Here’s what you need to know about using generic medications for bipolar disorder, how they compare to brand names, and some useful tips for managing medication changes.
If you or your loved one has been switched to a generic medication for bipolar disorder or are considering making the change yourself, it’s natural to feel unsure. You might wonder whether these more affordable options can truly match the brand names you’ve relied on — especially with all the mixed messages out there. I’ve been through this myself when my pharmacy replaced my Lamictal with generic lamotrigine, and I understand the anxiety and disappointment that can come with such unexpected changes. Let’s dive into the details of brand names and generics.
Unraveling the Generic vs. Brand Mystery
In 2008, I did some heavy research on the topic of brand name versus generic medications when my brand name Lamictal medication was switched to generic lamotrigine. It was very obvious within the first few weeks that the medications were not the same.
I naturally asked my pharmacist and colleagues, “Why does it feel like the generic medication I just tried is not working as well as the brand name medication?” Their responses varied widely, and no one really had a clear answer. I was told, “The pills should be the same.”
As a person who has bipolar disorder and a psychotic disorder, I could physically tell that this newly approved generic (lamotrigine) was not as effective as the brand name I had been on for more than a year. This was in 2008 when GlaxoSmithKline’s Lamictal lost its patent, and the generic drug (lamotrigine) became available.
I knew there was an answer, so I started digging. I had many resources at my fingertips. I was a regular presenter at a well-known pharmacy school and could also talk to my psychopharmacology expert and coauthor, John Preston, PsyD. I even had contact with sales reps for GlaxoSmithKline.
But despite all these resources, I received different answers.
I eventually found an answer that everyone agreed with, and I share it with you now as a change to generic medications affects so many of us who live with or care about someone with a brain illness.
I’ve since tested this information with many of my clients whose loved ones faced a change from a brand name to a generic medication and have found the following to be a safe approach to the topic.
What’s the Main Difference Between Brand Name and Generic Medications?
Here is the short answer: Medications have two components — active ingredients and the vehicle used to get these ingredients into your body. The active ingredients are the original chemical compounds that make the drug effective. The vehicle is added to deliver the active ingredients into your system and can be in the form of a pill, cream, or shot. When you take a brand name medication, both the active ingredient and the vehicle are consistent with each prescription. For generics, the active ingredients must be the same worldwide, but there are no regulations for the vehicle. This is where there can be problems.
The main difference between generic and brand-name medications is how the active ingredients are delivered into the body using a vehicle.
Active Ingredients Are the Same in Brand Name and Generic Drugs
The term active ingredients refers to the original chemical compounds that make the drug effective.
According to the U.S. Food and Drug Administration (FDA), the active ingredients in a generic medication must be the same as those in the brand-name equivalent.
These active ingredients are proprietary in the United States for up to 20 years under a patent.
When the patent expires, the drug’s active ingredients recipe becomes available for use in generic medications.
The Vehicle Can Differ Widely Between Brand Name and Generic Drugs
The vehicle delivers the active ingredients into the human body.
The vehicle includes added ingredients that are combined with the brand name active ingredients to create a usable pill, capsule, shot, cream, or suppository.
Also known as carrier systems, vehicles play a crucial role but are not regulated as strictly as the active ingredients.
This difference in regulation can lead to variations in how generic medications perform compared to their brand name counterparts.
Strategies to Manage a Change to Generics
Here are some practical tips to help you or your loved one adjust to a new generic or determine if you need a medication adjustment from your prescriber:
Chart the reactions to the brand name versus the generic medication. Always carefully chart new medications, especially any change from a brand name to a generic. If you or a loved one isn’t doing well on a generic that is the same dose as the brand name, use the information in this article to get the help you need.
Give generics time. It may be that the medication needs more time to get into the system.
Use a different generic manufacturer. The pharmacist can help you find the country of origin and choose a different producer of the same generic.
Talk with the prescriber. If there is still a consistent problem with the generic, petition the insurance company or disability service and explain the situation in order to return to the brand name or try a different medication. After a year of the generics being on the market, you can try the generics again.
Figuring out bipolar medications takes time and requires a lot of support. Still, ultimately, the goal is to manage as many symptoms as possible using behavior and lifestyle changes so that medications can be taken at lower and more sustainable doses.
