Comments on:

By: queenbee

queenbee — Wed, 08 Jun 2011 03:36:09 +0000

In reading the article it appears that the increase blood flow is there due to the increased pain level–but this blood flow is not a symptom, it is a reaction to the level of discomfort so therefore signals that the pain felt by sufferers is NOT psychological but physiological.

By: queenbee

queenbee — Wed, 08 Jun 2011 03:32:38 +0000

I believe this is an autoimmune disorder similar to arthritis and the catalyst for symptoms or increase in symptoms are allergies either environmental or food/drink allergies.

I base this on the alleviation of symptoms when some people leave the areas they live in and go to places like Florida or Colorado (or vice versa) and when they stop drinking so much cola or products with carbonation. People are still a long way from realizing that allergies are not simply biological nuisances– they are quite possibly so deadly and debilitating and we do not yet have the bioinstrumentation to connect the dots and see that many ailments that are life threatening may have their start in allergies–some like pollen can be alleviated to the point that some symptoms are suppressed but that does not mean the damage within the body does not continue at a cellular level.

I believe that when the damage exceeds a certain point it shows up in the muscles and joints as repositories for inflamation–the net result of allergic reactions that have failed to be expressed and dealt with–in the end, the results can be devastating if not deadly.

By: Jel

Jel — Mon, 25 Apr 2011 11:44:25 +0000

I had excellent results being treated at a pain clinic in NYC run by Dr. Norman Marcus. I haven’t had spasms in 20 years after having them two years each and every day.
One of the things that infuriates me is my pastor allows a newsletter in the back of the church that blames fibro on birth control pills (not specific ones, which tells you a lot right there) and that’s why “only women” get fibro.
If you find a doctor who understands fibro is real you’re ahead of many of your peers.

By: june solley

june solley — Wed, 23 Mar 2011 12:40:29 +0000

Thank God I found this article. I was told I have Fibromyalgia 2 mos ago. For 4 mos I’ve had every test you can imagine and i thought i was going nuts. At 60yrs old i was healthy as a horse then i started having these spells going numb in my face, arms and legs. Having panic attacks. I’d never took even a nerve pill in my life. ekg’s, mri’s, etc. showed nothing. Then 2 eeg’s showed brain abnormalities. The doctors said it couldnt be seizures because it was on the wrong side of my brain and all my pain and numbness was on the other side. I’ve read everything i can find on this disease and i have every symptom except menstral cramps. I laughed that I was too old for that. But It’s the confusion and panic that scares me the most and the pain in my face and head. I never had a headache before. I am so glad i found this web page and reading other women that have the same thing. I thought I was going nuts.

By: Robin

Robin — Sun, 12 Dec 2010 11:39:56 +0000

Well, the big fibromyalgia mystery got solved for me – it’s Lyme disease, a bacterial infection that I got from a known tick bite on my foot. Ten weeks later, I got sore neck and shoulder muscles. A year after the bite, a really stiff neck. 18 months after the bite, full-body muscle pain. I was told I had fibrocitis, with that term later changed to fibromyalgia.

25 years later, I found out it was really Lyme disease, a bacterial infection that goes into the brain within 12 hours of exposure and starts inflaming the nervous system, including the spinal cord, presenting as meningitis (the stiff neck) early on for so many of us. The spiral bacteria also corkscrew their way into any of our tissues and inflame them. Google for Lyme spirochetes and study what they do – they cause all our fibromyalgia symptoms. Not true that we don’t know what it is – we do now. http://www.lymenet.org is a national site with info, ongoing discussion and referrals to Lyme-treating doctors. Also check out Burrascano 2008 guidelines.

By: hal

hal — Fri, 10 Dec 2010 21:09:37 +0000

in this condition of fibromyalgia–POTS all belong under the sink-in the pantry “POTS”-MY EYE!

By: hal

hal — Fri, 10 Dec 2010 21:05:36 +0000

sleep on memory foam mattress at least 3 inches thick and you will be amazed at the improvement.FOR SURE!

