Category Archives: Fibromyalgia

Chronically Ill Patients will no longer Apologize because they are sick.

I’ve Decided I’m No Longer Apologizing for What I Can’t Do Because of My Illnesses
07/08/16

I am disabled. It wasn’t until this year that I started to accept that, and realize that my illness (or rather illnesses) is here to stay. This year I was diagnosed with a systemic autoimmune disease known as Sjogren’s syndrome.

I won’t lie, this illness is a cruel one. I honestly don’t know how I’m going to feel from one day to the next. I had a hunch a few years ago that I probably had an autoimmune disease since my entire body seemed to be under attack. I’ve been diagnosed with illnesses like interstitial cystitis and fibromyalgia, but I didn’t want to believe that I couldn’t cure them. I tried every remedy I could, but over time my health was only getting worse. I was angry that no matter how much willpower I had or how much money I spent, I couldn’t get well. I was angry at other people for being able to take their health for granted. Most of all, I was angry at myself for the guilt I felt and the need to apologize over and over again for being sick.

I recently decided that I will no longer be apologizing for not being able to do what I was once able to. Saying the words “I’m sorry” implies that I have control over my debilitating symptoms. I think we carry this guilt with chronic illness because we feel we’ve somehow brought it on ourselves. I can no longer apologize or feel guilty for not being able to make plans, or for being unable to work, or even brush my hair sometimes. It’s not my fault. I spent so much time trying to convey what it’s like to be ill to others, and I avoided the fact that I wasn’t willing to accept my limitations. I refused to believe it wasn’t going to get better.

Now, for my sanity, I have to mourn my former life and simply let it go. I’m releasing that energy into the universe so it no longer weighs me down. I know firsthand that chronic illness can break your heart over and over again, and there’ll be days when you feel as though the loneliness will shatter you into a million pieces, but I would like to remind you that it’s not your fault. I know that you’re simply doing the best you can.

I didn’t want to accept how sick I was because it felt like giving up, when in reality learning to accept my limitations and let go of the guilt has been the best thing for me. It’s allowing me to start over.

I’d like to believe that I’ve been given this illness for a reason. Whether it’s to educate people about this disease, or to learn a lesson about myself, or hell maybe it’s just that I’m tough enough to take the beating. Whatever the reason, I’m learning to embrace it. Who knows, maybe I’m turning into a superhero. I mean, my body does do things that a “normal” body doesn’t,
That’s it Im a superhero.
Written by Amber Hosea from the Mighty Chronincally Ill.

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A year of Treatments Trials for Fibromyalgia.

+100%-A recent analysis of the chronic fatigue syndrome treatment citations produced over the past three years indicated that behavioral studies, in particular, cognitive behavioral therapy (CBT) studies, dominated the ME/CFS treatment field.  Behavioral studies tended to be large, well-replicated and most emanated from two countries – the UK and the Netherlands.  Non-behavioral ME/CFS studies, on the hand, tended to be smaller, were rarely replicated, and many emanated from countries with smaller research establishments.

treatment trials fibromyalgia

Fibromyalgia is similar to ME/CFS in that it receives poor funding, is controversial in some circles and often overlaps with ME/CFS. Fibromyalgia is different in that it has a home in specialty (rheumatology); its main symptom – pain – is a hot item right now, the FDA has approved three drugs for it and drug companies are interested.

In an attempt to understand what types of treatments researchers are focusing on right now in FM, I surveyed all FM treatment citations ( e.g. studies, reviews) found in PubMed over the past year.  As with the chronic fatigue syndrome survey, I categorized them according to whether they referred to behavioral/non-behavioral studies and noted the country of origin.

A three-year survey of PubMed yielded 78 treatment citations for ME/CFS. A one year FM survey on PubMed yielded 68 citations.