For now, start by charting the dosage and source of medication, and if this changes in any way, carefully note any changes in symptoms. It’s much easier for a caregiver to notice changes than the person who is ill, especially if a generic isn’t working, as well as a brand name for mania or psychosis. You can then use your observations to help a loved one get the medication support they need.
Overall, generics are far more economical than brand name medications, and if this means they can offer more access to those who need them, generics are a positive in our bipolar world.
By understanding the full scope of how medications are created and regulated, we empower ourselves to make informed decisions that enhance our health and well-being.
Julie A. Fast is the author of the bestselling mental health books Take Charge of Bipolar Disorder, Loving Someone with Bipolar Disorder: Understanding and Helping Your Partner, Getting It Done When You’re Depressed, OMG, That’s Me! (vol. 2), and The Health Cards Treatment System for Bipolar Disorder. She is a longtime bp Magazine writer and the top blog contributor, with over 5 million blog views. Julie is also a researcher and educator who focuses on bipolar disorder prevention and ways to recognize mood swings from the beginning—before they go too far and take over a person’s life. She works as a parent and partner coach and regularly trains health care professionals, including psychiatric residents, pharmacists, general practitioners, therapists, and social workers, on bipolar disorder and psychotic disorder management. She has a Facebook group for parents, The Stable Table, and for partners, The Stable Bed. Julie is the recipient of the Mental Health America excellence in journalism award and was the original consultant for Claire Danes’s character on the TV show Homeland. Julie had the first bipolar disorder blog and was instrumental in teaching the world about bipolar disorder triggers, the importance of circadian rhythm sleep, and the physical signs of bipolar disorder, such as recognizing mania in the eyes. Julie lives with bipolar disorder, a psychotic disorder, anxiety, and ADD.
It’s so refreshing to hear the affirmation of what I and so many others go through. I had an issue in the 90’s with Wellbutrin 300. The main manufacturer of the generic version did not complete the studies correctly. They also made a 150mg tablet and when it came to testing the 300mg they only double the 150mg study and did not actually study it. The calculation was wrong and those who took the medication suffered for years before they admitted what they did. The manufacturer and the FDA failed because the FDA is required to study the results of all tests to make sure the higher doses are as effective as they say they are. The manufacturer was no longer able to sell their drugs in The United States and banned from future sales. The situation is different and only applied to one manufacturer but it’s still important for everyone who takes generics to understand how they work differently, make informed decisions, and log how the medication is working or not when you start a new generic after taking the brand name.
The National Academies of Sciences, Engineering, and Medicine (known collectively as NASEM) are private, nonprofit institutions that examine challenging issues and offer advice to the nation.
Academy members are elected based on their outstanding achievements and contributions to their fields. They are considered the cream of the cream.
NASEM works by convening committees of experts from various fields to study specific topics. Sometimes, these committees organize workshops to bring together experts, policymakers, and the public to share knowledge and explore solutions.
That’s what happened July 11, in Washington DC. A NASEM committee held a workshop examining the question of what they called “Lyme infection-associated chronic illness”—or “Lyme IACI.” (Pronounced “Lyme eye-ACK-ee” by most participants, it doesn’t exactly roll off the tongue, does it?)
Apparently, Lyme IACI is the label the committee landed on to avoid the polarizing effects of such terms as “chronic Lyme” or “post-treatment Lyme disease syndrome.”
Based on input from this public workshop as well as a review of medical literature, the committee will develop a report of its findings. This document will put forth recommendations for how to bring about better treatments for people with Lyme IACI.
You may remember that NASEM held a groundbreaking workshop last year that focused on the commonalities of several “long haul” diseases—long COVID, persistent Lyme disease, multiple sclerosis and ME/CFS (chronic fatigue). Read more about last year’s event here: “Words matter.” A new way of thinking about long-haul diseases.
The 2024 conference continued in that vein, but this time focused only on Lyme IACI. The event was significant on several fronts.
Why this matters
For starters, you had important scientists exploring the question of why some people with Lyme disease continue to have symptoms despite treatment. This major change comes after decades of “Lyme denialism,” when medical professionals, health officials, researchers, the NIH, and the CDC, all told us that what we call “chronic Lyme” didn’t even exist. So, just the fact that you have a NASEM committee considering the issue is a huge step forward.
