjusting to how fast I have to turn in front of someone and all the good things you learn when you get a new vehicle. My Suburu is two years old and has 1300 miles on it. I have driven about 15 of those miles.

Does any of this make sense, is the real issue my dementia and I’m trying to avoid admitting?

Please give any feedback you have, I want to hear every thought and idea. Thanks a million.

Melinda

Repost from 2019

Children · Chronic Illness · Family · Health and Wellbeing · Medical

MANAGING FIBROMYALGIA IN CHILDREN

Looking for the Light1 Comment

Welcome to Remedy, a blog by U.S. Pain Foundation. Remedy aims to provide people with the support they need to thrive despite chronic pain. It features the information about promising treatments, tips and strategies for self-management, resources for coping with the emotional and social effects of pain, unique perspectives from patients, clinicians, and caregivers–and much more. To submit an article idea, email contact@uspainfoundation.org.

Posted: January 14, 2019

 

By Brent Wells, DC, a chiropractor and founder of Better Health Chiropractic and Physical Rehab

If your child feels tired and achy, you may not worry initially. After all, there’s nothing urgent about what seems to be mild, general discomfort. However, if your child is constantly in pain, exhausted, having trouble sleeping, and experiencing intense moods, he/she may have fibromyalgia.

This condition is fairly common in adults, but parents and clinicians may overlook the possibility of juvenile primary fibromyalgia syndrome — that is, fibromyalgia in children.

JUVENILE FIBROMYALGIA SYMPTOMS TO WATCH OUT FOR

Fibromyalgia is a chronic condition characterized by pain and fatigue. According to experts, children will often describe this pain as “stiffness, tightness, tenderness, burning or aching.” This pain can last for months and is often accompanied by other symptoms that affect a child’s overall well-being, energy level, and emotional health, including:

  • Tender spots on muscles
  • Difficulty sleeping and fatigue
  • Aches, including stomachaches and headaches
  • Lack of focus or memory
  • Anxiety and depression

If your child is experiencing these symptoms, you should see a doctor. There’s not one test to confirm it, so he/she will go through a range of tests to rule out other conditions.

Unfortunately, there is no one “cure” for fibromyalgia, which can be frustrating for patients, especially children. If left untreated, symptoms can lead to issues at school or making friends. Many parents describe this as a “vicious cycle” where symptoms continue to feed the condition.

Experts still aren’t sure what causes fibromyalgia or how it develops in the body. Some believe that mixed-up pain signals in the brain cause greater pain chemicals and/or overactive pain receptors. Others think it might be triggered, in part, by an emotional event like an illness, injury or psychological stress. But even if the cause involves emotions, the pain is still real.

HOW CHILDREN CAN COPE WITH FIBROMYALGIA

It’s important to create a support team and get your child’s primary care doctor, pain specialist, psychologist, physical therapist, and teachers on board. The more people are aware of your child’s condition, the more they can help him/her cope with symptoms at home and school. You may also want to look for pain support groups near you, for both your child and you as a parent.

Your doctor can help you decide whether medication, such as anti-inflammatories, antidepressants, or nerve pain medications, may be right for your child. He or she also may recommend therapies like injections or topical creams. In conjunction with these interventions, your doctor will probably prescribe treatments like physical therapy and behavioral changes, which are crucial to long-term management of fibromyalgia.

Let’s go over some nonpharmacological strategies for coping with fibromyalgia.

FIVE STRATEGIES FOR IMPROVED SYMPTOMS

Although fibromyalgia may disrupt your child’s life, affecting school and friendships, you may be able to improve your child’s quality of life with these natural therapies and changes. Of course, there’s no cure for fibromyalgia, but by managing symptoms, you can help your child get back to some sense of normalcy.

  1. Get moving!

Exercise can be incredibly valuable for managing your child’s fibromyalgia symptoms. Exercise can relieve muscle stiffness and tire out the body physically so that your child can fall asleep more easily. In particular, pool exercises have been shown to help patients because the warm water can have a soothing effect on pain and also promote blood circulation.

