People with Fibromyalgia

Hosted by Lori Brown
Group active since Tue, Apr 19, 2011

I suffer from Fibromyalgia and was looking for others that have it and thought it would be a good group to start so we can compare trigger points and medications.

Sassy Daniel
Dec 9, 2014

I have Fibromyalgia too.

I know one lady one here already from another site but I see by the dates there haven't been many listing lately or I may be looking at it wrong. I was told 5 years a go that I had it. It didn't really bother me or ay least I thought it didn't I thought my pain was coming from all my other medical problems. I had fallen years ago of my 18 wheeler , the flat bed trailer while hanging up my chains and fell to a concrete parking lot that had a hole in it. Of course I landed in the hole with my back in and half out. So I fractured my spine and messed up a few disc. Last year another disc was injured awhile trying to catch my husband who was trying to jump a curb in his wheel chair and he went back wards. He told me not to help him but I caught him and we both her my back pop. So now I has a disc that is bulging from both sides. They did another MRI and they said I have 90% arthritis's in my back now. I never send a doctor beg any one to be so careful as they did me because they say anything could paralyze me. So now when I went to the my doctors a few years ago he said I had 50 % arthritis around the injuries in my back and they put pain med and muscle relaxers. I also have had Hepatitis C for over 30 yr.'s I would not let them treat me . One when I heard how they did the biopsy and I had to be a wake I said no way. I waited 20 yr.'s before I went back to that doctor and he again insisted I get the biopsy. I refused again because one of the biggest side effect was depression and suicide attempts and I am not ashamed to admit it I had already tried 4 times to kill my self . Plus I could not afford it. Then when I ripped the orders open and it said cross match blood hold two pints stat I said hell no. I was by then a Jehovah Witness which I am still today. So I found a doctor who does the usual test and he does not push me to do anything else. Then 4 years ago I was diagnosis with Myelodysplastic Syndrome Leukemia which is a incurable cancer and is the lead off cancer into AML cancer. My blood count is low but I am able to live with it this . Low I have had to have Procrit Shots when it gets to low. So far I have been holding steady. Sometimes the hepatitis C and the leukemia have a battle over my iron. I can not take any extra iron because it would kill my liver. It is a battle some times and a lot of praying has gotten me through those times. On top of every thing they diagnosed me with Lymphedema last year. I had lost 1 45 pounds and was wearing a size 10 and 12 clothes. Long way from the 3 and 4 x. Since having this water come on to my body I have put a little over 100 lbs. back on and the doctor said it is all water weight. They have had to wrap my legs. Right now they haven't been wrapped because I tripped on a root in the yard and I just didn't fall I went air born. I have a knot on my let leg the size of a base ball that won't go a way . There are no blood clots in it. I had sand working back out of my leg that was embedded when I hit the dirt , even a piece of wood . My husband understands what I am going through because he was diagnosed with this 10 years ago in Md. He could hardly move. We moved back here and it didn't bother him that much until like me this last month. My doctor put me on 500 mg. of magnesium . I could only find 400 mg. I take it twice a day. This is my first day to take it. I take so many pills and not one of them is for the leukemia , Hepatitis C. !0 pills just in the morning along with 7 vitamins. I am tired of pills and pain. I don't think I would be here if it weren't for my faith in Jehovah and my husband. I have a friend that does not believe there is such a thing as Fibromyalgia because they can't pin point exactly what cause it. She says they took all the ailment they couldn't explain and threw together and gave it this name. She said she probably had it too. People like her just do not know. Sorry this is so long , but I saw this group and thought I might fit in here.

JM Avallone
Nov 22, 2014

ask and answer

just wanted to toss this out there I started one of those groups where cooks can come in and ask a question about anything cooking related so if you are a seasoned cook and can help please feel free to join to help others and if you need a question answered come on in personally I will do my best to answer and if I don't know the answer I am a very good researcher and will find the answser if all else fails the group is called ask and answer

Lori Newton
Jun 26, 2014

All natural solutions for Fibro

There are natural solutions to help ease fibro pain. I have helped several people feel better than they have felt in years. If you are on Facebook, I have a FB page where I share tips & information on what to eat & what not to eat. Also I am an independent ambassador with an incredible all natural health & wellness company called Plexus Worldwide. I would love to help you feel better.