Furthermore, the Lyme community actively participated in the event.
Retired US Air Force Col. Nicole Malachowski—a prominent advocate for those with tick-borne disease—served on the workshop’s planning committee.
Rhisa Parera, the writer/director/producer of the Lyme film “Your Labs are Normal,” delivered a keynote address on the patient perspective.
The committee lined up an impressive array of researchers from prominent academic centers to shed light on the following questions:
Describe the current state of Lyme IACI research for treatments and diagnostics to clarify barriers in development of new, effective therapeutic interventions;
Explore recent advancements from other biomedical research fields with the potential to address these barriers by catalyzing scientific breakthroughs or translation of discoveries to treatments;
Understand patient-defined priorities for research and discuss potential opportunities for engaging this perspective in developing a biomedical research agenda; and
Discuss research strategies and infrastructure that could facilitate the application of innovations from other fields into the Lyme IACI research context.
LymeDisease.org CEO Lorraine Johnson, principal investigator of the MyLymeData project, spoke on a panel about patient-defined priorities for research.
Lorraine Johnson, Principal Investigator of MyLymeData
She emphasized the importance of outcomes that patients themselves care about—namely, getting their health back and being able to return to work and other activities.
But that’s often not the way clinical trials are structured. For example, many are geared to evaluating something called the SF-36 score.
“However, a change in the SF-36 score is not inherently meaningful or important to patients,” Lorraine noted. “This is obvious on its face. If you ask any patient what they want in healthcare – none of them will say, ‘I want to improve my SF-36 score.’”
Videos from the workshop should be available soon. When they are, I strongly recommend you watch Lorraine’s presentation. I think you’ll find it riveting.
Thank you for all the great feedback on the Blogger Highlight series, I’ve enjoyed meeting each blogger and sharing their site with you. This week we highlight Invisibly Me. Caz and I have known each other for years and I’m honored to call her a friend. She is a warrior in every sense of the word, she works tirelessly to balance her chronic illness, help her elderly parents, advocate for better access to healthcare, and also encourage others to take better care of themselves. I would be remiss if I didn’t mention how much she loves cats.
Caz is a 30-something chronically ill blogger from the UK with a penchant for American crime thriller books, Dr Martens, chocolate and Hello kitty. She writes about life with chronic illness and pain, product reviews, tips, and general health information to raise awareness.
She writes on many topics but stays true to health, writing reviews about health products and other items that simplify life. Simple is far from the life that Caz leads, she’s a superwoman with what she accomplishes and you would be surprised by the number of disabling health issues she deals with each day. She’s snarky, has the greatest attitude, and has limits with the NHS healthcare system in England. But who doesn’t?
She’s a proud member of the following organizations:
You must stop by her blog to say hello, read through her archives, and get to know a remarkable woman. Caz is encouraging, raw, funny and always leaves me feeling better and loved.
The Normals regularly say these things to me, whenever I take disability leave to recover (kinda) from tick-borne disease.
Bless their little Normal hearts. They’re not trying to be hurtful. They’re trying to relate to something they can’t understand: invisible chronic illness, with its unpredictable flares and unquantifiable symptoms of pain, fatigue, and “Help, doctor, my cells are all pulling on each other like magnets.”
My favorite Normal faux-pax happened when I returned to work after two years of disability leave (and one additional year of a lawsuit against my insurer). Many coworkers knew I’d been sick. Some knew I’d had tick-borne disease. One of them welcomed me back and asked, “Did you enjoy your time off?” He meant well, but here’s what I heard him saying: Did you enjoy living it up with your free paychecks?
I feared my colleagues thought I’d spent those three years lounging on a chaise in a silken robe and full makeup, listening to celebrity gossip podcasts, sipping wine, and dropping bon-bons between my freshly-glossed lips, while stroking my sleek purebred cat like a Real Housewife of Northern Virginia.
Sure, I “enjoyed my time off.” I enjoyed the handful of semi-functional hours I had each day. I enjoyed squinting, while sweating and shivering, at incorrect health insurance EOBs and shady reports from insurance physician reviewers. Because of the broken U.S. health system, when I’m on disability leave I use almost more cognitive energy than when I’m at work.
