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Comments on Dr. Pellegrino's Article, "Genetics - Fibromyalgia Suspect #1"

  [ 19 votes ]   [ 2 Comments ] • August 3, 2011

The feature story in the last Fibromyalgia HealthWatch newsletter - "Genetics - Fibromyalgia Suspect #1" by Mark Pellegrino, MD - generated some interesting comments that highlight the many possible roads to fibromyalgia, and how often genetics seem to enter in. Do any of them mirror your own experiences with FM?

This Article Follows My Experience Exactly
My mother has been diagnosed with both Fibromyalgia and Parkinson's. I have very early memories of her always being sick and family and doctors calling her a hypochondriac.

I first became aware of my Fibromyalgia [after a very stressful event]. My doctor at the time diagnosed me with "Epstein-Barr Syndrome" and I managed my illness with careful budgeting of my energy for the next 25 years until I went through early menopause at age 48. This life event kicked the Fibromyalgia up to the point that I was unable to continue working outside the home in 2009 and have one of the worst cases of Fibromyalgia my doctor has seen. Thank you for this article; it all makes a bit more sense now. - J

Fibromyalgia Same as Hypothyroidism?
I can tell you that since I've been on thyroid medication (T3 only), my "Fibromyalgia" symptoms, including brain fog, body pain, fatigue, insomnia and depression have improved tremendously. I suspect hypothyroidism actually the same as fibro... It's just that the lab tests for thyroid are so bad that when they come back normal, they tell you that you have fibro... or that it's all just in your head. - U

Genetics? Yep, I Agree
My mother complained from the time I can remember that she didn't feel well. After I was diagnosed with FM, I realized my mother must have had it all these years as well. It all made sense and boy... did I feel guilty for thinking that it was all in her head. ….I've had all kinds of emotional and physical trauma, surgeries. Stress has always been an issue with me. Because of finances and a very sick husband I'm now broken out in a horrible case of hives that I've had for the last 5 months. You wonder...does it ever stop?

My thyroid is fine. The hot flashes are horrible. Had a hysterectomy at 27 and went on hormone replacement therapy. I'm going to be 60 in November and have been off of HRT for the last 2 years, but I'm trying to go cold turkey and tough it out. I take Prozac and antihistamines for the hives (it's not working) and do my best to budget and save my energy. My BP is great and my blood glucose excellent. So much for the golden years! Ha!

I still try to be active in local theater and get out, but it's getting harder. I work full time, too. I have to. Any solutions that don't cost much? At least my migraines are gone now that I'm off HRT. Had those buggers ever since I had gone on HRT but didn't associate them (nor did my doctors) with the migraines. Migraines went away as soon as I stopped taking hormone replacement therapy. Which is worse? Constant hot flashes or migraines? I'll take the hot flashes I guess. :) - T

Fibromyalgia Cause - Trauma?
There is/was nobody in my family who was afflicted by Fibromyalgia. This illness began in 1966 after jabs of Tetanus Toxoid which made me very ill. Booster shot in 1975 and the adverse reaction was much worse. Now after any injury or reaction to medication, relapses occur. Has anyone researched the role of vaccines in the onset of Fibromyalgia? - R

Hypermobility Syndrome, Celiac & FM Genetically Interrelated?
I agree that there is evidence of a genetic basis for fibromyalgia. I was told in my twenties I had Hypermobility Syndrome by Prof. John Yorke [rheumatologist], but GP insisted Fibromyalgia and even refused to refer me to Prof Yorke for management of pain, etc. Due to my experiences I would like to urge all patients with the FMS diagnosis to insist on tests to exclude celiac disease and hypermobility syndrome, before accepting the FMS diagnosis.

Articles by Dr. Jaime Bravo [rheumatologist] and scientific articles on POTS and hypermobility have given strong evidence for a parasympathetic dysautonomia associated with hypermobility syndrome [dysregulation of the autonomic nervous system]. This explains the non-articular symptoms such as migraine, low blood pressure, respiratory problems; e.g., hayfever, previously not explained by a strictly articular model for hypermobility syndrome. Basically the joint pain being seen is due to stress fractures brought on by over-extension of joints.

On a personal level, myself and a niece have both found an improvement in stamina and energy levels on a low tyramine diet. Tyramine is also related to migraine. But I came across, which deals with a genetically based dysautonomia that responds well to low tyramine diet. The fibromyalgia diagnosis may be used by GP's to placate patients with OTHER problems such as hypermobility syndrome or celiac disease that they have not even considered, much less definitely excluded. Therefore I urge patients to consult specialists such as rheumatologists or gastroenterologists before accepting the FMS diagnosis.

