Chronic Illness

Knowledge Is Power but Experience Tells the Real Story

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  National Pain Report Posted on August 26, 2019 by Denise Hedley There is something about being chronically ill that makes us need to know everything there is to know about what is wrong with our bodies. This, of course, gets us in trouble on occasion when the doctors take our knowledge of medical terminology and turn it around as proof that we are faking it. I guess they didn’t get the memo. Chronic pain does not mean chronic stupidity. We actually care. We are actively participating in our own care teams. We have gained a frightening amount of medical knowledge over the years just trying to understand our conditions. We know our bodies better than most. We deal with more in a short period of time, say during a flare, than many people deal within their lifetime. That is in addition to what we deal with when we’re not in a flare. For us, the pain never really goes away. Our experience adds to the knowledge we have accumulated. It enables us to cope with what is going on. It enables us to forge ahead through the abyss of opioid lies and laws that do little more than minimize our very existence. Denise Hedley I think we need to stand up and loudly use that knowledge because it is backed by our experience. Those who have been responsible for the faux crisis have limited knowledge. They only know the scientific […]

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Chronic Illness

Let’s Talk About Pain

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Dear pain warriors, At U.S. Pain Foundation, we deeply believe in the power of sharing patient stories. Talking about our experiences with pain helps us to educate others, to create change, and to offer hope. That’s why our theme for Pain Awareness Month 2019, which begins Sunday, is #LetsTalkAboutPain.I first got involved in patient advocacy by writing a book about my experiences with complex regional pain syndrome. It enabled me to process my personal journey, take control of my story, and help create awareness for those like me. I hope speaking up about pain this September can do the same for you. This year, we have dozens of opportunities for you to help bring pain to the forefront of public conversations, ranging from our daily storyathon to social media giveaways to weekly events.All of these activities are presented in collaboration with our generous sponsor, Thrive Tape, the creator of an innovative, far-infrared kinesiology tape for all types of musculoskeletal conditions and injuries. (We encourage you to check them out! Use the code USPAIN for a discount.)How you can participateWe have something for everyone! Most activities are online, which means you can take part from the comfort of your home. Storyathon. Each day in September, U.S. Pain will be sharing a video story of a real person living with pain. These individuals–from all walks of life–bravely submitted their personal stories in August to help create awareness. To watch the videos, follow us on Facebook and Twitter. Missed the video storyathon deadline? Share […]

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Chronic Illness

Chronic Pain Thoughts

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  The sheet touches the underside of my arm and it burns. My sandals touch a spot on my foot that shoots pain up my leg. Sleeping is restless since shoulder and hip joints have painful arthritis. Motivation for anything is non existent. Sleeping requires narcotics, I hate the way they make me feel the next day. Walking the day […]

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Chronic Pain

DON’T BE SILENT: SPEAK UP ABOUT PAIN THIS SEPTEMBER

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July 23, 2019/ U.S. Pain Foundation Too often, due to broad misconceptions and a lack of understanding about pain, pain warriors are afraid or ashamed to speak up about their stories. But the only way we can create change is if we start talking–to loved ones, coworkers, neighbors, clinicians, and even policymakers. That’s why our theme for Pain Awareness Month 2019, which begins September 1, is “Let’s Talk about Pain.” We’ll be hosting numerous events, campaigns, and activities that center around this idea. In order to truly get the word out, though, we need your help. HOW YOU CAN PARTICIPATE Below, please find a short list of ways you can participate right now in Pain Awareness Month. Many of these campaigns require involvement before September, so don’t wait! Submit your video story! Share a 3-5 minute video about your pain journey with us by August 9. All participants will receive a limited-edition Pain Awareness Month bracelet and our new Living with Pain educational booklet–AND be entered to win a prize pack. A handful of individuals will be selected to have their videos featured online throughout September! Get started here. Questions? Email us. Request a proclamation. Ceremonial proclamations from state and local representatives help bring awareness to pain at the government level. To get started, fill out this form by August 9. We have easy-to-use templates and tips to make the process easy and fun. Please note that proclamations can take time, so put in your request now! For questions, email us. […]

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Chronic Illness

Why Do Women Get More Migraines than Men?