The feared “activity tax”
Here’s what I’d like to tell people about what I “do all day:” I calculate my energy expenditures, then wait with bated breath to see if my calculations are correct. Will I be fine? Or will I pay the much-feared Activity Tax? If the latter, in what currency will the Tax be? Headache? Stiff joints? Motion sickness? Vibrating feet?
Because the stakes are so high, people with chronic illness become supercomputers: Estimated useable body-hours divided by approximate time to complete chores, plus parenthetical sub-formula ranking chores by importance, times the bounded function of activity tax per X number of stairs between the hamper and washer.
The poor Normals want to “just stay at home and rest.” Well, so do I. Instead, I’m racing my body against my bank account. I’m wrangling physical therapy and fistfuls of pharmaceuticals. The goal: Get my health to kick in, before my disability is randomly taken away because some doctor paid by an insurance company lies on my case report (I wish this were a hypothetical). Disability leave is so exhausting, I pine for the workaday drudgery of the office.
My best impression
In the meantime, though, I’m doing my best Real Housewife impression, lounging on that chaise. Except it’s not a chaise, it’s a cat-hair-covered futon, and I’m not lounging, I’m curled up in ache, and it’s not wine but electrolyte water, and it’s not a silken robe but pilly yoga pants, and it’s not bon-bons but fish oil capsules almost as big as bon-bons.
Per my calculations, the fish oil capsules are better than the liquid alternative. The splotch of spilled fish oil on my pants crotch cost about $35 dollars. (This does not include the Activity Tax I paid from walking up and down stairs, trying to figure out where the rotting mackerel smell was coming from.)
Back on the chaise-futon, in true frustrated-Housewife style, I hurl my wine glass. But it’s not a wine glass, it’s a thermometer. As is common in tick-borne disease, I feel flu-ish almost all the time, but there’s little to no corresponding fever. The cruel digital displays never validate my aches and burning face. To resolve this dissonance, I smash the devices. Still, my cool cheeks stay scorching. You’d think they’d at least give me a luminous glow, but no.
Beauty tips
Which brings us to beauty tips, as recommended by our Real Housewife on the cat-hair-strewn cushions. It’s not makeup, it’s purple under-eye moons. It’s not plastic surgery, it’s skin stretched smooth by inflammatory water-fat. It’s not lip gloss, it’s snot. Too tired to get a tissue? Just blow your nose on your cardigan sleeve!
Also clinging to the crusty cardigan: my cat. He’s not a sleek purebred, but an old, thin street rescue with allergies and a seizure disorder. He’s also a poor conversationalist, but that’s ok, because I have the celebrity gossip podcasts—except they aren’t celebrity gossip podcasts, they’re Zoom coffee klatsches with my fellow sickies. And we don’t gossip, we rage.
We rage about the doctor who was late calling in a pain meds script. We rage about the insurance company who denied someone disability, because the company’s spies caught the patient sweeping her porch (gasp!). We rage about the sick young woman erroneously diagnosed with Munchausen’s Syndrome by old male doctors at a northeast emergency room. In comparison, my coworkers’ thoughtless comments are small potatoes.
They still hurt, though. I should see my psychologist. Mental health care is an important reason to dig into my skimpy disability paychecks. And yet. . . it’s easier to pivot to add-to-cart therapy: a silken robe, lip gloss, and some bon-bons.
Christina D. Campbell is an award-winning author who writes about health, marital status discrimination, and special needs cats. She is currently seeking representation for her memoir about invisible illness. She can be reached at ChristinaDC.com.
Her words resonate with me and she’s right, it’s impossible to relate to an invisible disease unless you’ve been down that road.
The constant pressure to go-go-go caused me to ignore my body’s alarms and wreaked havoc on my ulcerative colitis. Then I found a better way.
Hustle culture — or the pressure to constantly be going, doing, and producing — is a big part of today’s work and school environments. Some see it as a hallmark of success.
Once you’re caught up in it, hustle culture can feel ever-present and all-consuming and yes, necessary. But is it really? Or is this emphasis on always striving to make more money, be more productive, etc. actually harmful, especially to those of us with chronic illnesses?