Consider signing up your child for swim class to get regular exercise that is both fun and good for symptoms. Start with limited intervals of exercise at first, and slowly increase them as symptoms allow. Aquatic physical therapy can be extremely beneficial for patients whose fibromyalgia is too severe for regular pool activities.

  1. Incorporate meditation methods

While your child may not be interested in meditation, try to incorporate some of the practices in your child’s daily life. After playtime, encourage your child to take a moment to relax and reset. In addition, teach your child how to use relaxing breathing exercises when he/she feels overwhelmed during school or before bed.

Studies show that meditation can help reduce fibromyalgia patients’ stiffness, anxiety and depression. In the least, promoting a stress-free environment and creating a sense of relaxation will help your child feel less anxious.

  1. Say goodnight to fibromyalgia

Your child’s sleep routine is essential for improving fibromyalgia symptoms. Chart out the best routine for your child together. Make sure he/she goes to bed at the same time every day and start “sleep-ready” habits an hour before bed. This routine could include a break from screen time, reading a story together, listening to a relaxing song and/or taking a hot bath. Promoting a relaxing environment will help your child get to sleep.

Make sure you’re not giving your child food late at night, especially items with any caffeine or sugar. Also, be sure take away tablets and cell phones. The blue light can wake up your child instead of helping him/her get sleepy. Sufficient sleep is essential to managing pain.

  1. Change your child’s diet for success

Some experts recommend following an anti-inflammatory diet to prevent aches and pains. In general, an anti-inflammatory diet is based on the Mediterranean diet, which emphasizes fish, fish, vegetables, whole grains, and olive oil.

Update your child’s lunch to include a handful of nuts, or add an apple for a snack. Anytime you can add fruits and vegetables to his/her diet, do it! This boost of nutrients will fuel your child for success. Try to limit junk food as well, which has no value and could actually inflame your child’s pains.

  1. Schedule your child for a physical therapy session

Your child could benefit from seeing a physical therapist or chiropractor near you. Recent studies show how physical therapy or chiropractic can have a positive impact on fibromyalgia patients. Finding the right physical therapist is important. Call in advance to ensure they have experience with fibromyalgia and/or with children. Specific exercises in physical therapy can help to improve your child’s core strength and incorporate techniques to soothe muscle aches and pain. Similarly, regular massage therapy sessions with an experienced masseuse can improve your child’s exercise, sleep and mood.

TALK TO YOUR DOCTOR

A fibromyalgia diagnosis can be challenging, but doesn’t have to take over your child’s life. It’s a good idea to talk to an expert to come up with the most effective care plan for your child, one that ideally includes a diverse range of strategies, like those listed above. Together, you can talk about your child’s specific issues and needs, and figure out the best way to improve symptoms.

About Dr. Brent Wells

Dr. Brent Wells is a graduate of the University of Nevada where he earned his bachelor of science degree before moving on to complete his doctorate from Western States Chiropractic College. He founded Better Health Chiropractic and Physical Rehab in Anchorage in 1998. He became passionate about being in the chiropractic field after his own experiences with hurried, unprofessional healthcare providers. The goal for Dr. Wells is to treat his patients with care and compassion while providing them with a better quality of life through his professional treatment.

Melinda

 

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Dr. Jemsek “Speaks the Truth”About Lyme Disease

Looking for the Light3 Comments

Dr Jemsek is an Infectious Disease Doctor who played a pivotal role identifying AIDS in N. Carolina. He is my hero and Lyme Doctor.

 

There are several treatment methods, every doctor is different. I’m on Antibiotic IV Therapy 5 days a week, and a Lactose Ringer when not on IV Therapy, close to 30 supplements, a Morphine Patch, two horrible liquid Rx’s, and close to 35-40 prescriptions.