Of course, there is also a possibility they have a combination of these problems, and eventually genetic testing will provide a definitive diagnosis. - M

Flu Shot Seemed to Trigger Fibro
I refuse flu shots now since I got fibro symptoms after one of the few that I did get. I had allergy tests and stopped eating foods I am allergic to. I've been taking iodine, for bromine poisoning using Dr. Brownstein's protocol. And boron for fluoride poisoning. I feel much, much better. I will be starting on thyroid soon. - K

CFS/Immune Dysfunction; Then Fibro Kicked in After Surgery
I got sick in 1989. I can remember my first doctor visit. I was so exhausted, swollen glands and a fever for months that wore me down. The doctor tested me and said I had mononucleosis AGAIN. I had it at 12. He wanted to give me Deseryl... I said what is that? He told me it’s for depression. I told him I am not depressed, I am sick, FIX ME! I don’t have time for this. So I just kept working, then the loss of balance came on, brain fog... meanwhile I tried to cover it up and keep pushing, and I noticed my customers getting sick with pneumonia/ bronchitis and I was starting to feel like Typhoid Mary!

When ever I had a really bad day, everyone around me got sick. By 1990, I started hearing about it in the news. So I went to a doctor that specialized in CFS. He said I was positive for all the tests available to diagnose CFS. My blood tests were: Epstein-Bar Antibodies = 1:1280; Epstein Bar Nuclear Antibodies = Positive; Epstein Bar Early Antigen = Positive; HHV-6 IgG = Positive (My Mother did get Roseola every year [caused by human herpesvirus 6]. She passed away at 51); Anti-Thyroid Antibodies = High; Anti-Thyroglobulin AB = High; Anti-Microsomal Antibody = High; Anti-Nuclear Antibody = High; Anti-Candida Antibody IgG = High; Anti-Candida Antibody IgA = High. Lymphocytes: T Helper Cells = High; T Suppressor = Low; Helper/Suppressor Ratio = High.

By the way, my doctor told me NOT to ever give blood, and I never did. He said they don't know enough about CFS, and it may be passed through blood.

I have been on Thyroid since 1990. It’s not the answer. I had a neck surgery in 1995, and that is when the Fibro really kicked in. My symptoms were more Chronic Fatigue and Immune Dysfunction than Fibro - until the surgery.

I am 60 now, and any bit of exercise or stress (even good stress !) has a price to pay. Very heat intolerant also. I have not given up, but you have to give in. I heard about XMRV, wow... just in time. 20 years. And they still are not sure.

All I can say is that I do think it’s a virus of some kind. I heard there was an XMRV-"like" synthetic virus engineered in the 80s... Was that it? Who knows. I am too old to care anymore. Quote from site: “Surprisingly it was neither identical to MuLV nor to the novel xenotropic MuLV related retrovirus (XMRV) but showed 99% identity to a synthetic retrovirus which was engineered in the 1980s.” Sick and Tired of Being Sick and Tired - K

For Me, Long-Term Untreated Hypothyroidism = Fibro
I was diagnosed with fibromyagia in the ’90s before I had ever heard of it. By then I had lived with chronic pain my entire life. Now I know what FMS really is - Long term untreated or undertreated hypothyroidism. See [Dr. John C Lowe]. It is so difficult to find this out. I read all the FMS books and then all the thyroid books. The testing for thyroid the last 40 years is why we are all left suffering! The TSH blood test is keeping us sick…

[I believe] my dad died of it untreated… My life now (at 48) - I can sit, stand, walk, run, bike for longer than 20 minutes without being in horrible pain… I can still run 3 days a week about 7-8 miles a run, after being told I would never run again, I would never be cured of fibro.

Please read Hypothyroidism: The Unsuspected Illness (by Dr. Broda Barnes), Living Well with Hypothyroidism (by Mary J Shoman), and Hypothyroidism Type 2 (by Dr. Mark Star), and you will see why your hypothyroidism has either not been found or has been undertreated and why it is causing you so much pain. I too, had early menopause… lost most of my hearing… had severe esophagitus in my late teens and early twenties… migraines, etc. etc. Yes low thyroid causes all these problems and many more… Hope this helps. My life has changed! - V

Family Has Predisposition to Something Similar to FMS
My suspicion is that rather than being a "catch-all" diagnosis there will emerge a clearer clinical definition of fibromyalgia, and more refined diagnostic tools in the future.