Life as a hustle culture queen
Before my diagnosis of ulcerative colitis (UC), I was a self-proclaimed hustle-culture queen. I lived for the go-go-go lifestyle and loved the constant approval it seemed to get me, especially as it related to academic success, and later, my work.
When I began getting sick in college and was in and out of medical appointments, I still continued on the path I had begun forging for myself in high school. I would wake up at 4:45 a.m., run mile after mile, spend an hour in the gym, go to classes all day long, work my on-campus jobs, and then spend the evening doing my homework as perfectly as possible, working on my blog, and running my sorority.
Because my vision was so clouded by my constant need for “success,” I didn’t hear the cries of my body as my first major flare started creeping up on me.
And after being diagnosed with UC? Well, nothing changed. I believed I could take my medication, call it good, and continue on as I was before — going, running, hustling.
Because my vision was so clouded by my constant need for “success,” I didn’t hear the cries of my body as my first major flare started creeping up on me. Then 3 weeks after graduating college, I found myself lying in a hospital bed, hooked up to IVs, staring out into the summer sun. It was this moment that made me realize hustle culture wasn’t all that it was made out to be. Sure, I had an almost 4.0 grade-point average, honors society tassels at graduation, and a marathon medal hanging in my bedroom, but what good was any of that if I didn’t have my health?
The moment I got out of that hospital I made it my mission to turn in my hustle-culture queen crown and become a hustle-culture dropout.
The measure of success
If you resonate with any pieces of my story, know that you’re not alone. Hustle culture is sneaky — from the messages we hear from bosses and coworkers about the importance of things like staying late at the office or having a side hustle, to the questions from family members about promotions and grades, to daily TikTok vlogs showing everyone’s 5–9s before their 9–5s — and it’s everywhere.
As tempting as it can be to try and fit into the mold that hustle culture has created, I truly believe it’s not worth it, or even safe, for folks with chronic illnesses. Not only does hustle culture negatively affect our bodies, but it can impact our minds as well by encouraging comparison, making us feel like we’re never enough, and creating mental burnout.
Hustle culture tells us to place traditional measures of success, such as income, grades, and job status, above all else, but when we have a chronic illness (or multiple illnesses), listening to our bodies must come first. And by subscribing to the hustle culture ways, we are continuously pushed into a cycle of ignoring our bodies, flaring, recovering, and then doing it all over again, just as I was in college. And we — and our bodies — deserve so much more.
So, how do we, in a world that tells us our worth comes from how much we do and produce, become a hustle-culture dropout? How do we learn to see our worth as completely separate from our productivity?
Redefine success
Instead of focusing on “success” as hustle culture sees it, what if you redefined success for yourself?
This was the first step I took in becoming a hustle-culture dropout, which does not have to be an all-or-nothing concept. Instead of seeing success as something that could be measured by society, I decided that for me, success was living a life that is balanced — a life that still allowed me to feel financially comfortable so I could afford my medical needs, but that also included daily rest and self-care. I realized that I never actually felt that successful when I was doing “all the right things,” because I was so burnt out and disconnected from myself.
Try thinking about what real success might look like for you.
Foster self-love
A big reason why I fell so easily into hustle culture and based so much of my worth on how much I did and produced was because I lacked self-love. Because of this, I was constantly searching for validation outside myself.
When we center ourselves in self-love, it’s much easier to remember that we don’t have to participate in hustle culture, and to rest without guilt, because we’re able to give ourselves the validation we need from an intrinsic place. Self-love can feel hard to foster when we are being constantly pushed to be and do more, but forcing yourself to slow down and get to know yourself on a deeper level is a beautiful place to start.
Getting to know all the layers of who you are — your passions, your values, your unique characteristics, your quirks, what makes you laugh, what makes you tick, etc. — is a foundational piece of starting to love yourself better. Think of a romantic relationship, for example — it would be really difficult for you to feel loved if your partner never took the time or put in the effort to learn new things about you. It’s the same thing with yourself!
Cultivate more joy
Doing things simply for joy is something that we too easily forget how to do as adults, especially in the midst of navigating chronic illness. I have found that dedicating time each week to activities that serve no “purpose” other than making me happy has helped remind me that productivity isn’t the only thing in life that matters, and that there are other things I want to prioritize above simply go-go-going.