Non-Behavioral Studies Dominate

In contrast to chronic fatigue syndrome biological studies dominated FM treatment publications

Only one-third of FM citations over the past year referred behavioral citations while two-thirds referred to non-behavioral, e.g. biological studies.  This finding contrasted strongly with that found in the ME/CFS survey which indicated that 70% of treatment citations referred to behavioral treatments.

Behavioral Studies

Exercise studies dominated the behavioral approach to FM with two-thirds of the behavioral citations last year referring to them.  Few CBT studies were done.  In contrast to the two countries (UK, Netherlands) that dominated the behavioral treatment portfolio in ME/CFS, no countries dominated the behavioral treatment portfolio.

Non-behavioral Studies

Balanced Portofolio

FM’s non-behavioral treatment portfolio showed balance with drug citations easily the most prevalent but with other treatment aspects showing balance – showing that interest in FM comes from all quarters.

  • Drugs – 22
  • Brain and other Stimulation – 7
  • Musculoskeletal Manipulation – 7
  • Supplements and Nutrition – 7
  • Others – 3

Drug Interest High But Innovation Lacking

fibromyalgia_drugs

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The 22 citations referring to drugs suggested significant interest in drugs for FM is present. However, no new drugs were assessed; all the citations referred to already approved or otherwise well-known drugs. The continuing emphasis on FDA approved drugs suggests that getting FDA approval is a sure way to continued research.

With fibromyalgia’s home Institute, NIAMS, focusing almost exclusively on behavioral aspects FM’s next breakthrough in drug development is probably not going to come out research done at the NIH. Given the NIH’s prominence in research that’s a real concern.

Stimulating Therapies Provide Hope

With seven studies done on two types of brain stimulation and two other stimulation types, nervous system stimulation technologies  are clearly getting interest.  How this aspect of treatment will shake isn’t clear but the field is developing rapidly, and improvements in the technology should continue.

These technologies are mostly non-invasive but one group found that implanting electrodes in the cervical vertebrae of treatment-resistant FM patients was well tolerated and significantly improved quality of life.  Another intriguing possibility involves external or subcutaneous stimulation of the trigeminal nerve in the head. Besides FM trigeminal nerve stimulation is being tested in epilepsy and depression.

Vagus nerve stimulation has been assessed in FM (but not this year). Whether the very promising results from the one small study will be followed up on is unclear.  It and the other stimulatory techniques showing up suggest, however, that a rich field is emerging.

A Range of Musculoskeletal Trials

Musculoskeletal treatment trials incorporated a number of different methods. Neurodynamic mobilization and extracorporeal shockwave treatment, for instance,  use two different approaches to the musculoskeletal pain found in FM. Neurodynamic mobilization is a bodywork approach that seeks to relieve constrictions in the muscles.

Extracorporeal shockwave treatments use shockwaves to induce tissue repair and regeneration. It has been FDA approved for use in treatment-resistant plantar fasciitis.

Alternative Therapies and Nutrition

alternative therapies fibromyalgia

Adding a food product palmitoylethanolamide (PEA) to duloxetine significantly reduced pain levels over duloxetine alone in FM patients. This is the first PEA trial in FM but other studies suggest that PEA may be helpful with chronic pain. Be warned that it may take some time though.  A recent Italian pelvic pain study found PEA’s results didn’t show up at three months but did at six. PEA is getting quite a bit of research – most of which is coming out of Italy.

Hyperbaric oxygen therapy is another unorthodox but possibly helpful treatment that showed up in treatment studies last year.  It too is being tested in a variety of disorders.

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Acetyl-l-carnitine was about as effective as duloxetine in reducing pain. Testosterone – a substance used by many alternative practitioners – showed up in two citations last year.

________________________

One can’t characterize the FM treatment field as booming (no new drug possibilities showed up in the literature last year) –  but it is fairly diverse and, in contrast to ME/CFS, shows balance.