YouTube is an awesome source for Lyme information.

Xx  M

Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Survivor · Tick Borne Illnesses

Lyme Journal Entry Eleven *Lyme Winning Me..Mad As Hell*

Looking for the Light15 Comments

Wild Crazy Hair
Wild Warrior Hair

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Four months ago I wrote the last Lyme Journal Entry. I thought my strength would allow me to blog through the illness. Then the 5-6 month point turned my life upside down and it’s been hell. I fired my Lyme doctor and not taking meds at this time. I know many are wondering why the hair photo? I was losing hair by the handful and showering was nearly impossible with longer hair. When you can’t stand, lift your arms or sit down without falling, showering is a problem. I planned a nice Army shave but David would not help. I grabbed the scissors and cut eight inches off. Feels great, looks like crap. Who cares? 

I’m sure people have noticed my positive attitude is quickly sliding. The mounting problems are not all Lyme-related. My cat Truffles is dying, lack of communication from my doctor, getting so sick, and walking some days is extremely painful. Our bed was too hard so I moved to a couch months ago. I live on the couch now. Not bad for sleeping except all the animals want to go out, poke me in the back, and the cat wants to attack me. Even attempting to get enough sleep is impossible. With Chronic Lyme Disease sleep is your best friend and a key to survival.

 Let me share some Lyme politics for newbies.

Most of the expert Lyme Literate Doctors, are not practicing. Several years ago doctors were watching people die using CDC standards, which state patients can only receive 2-4 weeks of antibiotics at most.  The Lyme doctors who understood how the viruses worked knew 4 weeks was a joke. The doctors worked together helping each out calling in antibiotics for the other patients. I have Chronic Lyme, and it can take 1-3 years to get well. Medication is one of the many ways to heal. Getting enough sleep is number one after the meds., take supplements, gluten-free diet and eat foods to help your body heal. No Coffee and drink only electrolyte water. 

There was a huge division among Lyme doctors when the CDC allowed several doctors to patent the virus. Makes no sense to me. For years patients were clueless of the division. Both sides fought hard with the CDC to prove their data, from the videos on YouTube it looks like the battle was lost before the presentations started. The expert Lyme Literate doctors were quite vocal and a witch hunt is what followed the meeting. Doctors appeared before the Medical Board and were not able to practice, some for up to a year. Several doctors lost their clinic and everything they owned trying to keep their patients alive. It is a complete mess the CDC let happen, needless to say, I’m pissed. Just a little more background info to burn into your brain.

Many Chronic Lyme patients become so sick they are not able to work. The first reality is you no longer have insurance and can not afford new insurance if you could buy. I’ve watched video after video on YouTube of people with good-paying jobs, racking up several thousand dollars in doctor bills and many having to file bankruptcy, losing everything. One video told of a couple who owed their parents $500,000. Lyme affects everyone in your family, friends, your health, and financial security.

It’s going on Spring in some parts but summer will be here quickly. I don’t want any of you or your family members to struggle with a virus that looks like a worm. The viruses travel through the blood until they can find a way to your major organs. Lyme likes to get cozy in the liver, kidney, heart, and brain. I have three tick-borne illnesses and Epstein Bar Virus. I have cognitive issues, my eyes constantly see things moving by my peripheral vision and balance are fleeting. I was in the bathroom two days ago about to reach for the medicine cabinet. I slammed into a wall hurting my writs and several fingers. If that wasn’t enough I slid down the wall falling on the toilet and hurt my leg. The doctors don’t know how much of your ability will come back if any. You have to keep fighting.

Why I fired my doctor. My husband and I formed an impression at the first appointment, not so good. I was desperate to start treatment and had no other options.

* I start a couple of drugs until the Lab work is back. At the follow-up appointment, the first words out of his mouth are you are in a great deal of pain. REALLY? His communication and organization skills are lacking. No pain meds were prescribed. He has to call someone in to bring him something several times during the appointment.