Here's a link to my Facebook page if you want to "LIKE" it.

I also have a group here called Anti Inflammatory Eating. Fibro is an auto immune disease which is caused by inflammation. Eating an anti inflammatory diet and taking the proper all natural supplements is the key to controlling fibromyalgia.

Catie B
Apr 26, 2014

Fibromyalgia, new medical information..Part 1

I have done whatever I can do to make it acceptable to JAP. I think this will work, so here is part one!
Small fiber neuropathy, rather than central sensitization, may be responsible for the pain associated with fibromyalgia, some researchers have hypothesized.
Skin biopsies revealed lower mean epidermal nerve fiber density among patients with fibromyalgia compared with controls at both the calf, according to X. J. Caro, MD, of Northridge Hospital Med Cntr in Northridge, Calif., and E. F. Winter, PhD, of North Central University in Ariz.
This "surprisingly high prevalence" of decreased epidermal nerve fiber density suggested peripheral nervous system injury that could be contributing to pain, according to the authors.
There also was an inverse correlation between the epidermal nerve fiber density at the calf and interleukin , which is an activation marker of T-cells and macrophages, supporting the additional concept that this is an immune-mediated process, Caro and Winter reported online in Arthritis & Rheumatology.
"These observations indicate that the current operative paradigm in fibromyalgia, in which central sensitization is viewed as the prime mover in this disorder, requires modification," they wrote.
Neuropathy and Fibromyalgia?
Other experts urge caution, however.Daniel J. Clauw, MD, of the University of Michigan in Ann Arbor, who has conducted extensive research into fibromyalgia and recently wrote a clinical review of the condition in JAMA, said, "We simply don't know yet what finding small fiber neuropathy means in fibromyalgia."
"Small fiber neuropathy has been found in multiple chronic pain conditions so the meaning of this finding is unclear. Also, many cardinal symptoms of fibromyalgia (fatigue, sleep, memory, and mood disturbances) cannot be explained by neuropathy, and the distribution of the pain in fibromyalgia (e.g., headaches, irritable bowel, interstitial cystitis) doesn't match that of small fiber neuropathy. So we need to be careful about drawing conclusions from these findings," Clauw told MedPage Today.
The underlying pathophysiology associated with fibromyalgia continues to be uncertain, at least in part because of the lack of a specific tissue lesion.
"As a result, the idea has developed that a central nervous system origin for fibromyalgia is the only viable explanation for its existence," Caro and Winter wrote.
They noted that their interest into a potential peripheral nervous system origin for fibromyalgia stemmed from their observation that many patients described their pain in terms similar to those used by patients with peripheral neuropathy.
They previously explored this by electrodiagnostic testing and sural nerve biopsies, but such biopsies are difficult and expensive. More recently, reports have suggested that skin biopsies to quantitate epidermal nerve fiber density could be a useful tool for the evaluation of peripheral neuropathy. Part 2 cont.

Catie B
Apr 26, 2014

Fibromyalgia, new medial information part 3

so sorry, this is the last segment of the article, part 3.
Take these pages to your doctor is it is hard to understand, as it is from a more professional journal. But I wanted to get out the information as your Dr. may be able to help further in your case if he knows! :)

Another View

An editorial accompanying the study described the understanding of fibromyalgia as still incomplete.

"What we call fibromyalgia may be at the crossroads of different pathophysiological situations with a common clinical background phenotype," wrote Piercarlo Sarzi-Puttini, MD, and Fabiola Atzeni, MD, PhD, of Sacco University Hospital in Milan.

"Where does fibromyalgia originate? Is it due to a genetic and/or familial predisposition, a stress-related personality disorder, a psychoaffective disorder, or a post-traumatic stress disorder? It may be all of these or none," Sarzi-Puttini and Atzeni commented.

"All we can do is continue to look for tissue abnormalities and central processing alterations in an attempt to discover which come first, and then develop the best therapeutic (or, even better, preventive) strategy for the 2% to 3% of the population who suffer from the disease," the editorialists concluded.

end of article.