The four FM drugs expected approved over the next couple of years are reformulations of past drugs. While each may improve increased relief none is expected to break new ground – a need in FM. (Two are reformulations of Lyrica, one is a sublingual form of Flexeril, and one is a new SNRI.) Pridgen’s antiviral regimen is an entirely new approach. The Phase II study didn’t make it into the study literature this year but will next year and a trial is expected in 2017.

The lack of research funding for FM at the NIH is a concern. Although the NIH devotes more dollars to FM than ME/CFS, ME/CFS researchers are engaged in more innovative studies.

Given the new emphasis on pain research in general, though, there is reason to hope that new types of treatments are on the way.

_________________________________

 Survey

Country Breakdown

Behavioral = 23

Exercise – 16

CBT /GET – 3

  • Music listening
  • Symptom Control
  • Forgiveness
  • Mind/Body
  • Mindfulness Training

Behavioral = 23

  • Spain – 7
  • US – 6
  • Turkey – 4
  • Italy – 2
  • Brazil – 2
  • France – 1
  • Sweden – 1

Non-behavioral = 43

  • USA – 12
  • Spain – 5
  • Italy – 3
  • France – 3
  • Belgium, Turkey – 2
  • Denmark, Canada, Norway, Germany, Japan, Lebannon

Non-behavioral Categories

Drugs = 22

  • Milnacipran – 7
  • Duloxetine – 4
  • Pain Drug Effectiveness – 2
  • Lyrica – 2
  • Amitriptyline – 2
  • Neurontin, Tramadol – 1
  • Amytriptyline, Duloxetine, Gabapentin, Pregbalin – Health care utilization, SSRI – review, Pharmacotherapy Review

Brain and other Stimulation = 7

Muscoskeletal = 7

Supplements and Nutrition – 7

Alternative Therapies – 4

 

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Autoimmune disease, vestibular Dysfunction, Fibromyalgsia took my health and my career

I have always worked in my life, Proud of being being able to raise my kids and live our life the way we did, we hadn’t gone to Disney land, or drove a fancy car, but we had a home, home made food, nothing out of a box, the boys were in Soccer, Karate, Swimming, cub scouts, and boy scouts, Our house was the neighborhood house, I loved having all the kids at our house, although our house wasn’t 3000 square feet it was home and nice home, and although we couldn’t really vacation , we camped in the back yard and used a tent trailer in the front yard and made up vacations in our imagination, food and house decorations to match the vacation, I worked in the hair business for a while before realizing it wasn’t coming from my heart, so I started working in the medical field, first in the operating room then Labor and delivery then 15 years at a Dr’s office and I loved my job, it didn’t feel like work to me, I was doing what I was meant to do.  I believed in everything The Dr I worked for did, I really believed his first interest was the patients. My loyalty will always be there.   But my illness took that away from me, how devastating that was to me to give up what I believe was meant to do.  But with employers it comes down to, you become a liability, there afraid you are going to make mistakes, although there wasn’t any made.  The comments said behind your back about working with a employee with a disability was heart crushing to me, Co workers I thought that were my friends, my family and I came home from work the last 6 months crying every day because of how I was being treated by a particular employee at my job, she made me feel so bad about myself and I was allowing her to make me sicker and sicker and my husband said there is no job worth this.  I thought about it and he was right, I was loyal for 15 years and my intention was to retire when the Doctor did, but this particular employee did everything  she could to make my life a living hell.  The Doctor didn’t want to hear it, so  I went to a disability attorney and found out my rights and found out I could sue due to her behavior, her discriminating words not only against me but applicants for jobs,  but I didn’t want to hurt the Doctor or the practice or keep the negativity in my life.  She was toxic and broken and I couldn’t let her treat me that way anymore, so I left.  It was the best decision I ever made.  Although I am still sick I don’t have that added stress and toxicity in my life.   My job was for the patients, and that’s why they liked me and felt safe with me, they knew I would take care of them.  But most patients are on my facebook page and keep in contact.  When I run into patients they hug me and tell me how much they miss me and the office isn’t the same with out me.  So I know I made a impact and now my heart is to help others with invisible illnesses.  So i am still doing my hearts work just in a different way.  My support group is awesome and when we share our tears and we share our stories, I know I am on the right road.  Kelly

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Dr fighting Fibromyalgia.