In 1967, at the age of 25 I had low back pain… and diagnosed with ankylosing spondylitis… In 1991 I was told I could not have AS… About 11 years later I was seen by a rheumatologist… who said FMS… I have gradually collected a range of ‘supplementary’ conditions… My eldest sister has thyroid problems, the next Rheumatoid Arthritis, and my brother has a number of the same symptoms as I do, but at a level that means he has not gone for treatment…

In discussion with my siblings we agree that my father may have had something similar to FMS - he had a disability pension at the end of World War One for what would now probably be diagnosed as post traumatic stress syndrome: war experiences + his mother died in a fire when he was 6.

So in my family, of which I am the youngest, there appears to be a predisposition towards something similar to FMS. What the precise trigger is that fires-up the disease interests me, as does the possibility that FMS may weaken defenses to other illnesses: e.g., FMS = pain when moving = tendency to overweight = diabetes. I also think certain food tends to make it more active (for me, tomatoes, citrus fruit, alcohol, red meat). - R

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Article Comments Post a Comment

Posted by: kcusa
Aug 3, 2011
Thank you for your share in the article. You had mention of vacines. Through my years of study > 15yrs now with FM/CFS there is an intersting note @ the POLIO vacine that was the standard for people of your parents time & also of yours. To me there is a possible link there that gives due attention. It isn't until the immune system is comprimised, whether through stress, surgery..etc, that for some reason there is no turning back. The POLIO vacine stays in the blood system. Your feedback would be looked upon as sharing experience that I look forward to. I'm nearly 60 and have been through some similar journey as you. Kindly Kathleen
Reply Reply

I'd sure love answers before it's to late!
Posted by: slopok8225
Aug 12, 2011
As a preteen and teen ager I was always extremely tired. I can remember that I would take naps falling asleep on the living room floor in the afternoon and sometimes missing dinner and didn't even bother going to bed, only to wake up in the morning when my sisters woke me. But I always pushed through it when I really needed to and just dismissed it as i was over doing it in whatever I was doing.

I joined the Army at 17 and during Basic (I know it is tiring and things) I could never rest enough and again brushed it off. Join Special Forces after finishing Jump school and Air Assault school and again through it all I was always so exhausted but pushed myself through it. Finally during the Gulf War a series of bad things happened to me. First I got very ill from the PB pills they gave us as protection against Anthrax. Then During the Month of December, Sadam fired scud missiles randomly across the desert. I was assigned to a team that traveled with a chemical unit and several times chemicals were detected by the equipment on the vehicles we used, but when reported to the top Brass, it was always dismissed as faulty equipment. Again I got ill for two weeks to the point I had two IV’s running bolis to keep me hydrated, was unconscious and ran temps that went up and down as high as 103.5.

After getting out of the hospital and returning to work I wound up having a building collapse on me during a mission and broke my upper back. I was sent to Germany, then back to the states and eventually was medically retired due to my injuries. After returning home, I was ill enough to be hospitalized once a month like clockwork for several years and no doctors were able to explain my illness. I became more and more tired to the point I could not function for more than an hour or so at a time if I was doing anything like walking, lifting or having conversations with people, because of brain fog. I started fighting to have my 30% disability raised to 100% and it took me 12 years to get it. My final diagnoses was Gulf War Syndrome which later Fibromyalgia/CFS was added to it. I went through this whole story to show just how many possibilities there were for why I got sick. It could have been something I had all my life and just dismissed it till it was too late. It could be due to the chemical PB pills or the broken back. Or it could be all of them compiled to the point that my body could not handle it anymore. I am 42 years old and have had 3 strokes and two minor heart attacks which are being contributed to extreme thinning of the arteries, possibly caused by the PB pills. I have over a 35% bone density loss, and have so many diagnoses that it takes me two pages typed to carry with me in case of an emergency.

So is this genetic ( something I had from a young age and never took it serious), something that was caused from pills the Army gave me, something triggered by an injury or all of the above? I would sure love to learn the truth sometime before I die. But as ill as I am on a daily basis and always getting worse, I don’t know that the medical Doctors, scientists and pharmaceuticals will figure it out in time at least to help me!


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