This may look like taking a dance class (if you’re physically able), coloring, reading a fun novel, or watching a new television show. Anything works as long as joy is at the center of it!
Release destination addiction
Hustle culture wants us to always be striving, because if we’re always wanting to be more, make more money, get more praise, etc., we’re going to keep forcing ourselves to do more.
Hustle culture thrives on a concept called destination addiction. Destination addiction can sound like, “I’ll be happy when I make X amount of money” or “I’ll be satisfied when I have achieved X promotion.”
Hustle culture pulls us out of the present and puts an unhealthy emphasis on the future, despite the fact that who and what you’re doing right now is always enough. Finding ways that help you stay present with chronic illness, such as writing a daily gratitude list or meditating, can help you drop out of hustle culture once and for all, because you start to find peace in the present and no longer feel a constant need to look toward the future.
The takeaway
Although it can feel impossible to become a hustle-culture dropout, it’s possible and necessary if you have chronic illness. Dropping out of hustle culture won’t only protect your physical health, but your mental health as well. Making small changes by allowing yourself to slow down and not push harder than you need to can make a big difference.
Medically reviewed on February 21, 2023
This a great article that applies to anyone with a chronic illness, we have to listen to our bodies and not other’s expectations.
The ‘Polly Murray Papers’ reveal the horrific symptoms of ground-zero Lyme disease sufferers.
By Kris Newby
Sadness washed over me as I walked through the house in Lyme, Connecticut, where Mary Luckett “Polly” Murray used to live. Built in 1853, it was located in a rural area surrounded by forests, rolling hills, and cranberry bogs. The house needed a fresh coat of paint, and the yard had gone to seed.
The new owner had recently divorced and hadn’t replaced the furniture his ex-wife had taken. There were mattresses on the floor and unfinished projects spilling out of the garage. The owner and his dog seemed unwell. Taking in the scene, I thought, this looks like the flotsam and jetsam of another family destroyed by Lyme disease.
The previous owner, Polly Murray, was an artist, a mother of four sick children, and the disease’s first unofficial epidemiologist. She died in 2019 of Alzheimer’s disease. In the 1960s, she began documenting the bizarre constellation of symptoms that afflicted her family and neighbors living along the Connecticut River. In April, I visited the Medical Historical Library at Yale University to review her original Lyme patient case histories, turning back the pages of time in search of the origins of this mysterious outbreak.
So many questions
These first-hand accounts raised a lot of questions for me. Why did it take 11 years, from 1964 to 1975, for the medical system to take notice and take action?
In 1975, the investigation was assigned to Allen Steere, MD, a young Yale rheumatology fellow who had just returned from a CDC Epidemic Intelligence Service (EIS) assignment in Liberia. Why did Steere narrow the symptomology so soon in the investigation and downplay most of the neurological symptoms? Why did it take six more years to identify the underlying tick-borne bacterium, Borrelia burgdorferi? Did CDC-EIS, the U.S. organization that investigates suspicious disease outbreaks, find it strange that three tick-borne diseases suddenly appeared a few miles from the Plum Island biological weapons lab?
As I looked through the boxes of her notes, I was struck by the unusual nature of the symptoms and the point-source geographic origin. What happened there, and what can we learn from Polly’s eyewitness account?
A map from an early survey of Lyme disease in Connecticut, from the U.S. Centers for Disease Control. [1]
Polly’s case histories
Polly’s family had been sick for decades, and the many doctors they visited couldn’t figure out what was wrong—they’d never seen this combination of crazy symptoms before. In a letter to a journalist, she explained why she became the medical scribe for her community:
“Early in the history of our problems, I realized that my only salvation would be in keeping accurate records of what was going on, as unbelievable as it was. I intuitively felt it very important for anyone with baffling chronic symptoms to put the information down on paper.” [2]
Polly Murray, 1954, on graduation day at Mt. Holyoke College, before her strange symptoms began. [3]
Polly filled boxes with notes on her neighbors’ unusual histories, which included relapsing pain, brain fog, mental breakdowns, kids on crutches, children with developmental problems, seizures, lost jobs, broken marriages (including her own), and children too sick to go to school. As a Lyme-area insider, neighbors told her their heartbreaking stories, from personality changes to suicides. Each family’s tragic history read like crib notes for a Stephen King horror novel.