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National Migraine Institute Posted on August 27, 2018 by Staff Researchers have found a potential mechanism for migraine that may explain why women get more migraines than men. The study, in Frontiers in Molecular Biosciences, suggests that sex hormones affect cells around the trigeminal nerve and connected blood vessels in the head.  They found that estrogens, which are at their highest levels in women of reproductive age, are particularly important for sensitizing these cells to migraine triggers. “We can observe significant differences in our experimental migraine model between males and females and are trying to understand the molecular correlates responsible for these differences,” explains Professor Antonio Ferrer-Montiel from the Universitas Miguel Hernández, Spain. “Although this is a complex process, we believe that modulation of the trigeminovascular system by sex hormones plays an important role that has not been properly addressed.” Ferrer-Montiel and his team reviewed decades of literature on sex hormones, migraine sensitivity and cells’ responses to migraine triggers to identify the role of specific hormones. Some (like testosterone) seem to protect against migraines, while others (like prolactin) appear to make migraines worse. They do this by making the cells’ ion channels, which control the cells’ reactions to outside stimuli, more or less vulnerable to migraine triggers. Some hormones need much more research to determine their role. Estrogen, however, stands out as a key candidate for understanding migraine occurrence. It was first identified as a factor by the greater prevalence of migraine in menstruating […]

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Chronic Pain

Pain Warriors

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As Ambassador for U.S. Pain Foundation I want to share the latest news on a meeting offered by U.S. Pain Foundation and Coilition for Headache and Migranes Patients. Melinda Sandor Ambassador-Texas U.S. Pain Foundation. Dear pain warriors, Those with chronic pain, including migraine and headache disorders, can have an especially tough time finding a doctor they click with. Have you ever wanted to find a way to better communicate with your doctor, get the most out of your visits, and maximize your treatment plan?If yes, please join us this Thursday, June 13, at 7 pm ESTfor an intimate conversation between neurologist and headache specialist Abby Chua, DO, and patient advocate Katie Golden. Dr. Chua and Katie will discuss what patients and doctors can learn from one another, and offer tips for interacting.Dr. Chua is a headache specialist at Hartford HealthCare Headache Center in Connecticut. She also is program director of their Headache and Facial Pain Fellowship Program, one of the few such programs in the country. Dr. Chua brings a special level of compassion to her practice as a person living with vestibular migraine, and advocates tirelessly on behalf of patients. Katie lives with chronic migraine disease, and has emerged as a leading voice for the patient community. She is the Migraine Advocacy Liaison for U.S. Pain Foundation and a member of the steering committee for CHAMP. She was the recipient of the Impact Award 2017 for the Association of Migraine Disorders and writes […]

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Chronic Pain

INVISIBLE PROJECT: MIGRAINE THIRD EDITION NOW AVAILABLE

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As an Ambassador for the U.S. Pain Foundation I invite you to read the latest issue of Invisible Project. Melinda Sandor Ambassador-Texas U.S. Pain Foundation June 3, 2019/ U.S. Pain Foundation/ 0 Comments In time for Migraine & Headache Awareness Month, U.S. Pain Foundation has released its third edition of the INvisible Project focusing on headache and migraine diseases. The publication depicts the reality of life with pain, and why people living with headaches diseases need and deserve more help, treatment options, and research. It also serves as an inspiration to those living with the disease, offering hope and resources. The magazine features profiles of 10 inspiring individuals, including: Danielle Byron Henry: On March 24, 1999, at age 17, Danielle took her own life due to migraine disease; a life lost to unbearable pain from a serious neurological condition. In 2019, her family observed the 20th anniversary of her passing. The family honors Danielle’s life and legacy through the Danielle Byron Henry Migraine Foundation, which was formed in 2016. The foundation provides support and care for all those with migraine disease. Tom Sayen: Since the age of 17, Tom has lived with blinding headache pain. It took 48 years, and endless nights of unbearable pain, for him to find the correct diagnosis of cluster headaches.  He has become an advocate, ensuring that all individuals living with cluster headache are provided with the necessary education and treatment. Melissa Carlson Kelly: Melissa serves as […]

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Chronic Illness

Anesthesia for Chronic Pain?

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  Ketamine is an anesthesia used since the 1960s and has since been proven to work for Chronic Pain and Mental Illness. My pain levels have been through the roof and walking the last 15 days has been difficult. I made the decision to try something radically different. I had my first Ketamine treatment was yesterday. I  read about the LSD […]

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Chronic Illness

Fibromyalgia Thoughts #2

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The pain has moved to my lower body, it attacks every joint and muscle I have. For the past 10 days, my leg has caused a big problem, it’s hard to walk. Any pressure on my leg makes me scream out in pain. I can’t stand up by myself unless there are objects strong enough to pull me up. My husband isn’t a little guy and it takes two or three tries because I start to cry out. I have no idea what is happening, this level of pain is new for me. It’s not so much the level but the time in constant pain. I’ve been going to bed between 4:30-6:30 p.m. every night thinking resting is the only answer. So far that seems to be the case. I can now move my knee closer to a normal sitting position. Try getting on and off the toilet, it’s been a painful 10 days. I’ve forced myself to bed in order to get better. I’m not looking for total pain relief, that’s not my goal. Right now I want to be able to get out of a chair by myself. The rest of my body feels the normal everyday dull pain, my shoulder still screams out at night. Pain meds, topical patches and ointments the doctor gave me on Friday have provided no relief. I’m laying in bed with one leg balancing the computer, trying not to walk any more than […]