Catie B
Apr 26, 2014

Fibromyalgia, new medical information, Part 2

The Clinical Study

Between January 2007 and August 2011 Caro and Winter assessed 41 consecutive patients who met the 1990 American College of Rheumatology criteria for fibromyalgia, along with 47 controls.

Participants underwent sensory testing, laboratory analyses, physical examinations, and punch skin biopsies at the anterolateral proximal thigh and distal leg.

The majority were women. Mean ages were 61 years for patients and 48 for controls.

All patients showed a "stocking distribution" of diminished sensory perception.

Among other findings were:

A significant inverse correlation between age and calf epidermal nerve fiber density in patients (r=-0.29, P=0.03), though not controls
A trend toward a significant inverse correlation between epidermal nerve fiber density at the thigh and IL-2R in the fibromyalgia patients (r=-0.22, P=0.08)
A trend was toward significance between symptom duration and IL-2R (r=-0.24, P=0.07), though not with epidermal nerve fiber density at either calf or thigh
"As a signal, IL-2R has been thought reliable enough so that it has been used to monitor the course of some autoimmune diseases," Caro and Winter wrote.

In addition, patients' pain rating on a 10-point scale and physician global 3-point tenderness score correlated with each other (r=0.51, P=0.0005) although pain didn't correlate with nerve fiber density.

Pain and Immunity

Small fiber neuropathy is associated with both loss of sensation to the skin and peripheral pain, so the finding of the stocking distribution of diminished perception was "not unexpected," according to the authors.

"The painful peripheral symptoms of small fiber neuropathy, on the other hand, are thought to be due to a disproportionate hyperexcitability of the primary, lesioned -- but not altogether defunct -- small nerve fibers and a surrounding, structurally normal, but physiologically hyperexcitable group of secondary small nerve fibers responding collaterally," they wrote.

But small fiber neuropathy isn't an entirely new concept, according to Ali Askari, MD, of UH Case Medical Center in Cleveland.

"It has come to light in the last decade, and explains a lot of the uncomfortable feelings in the legs and hands and other parts of the body in fibromyalgia," Askari said in an interview.

The exact reason for decreased epidermal nerve fiber density in these fibromyalgia patients "is not entirely self-evident," Caro and Winter noted.

"Nevertheless, in the absence of data implicating any other known neuropathic disorder in the genesis of this lesion, we consider it likely that an immunopathogenic mechanism is at work in this patient population," they wrote.

"According to our data, this nexus between the immune system and fibromyalgia is likely to be influenced by a T-cell mediated arm. It may also involve factors within a system commonly referred to as neurogenic inflammation," they added.

Another View..continued in part three.
take all three pages to your doctor.

Catie B
Apr 26, 2014

My introduction-The Article on Fibro FINALLY posting part1

I cannot delete this discussion, even though I am the author of the box here.

This is not in order, as you see, down the page, but all the information is here, even the original source.
I would suggest you take it to your doctor.
I tried to inactivate the hyperlinks in part one only, and I hope anyone wanting to search more will go to the listed article.
I have been working on this for an hour and a half, so forgive the imperfections, and the lack of direct links. But this is an important connection that the medical community has made. It may be of use to your doctor, even to begin looking at intervention in a new way to assist you with your pain, your other symptoms, and help you in a more efficient way. At the very least, to explore new options himself, for his education into Fibro and how it may help him to research some of the new materials available!

I wish you peace, pain free, or reduced pain for better, happier, living, and a doctor who respects you, your story, and will work with you.

c g
Feb 11, 2014


i have fibromyalgia too. my doctor put me on savella. its wonderful! basically, it stops the pain thru the brain. i could work again. you get a savella pack to start out with. this starts you on a low dosage to work up to 50mg 2x a day. very little side effects and then they aren't enough to give it up. when i started on the high dosage i had to eat two pieces of toast or it would bother my stomach. now i can eat only one. my other side effect is only a slight lightheaded once in awhile. goes away right away, doesn't bother me when i'm driving either. hope this work for you.