Huge toll of neurological and psychological symptoms
In one list of 35 cases from the 1990s, I was struck by the large number of patients who reported serious neurological and psychological problems. [2] Here’s a sampling:
Patient No. 1. Diagnosed Lyme disease. Foot problem, arrhythmia, leg weakness. Neurologist. Lyme encephalitis? Psychiatric problems. Paranoia. Hospitalization. Attempted suicide. Nursing home with weekends home.
Patient No. 2. Diagnosed Lyme disease. Mental problems. Seen in Boston. Psych tests, Lupus IV treatment. Alzheimer’s? Stroke? Lyme? Nursing home. Died 7/1991. No autopsy.
Patient No. 3. Lyme disease history. Found outside in a nightgown one winter night, disoriented. Nursing home. Positive Lyme titer.
In another document, she noted that 22 of her neighbors had heart issues, 26 had neurological symptoms, seven or more suffered from psychosis or depression, and seven had suicidal ideations. [2]
Yet none of these potentially life-threatening symptoms were mentioned in Steere’s “I solved the Lyme mystery” announcements, first at a 1976 conference [4], then in the 1977 article “Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities.” [5] (To be fair, subsequent publications documented some of the neurological symptoms.)
The wrong path
In a move that would send researchers down a dead end for years to come, Steere declared that Lyme disease was primarily a problem of swollen joints, not a disease that affected the nervous system, the brain, the heart, and other organs.
Steere’s letter to Polly Murray on the nature of Lyme disease.
Other medical experts criticized his premature labeling of this disease as a “relatively minor type of arthritis,” including:
—Franz J. lngelfinger, MD, the editor of The New England Journal of Medicine, who rejected Steere’s discovery article, wrote, “Although reviewers and editors were impressed by the interest your studies have generated, you were unable to identify an etiologic agent and apparently actually saw yourself only 20 symptomatic patients.” [6]
—William E. Mast, MC and William, M. Burrows, MC, the Groton military physicians who published the first Connecticut Lyme case studies, wrote in a JAMA rebuttal letter: “On exchange of patients and information with Dr. Steere and the group at Yale investigating “Lyme arthritis,” it is the consensus that we are all dealing with the same process. It is apparent that the term “Lyme arthritis” is much too restrictive since there have been cases from the Connecticut and Rhode Island shores and the incidence is expected to be more widespread.” [7]
—Raymond Dattwyler, MD, Professor of Pathology, Microbiology and Immunology, Medicine, and Pediatrics at New York Medical College said, “It’s unfortunate that in the U.S., the rheumatologists studied Lyme disease first. Lyme disease is a multisystemic infectious disease that impacts many organs. But because the early work was done by rheumatologists, the prism through which we view the disease was artificially narrow, and impeded research for years.” [8]
Words from the grave
Polly wasn’t a trained epidemiologist, but she approached the problem like a true scientist—she wrote everything down so nothing would be missed. And as the people around her got sicker, she doubled down on her resolve to get help for these very sick people:
I firmly believe in the politics of numbers. One person, or even six in a family such as ours, does not have the power that was acquired by the ever-increasing number of people eventually involved. Proper diagnosis was further hampered by the fact that the patients from our area did not go to just one medical center, where, if we had, the high incidence of these strange symptoms might possibly have been picked up earlier. Instead, because of our geographic location, we, in fact, went to specialists in New Haven, Middletown, Hartford, and even New York and Boston. Perhaps it was the adversity that I encountered in the early pursuit for knowledge concerning our constant maladies that made me persist more than I would have otherwise.
Despite her efforts, it’s still difficult for patients to get diagnosed and treated, especially in the later stages of the disease. According to MyLymeData’s registry of 12,000-plus Lyme patients, about half had to see 5 or more clinicians over 3 or more years before receiving an accurate diagnosis. [9]
Little progress in 43 years
Forty-three years after its discovery, we still don’t have a reliable Lyme screening test, and about a quarter of patients treated with the standard dose of antibiotics go on to suffer from ongoing symptoms. [10] The CDC estimates that there are almost 500,000 new cases a year and growing. [11] And an analysis of NIH Lyme-related research grants from 2013-2021 revealed that less than 1% was spent on looking for better treatment protocols. [12]
Regrettably, Polly’s perspective on what went wrong in the 1970s still holds true today. The medical system still hasn’t figure out how to deal with complex chronic diseases like long COVID, Lyme disease, or ME/CFS (chronic fatigue).