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Chronic Illness

PAIN COMMUNITY UNITES TO RESPOND TO FEDERAL DRAFT REPORT

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May 1, 2019/ U.S. Pain Foundation The 90-day public comment period for the Pain Management Best Practices Inter-Agency Task Force’s (PMTF) draft report came to a close April 1, with more than 6,000 individuals and organizations submitting feedback. Among those to comment was the Consumer Pain Advocacy Task Force (CPATF), a coalition of pain patient-related nonprofits, including U.S. Pain Foundation, which submitted a 25-page joint letter. In addition to U.S. Pain Foundation, the CPATF letter was signed by the Center for Practical Bioethics; CHAMP (Coalition For Headache And Migraine Patients); Chronic Pain Research Alliance; For Grace: Women In Pain; Global Healthy Living Foundation; Headache and Migraine Policy Forum; International Pain Foundation; Interstitial Cystitis Association; RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and The Pain Community. “We are very grateful that so many patient organizations joined together to respond to this report with one, unified voice,” says Cindy Steinberg, U.S. Pain Foundation’s National Director of Policy and Advocacy and the only patient advocacy representative on the PMTF. “While the draft report holds a lot of promise, from the patient perspective, we had a number of important suggestions for ways to improve or expand on its recommendations.” Of note, the CPATF letter commends the draft report’s emphasis on individualized care and encouraged further emphasis of that point. CPATF also urges PMTF to go further and recommend that the Centers for Disease Control and Prevention (CDC) formally revise and reissue their 2016 guidelines on opioid prescribing […]

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Chronic Illness

CLEARING UP 12 COMMON MYTHS ABOUT MEDICAL CANNABIS FOR PAIN

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April 18, 2019/ U.S. Pain Foundation   Ellen Lenox Smith is Co-Director of Medical Cannabis for U.S. Pain and a U.S. Pain Board Member. She lives with two rare conditions: Ehlers-Danlos Syndrome and sarcoidosis. After years of struggling to find pain relief without side effects or adverse reactions, she discovered medical cannabis. A retired school teacher, Ellen is now a renowned patient advocate and works tirelessly to encourage safe, fair access to all treatment options, particularly medical cannabis. She has spoken at numerous conferences on cannabis access and been featured widely in the media on the topic. She is also the author of two books: It Hurts Like Hell!: I Live With Pain—And Have A Good Life Anyway and My Life as a Service Dog. Below, she clears up common myths surrounding medical cannabis for pain. MYTH #1: ALL  PEOPLE WHO USE CANNABIS MUST BE “STONED” OR “HIGH.” Truth: this only happens if you use too much medication. People living with pain get pain relief; people using it socially and not in pain, get high! In addition, medical cannabis is made of two components: THC, which causes the mental effects associated with feeling high, and CBD, which produces bodily effects. Various strains of cannabis have different ratios of THC and CBD, which means that not all strains create as much of a “high” feeling. MYTH #2: EVERYONE WHO USES THE SAME STRAIN EXPERIENCES THE SAME RESULT TO USING IT. Truth: Each body can have […]

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Chronic Illness

PAIN CONNECTION ADDS FOUR SUPPORT GROUPS AND NEW MONTHLY CALL

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May 1, 2019/ U.S. Pain Foundation   Finding community support is essential to living with chronic pain. With that in mind, Pain Connection, a program of U.S. Pain Foundation, continues to expand its in-person and conference call support group offerings nationwide. Along with three existing monthly “Pain Connection Live” support group calls, there will now be a morning call on the third Thursday of each month from 10-11 am EST. The first call will be May 16. Existing calls are held on one evening, one afternoon, and one Saturday each month. To learn more or register for a Pain Connection Live call, click here. In addition, four new in-person support groups have been added in CA, AL, and NJ. All support groups are led by a person with pain who has received intensive training from Gwenn Herman, LCSW, DCSW, Clinical Director of Pain Connection. Costa Mesa, CA  Date: Second Tuesday of each month. The next meeting is May 14. Time: 11 am – 1 pm Location: Panera Bread at 3030 Harbor Boulevard, Costa Mesa, CA. (Meet against the back wall.) Contact: Kristie McCurdy, MSN, RN, at CRPSsurvivorsOC@gmail.com San Francisco, CA Date: Second and fourth Friday of each month. The next meetings are May 10 and May 24. Time: 12 – 1 pm Location: 1701 Divisedero Street, 5th floor conference room, San Francisco, CA. (Elevator available.) Contact: Cessa Marshal at cessamarshall@yahoo.com or 415-637-1812. Pell City, ALDate: The first meeting will be May 2. Time: 6-7:30 pm. Location: The Brook Besor Coffee Shop, 4204 Martin St. S., Cropwell, AL […]

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