Local doctor fighting fibromyalgia
New sleep study aims to reduce most common symptoms for affected patients
SouthCoast Health’s Dr. Victor Rosenfeld’s recently published a sleep study that simplifies the diagnosis for fibromyalgia, could improve pain and stress as well as address the lack of sleep in patients affected by the syndrome.

Rosenfeld, head of the neurology department and medical director at SouthCoast Health, had his study published in the Journal of Clinical Neurophysiology’s April 2015 edition.

Rosenfeld tested nearly 500 patients with and without fibromyalgia in a sleep lab. While the patients slept, Rosenfeld observed their brain waves through a process known as quantitative EEG and utilized the process to monitor the patients’ alpha waves.

The brain creates alpha waves while it is awake, Rosenfeld said. He detected alpha waves in the vast majority of fibromyalgia patients but did not in those without fibromyalgia.

“Even though people with fibromyalgia are technically asleep, their brain waves look more like they’re awake,” Rosenfeld said. “In essence, people with fibromyalgia are pulling an all-nighter every single night.”

Such a finding explains why most fibromyalgia patients often report feeling tired, fatigued, achy and unfocused, he said.

Fibromyalgia is the most common widespread pain syndrome in the world, and it affects between 2 and 6 percent of the population. Women are eight times more likely to develop fibromyalgia than men, according to Rosenfeld. Fibromyalgia’s cost to the U.S. economy is estimated at $10 billion annually.

Rosenfeld’s study has the potential to reduce that figure by eliminating unnecessary testing for the condition.

There is no specific test for fibromyalgia, so it’s not uncommon for patients to visit with cardiologists, gastroenterologists and rheumatologists before they get a proper diagnosis.

“Fibromyalgia patients have a bewildering array of symptoms, so they’ll typically go see many types of doctors,” Rosenfeld said. “Now we can easily and quickly identify the condition and save millions of dollars potentially from wasted time and diagnoses.”

The sleep study is widely available. Its easy accessibility allows patients to receive a quick diagnosis and to get started on a treatment plan that addresses their symptoms.

Since there’s no known cure for fibromyalgia, reducing pain levels in patients is important, Rosenfeld said. Exercise, especially aquatic therapies, as well as improving one’s diet helps reduce symptoms.

Above all, improving patients’ sleep is at the top of the agenda.

“Focusing on the patients’ sleep and helping their sleep is probably one of the most important things that we can do,” Rosenfeld said.

Rosenfeld published the study, which is titled as “Polysomnography With Quantitative EEG in Patients With and Without Fibromyalgia,” alongside co-authors Dana N. Rutledge, a nursing professor at California State-Fullerton, and Dr. John M. Stern, director of the Epilepsy Clinical Program at UCLA’s David Geffen School of Medicine.

Rosenfeld, head of the neurology, is board certified in neurology and sleep medicine and has been published in several medical publications on topics such as sleep medicine, Huntington’s disease and sleep apnea.

I have fibromyalgia and it is awful, fatigue, brain fog, body pain, The only exercise, I found that doesn’t hurt me as bad as others is swimming.  But I still pay for it the next day.  I always pay the next day for any extra activity.  I have found taking a warm bath helps before bed, 3 ft heating pad.  Sometimes I have to elevate my legs others I don’t .  I have learned to learn my limits, and becareful not to do to much.  I can’t find any triggers accept stress, lack of sleep and doing to much.  I can’t find anything in my diet accept I must keep my protein intake up.  Anyways if anyone has any ideas on how to help ease their symptoms, let’s talk.

Kelly

The intent of this site is to help others through sharing information.  Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.

 

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