It is only in looking back on the discovery of this disease that I see that it fit into the classic pattern of denial and resistance to the unknown until it reached a point where it could no longer be ignored. Most doctors are overloaded in just trying to alleviate known problems, thereby making it difficult for anyone with a new set of symptoms to compete for the clinician’s time. It is easier to decide that the patient is hypochondriacal than to deal with the unknown. Furthermore, in this age of specialization, the total picture of the patient’s health is often lost when the patient goes from specialist to specialist to be treated for individual symptoms.
This history shows that the definition of Lyme disease went off track early on and then diverged further from reality under the influence of vaccine developers and medical insurers who found it more profitable to deny the chronic, relapsing manifestations of the disease. The legacy of Lyme disease, which continues to spread unabated, will continue to haunt us unless we address this problem in a more honest and effective way.
Good Housekeeping, March 1977. [13]
Kris Newby is an award-winning medical science writer and the senior producer of the Lyme disease documentary UNDER OUR SKIN. Her book BITTEN: The Secret History of Lyme Disease and Biological Weaponswon three international book awards for journalism and narrative nonfiction. Previously, Newby worked for Stanford Medical School, Apple, and other Silicon Valley companies.
This article is republished by permission from The BITTEN FILES on Substack, July 12, 2024. Learn more here.
References
1. Petersen LR, et al. “Epidemiological and clinical features of 1,149 persons with Lyme disease identified by laboratory-based surveillance in Connecticut.” Yale J Biol Med. 1989 May-Jun;62(3):253-62.
2. Polly Luckett Murray Papers, Medical Historical Library, Harvey Cushing/John Hay Whitney Medical Library, Yale University.
5. Steere AC, et al. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities. Arthritis Rheum. 1977 Jan-Feb;20(1):7-17.
Hypogammaglobulinemia is an Immune Disorder where my body doesn’t make enough antibodies which can be dangerous. Luckily, I don’t leave the house often and wear a mask when I do. I was diagnosed two years ago but insurance didn’t approve until I reached a record low. I’ve been approved for 12 treatments but I’m not confident that 12 treatments is all I need. Currently, my Imoglobins are at 600 and my doctor would like to see them at 800-900. Hopefully, this week’s treatment will increase my number and I’ll know more once the lab work is back.
The treatments take 4-5 hours and during that time you get to relax in an oversized recliner. For this treatment I packed much lighter, instead of a duffle bag and my handbag, I bought a North Face backpack, and everything fit inside. I took my new book Native American Myths by Matt Clayton, my ancestors were Cherokee and I wanted to learn more about their beliefs. When I wasn’t reading, I indulged in my favorite pastime by listening to music.
Here is what I listen to
Adele 21
Adele 25
John Mayer Born and Raised
One Republic Dreaming Out Loud
REO Speedwagon You Can’t Tune A Fish
Pharrell Williams Happy
Paul Carrack Tempted
Fleetwood Mac Crystal
It was so nice to relax with my feet up with my eyes closed and listen to some great tunes.
The treatments had a few hiccups. The first needle didn’t go in right so she had to use the vein next to it which was successful. It was a very slow morning but my nurse let my first bottle of medication run dry so they had to prime the line and she let it dry again with my saline. A small price to pay to get better.
The first two days after treatment you feel sluggish and can have a headache.
This time my treatment took five hours and by the time I got home I was starving and had not taken my morning medication.
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 Vagus Nerve Stimulator 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.
These are 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.
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.
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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.
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.
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.
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.
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.
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.)
(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.
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.
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.
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.
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.
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:
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.
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.
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.
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.
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.
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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.
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
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.
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.
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.
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.
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.
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 Types
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.
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.
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.
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.
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.
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!
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.
*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.
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.
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 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.
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.
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.
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.
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.
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.
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 Americanscurrently 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.
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.
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 breathingis 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.:
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
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