*I’m loaded down with over 50 pills to take a day plus 15-20 supplements and sleep all I can. The equation doesn’t work. I have gastro issues and the high-powered antibiotics made me nauseous all the time. I asked to have a PICC line in my arm to give my stomach a break. He did not plan to use a PICC line? Almost every patient gets a PICC line so they can fill you full of drugs and bypass your stomach. My wheels are turning. He had lab work for me to do, but I didn’t do it. He never asked about the Labs. He said my Lead levels were three times higher than normal, in the dangerous range. No follow-up test was ordered, it was like “So you know”. I’m scared, my brain is on overload, the test said current and ongoing exposure. I spent about two weeks looking for an answer. I looked at the top of the report one day, it wasn’t my report. Admin acted like no big deal. HIPPA laws are not new.

With the list of experts I start going down the list, ONE of the leading Lyme Literate Doctors still practices. The doctors called before the Medical Board and CDC. Now are full-time advocates/researchers. I phoned his office in DC and they are taking patients. When you have cognitive issues filling out 50 pages is crazy. I stayed up last night to get everything I could without waking my household. With God’s help, I will finish the paperwork tomorrow and get an appointment in the next month.

ILADS is the professional organization Lyme Literate doctors belong to. I saw the tab on site for ILADS Protocol on Lyme. I jumped for joy. Let’s hit them with our best shot. We have boxing gloves on and the truth will come out. The document was extensive for the different stages of Lyme or other tick-borne illnesses. I felt so happy that others may not have to suffer shortly. The document was well-researched by leading scientists, leading hospitals, and large populations of people. I cheered when I read research that outlined how the current system is incorrect, and they went all out. On the issues of insurance, extensive research with real patients exposed what the CDC is keeping from the public. If you want to learn more about Lyme, YouTube has so many videos, you might not have to go anywhere else. If you like the medical jargon go to the ILADS site. 

A shout out to others who suffer from Lyme or tick-borne illness. I think of you, pray for you, and send good karma your way.

XO Warrior

Celebrate Life · Chronic Illness · Chronic Pain · Fun · Health and Wellbeing · Travel

What is on your Bucket List? 2015

Looking for the Light45 Comments

I had many adventures in my head and wrote my first Bucket List in 2015, it was invigorating to have it in writing yet I was struggling with Chronic Lyme and IV Therapy, my joy didn’t last until I went into remission years later.

A sincere thank you and a big hug for all the well wishes. I love hearing from you, you bring a smile on days when there are none. It will take a while but “I’ll Be Back”.   XO Warrior

BUCKET LIST STARTED 2015

Tango Lessons

Visit Germany where my family lived before coming to America

Dive again, in 1999 I had panic attack and have not tackled fear

Enjoy Argentinian Wine Country

Be a RAINN Advocate Speaker for Child Abuse and Rape

Volunteer for RAINN to offer support to women while going thru Rape Kit process

Provide pastoral support as Ordained Minister with a focus on dying children and the elderly.

Swim with Manatees, Dolphins, and Sharks, Sharks only while in a cage.

Ride a Camel and Elephant in a native environment, treated ethically.

See every inch of Australia. Australia is several countries in one.

Hot air balloon ride through the French countryside.

Visit countries safe for American women traveling alone. To build confidence, I like to travel alone to foreign destinations. Germany, Istanbul, India, Dubai, and Alaska, that’s a good start.

Learn to rescue animals who coexist in our neighborhoods, like ducks, rabbits, owls, bobcats, and coyotes.

See fine Turkish rugs being made

See Silver Back Gorillas in Uganda

My organs save a life

I think seeing photos of past adventures will jack up my motivation.

 

Church of the Spilled Blood St. Petersburg, Russia
Church of the Spilled Blood  St. Petersburg, Russia

 

Sydney Opera House
Sydney Opera House

 

Gulf Shores, Alabama Sunset

 

Toys for Tots yearly Run

 

Melinda

If You Think You Know Lyme: It’s Time For a Serious Refresher Course
Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

If You Think You Know Lyme: It’s Time For a Serious Refresher Course

Looking for the Light19 Comments

Being diaognosed with Chronic Lyme Disorder in 2014/2015 changed my life and my husbands forever. After 18 months of IV Antibiotic Treatments, I survived, and in remission at this time. Since the spirokettes remain in your body, your body can continue to decline whether in remission or not.

Over a 12 months of testing, my Neurologist has performed every test in her arsenal except a spinal. Every test she ran came back abnormal yet not able to pin down a diagnosis. She refered me to a Rheumatologist to start on the tread mill again. I started researching illnesses which included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis or other autoimmune disorder. I didn’t think the answer would come from the crazy searches by using the abnormal test results and symptoms in every combination possible, I thought I had the answer and I did.

More reasearch and what I found was alarming, not the illness alone, the politics and witch hunt taking place. The illness is Lyme or other tick borne illnesses. The CDC rates Texas as med-high concentration. The east coast is at epidemic levels with some articles stating we are facing epidemic levels across the country. I had a different idea for this post yet feel it’s critical to get this information out ASAP. When I learned of the divide in the medical community over Lyme, I shook my head. What is the controversy? The CDC establishes treatment standards for doctors and the standard Lyme test is based on 30-year-old information. What happens is you go to doctor for a Lyme test, it comes back negative. You then find out the test is 30% +/- correct. The CDC acknowledges the test has false positives yet the standard for testing hasn’t changed.

With a lack of confidence in the test, I wanted to see a Lyme Literate Doctor. This blew my mind, a current day Salem Witch Hunt is happening. On one side of the controversy are doctors who specialize in Lyme and tick borne illness. If a tick bite is not caught right away it grows in your system. Lyme looks like a long skinny curly worm. It bores thru your body damaging your organs or brain depending where it lands. The symptoms can move around your body as the virus spreads. Lyme is hard to kill, it can encapsulate itself in an invisible cocoon and is near impossible to see under microscope. The Lyme doctors take the approach, attack the virus aggressively for long periods of time to prevent a relapse. People who are very ill from Lyme can require years of antibiotics. Not only to kill the virus more importantly to save your life.  Heres the rub, the CDC states 2 weeks of antibiotics will cure Lyme  and doctors can prescribe an extra 2 weeks if needed.

Medical insurance companies only pay what the CDC approves and the CDC doen’t recognized Chronic Lyme Dieases nor in IV treatments. Some Lyme doctors are getting called before the Medical Review Board having their license taken away for a year. Insurance companies are cancelling people’s policy and they are left with 150k+ in out-of-pocket expenses. There are many patients who have to lose their house or get their loved one treatment.

There are two main thoughst on Lyme Dieases, doctors that do not believe in Chronic Lyme Dieases and the others that do and are treating patients. The CDC hasn’t changed their rules on insuring Lyme treatments but I don’t think doctors are not under as big of a microscope.

When I decided to see a Lyme Literate doctor it was a process. I called the association, they took info on where I lived and would call back. The next morning I received a call with a doctor’s name and phone number. I later found out the doctor I’m seeing was the first to lose his licenses for a year. I didn’t know if I should jump for joy or not.

I’m battling over 50 symptoms on any given day from a tick that is smaller than a sesame seed. When you’re doing tick checks on you and the kids, ticks are hard to see. Around 30% to 50% of people get a bull’s-eye rash. If you get the rash go to the doctor right away and ask for a Lyme panel test.

Please remember to check your scalp, they can hang out in your hair. A flashlight might help with this task. I’ll keep you up to date on how my appointment goes. I’m not worried about what, I need an answer to move on to the next hurdle. I will do a f/u post including more information about treatments.

Melinda

Repost