By: hal

hal — Fri, 10 Dec 2010 21:02:46 +0000

i believe the brain changes are a result ,not a cause of the fibromyalgic syndrome.Also,that the meds for it are ineffective or are in themselves risky and should be omitted. The syndrome etiology is a mystery but in time the symptoms fade away. i doubt any dietary or allergic cause. It can last for years.Keep exercising normally and avoid cold environments. this is NOT an imagined illness but very real.

By: Sophia

Sophia — Thu, 09 Dec 2010 02:53:50 +0000

I was initially diagnosed 14 yrs ago with fibromyalgia. I was quite ill & spent the next few years researching the syndrome as much as possible. I came to the conclusion that I didn’t have fibro. While I had muscle/joint pain, fatigue & gastro problems, I had other problems too. But I didn’t have the characteristic sleep disorder. So long story short, after seeing many doctors & having many many tests done, the verdict was in. I was diagnosed with Postural Orthostatic Tachycardia syndrome & Ehlers Danlos syndrome. The hallmark of POTS is erratic blood flow (which attributes to the tachycardia). If I’m up & about for too long a stretch, I get a headache, my vision gets blurry & my upper back/neck muscles cramp. 10 minutes to a 1/2 hour of laying down helps right this. I’m on a high salt/water diet, which has helped immensely. I’ve got increased stamina & less pain. The doctor who diagnosed me is a prominent DC physician & told me in confidence that he wouldn’t be surprised if a number of people with fibromyalgia have POTS also/or instead. I urge anyone with fibromyalgia to research POTS & ask your doctor to give you a tilt-table test. It’s a painless procedure.

By: Craig K.

Craig K. — Thu, 02 Dec 2010 22:29:21 +0000

Fibromyalgia is caused by neurotoxicity from artificial food additives, particularly MSG (in many disguised names), aspartame and other artificial sweeteners, and artificial food colorings…all of which actually directly cause brain damage.

Avoid all processed food, and switch to all-natural, organic, whole foods to attain permanent relief. Be especially wary of condiments (ketchup, bbq sauce, salad dressings, etc…especially diet ones), as well as gum, mints, yogurt, and many many other items that contain these horrific toxic chemicals.

Google video on “Excitotoxins: The Taste That Kills” by Dr. Russell Blaylock for the scientific reality behind these toxins and how to read labels to avoid them.

And never forget that prayer is the best cure to any ailment…physical, mental, or spiritual! God Bless!

By: Pam C

Pam C — Fri, 22 Oct 2010 19:49:06 +0000

Best wishes to you all. I know how painful this condition can be. Day to day, your life changes. Diet and exercise are essential. What works for one may not work for the next. I have been personally struggling with this for over a decade but blessed to have been diagnosed soon and to have a loving family that understands. But that still does not make it all perfect in my universe. I want to work again, I miss the social interacton. I live in a small mountain community and it is hard when every employee at the grocery store “knows” I will need help out with my groceries. Don’t get me wrong, I know I am blessed….I just want my old life back…when I use to have dates and my dog wasn’t literally my best friend :)

By: Kat2

Kat2 — Fri, 10 Sep 2010 18:14:05 +0000

I was diagnosed with Fibromyalgia a couple of years ago, ran the route of medication, cpap machine, more meds, diet, exercise, etc. etc. I am now on a gluten free, dairy free, corn free, and soy free diet. I try to avoid all preservatives in my food as well. I don’t believe it will work for everyone, but it has worked for me. I am off all of my fibromyalgia meds, my cpap pressure is down from 12lbs to 9, my seasonal allergies are severly lessened, and my diabetes is back to a pre-diebetic state – and this is after 4.5 months. Sure, it’s a pain, and I truly miss cheese, but it’s worth it. I wish you all the best, and recommend that this is an area to look into.

By: Nat

Nat — Fri, 09 Jul 2010 15:44:28 +0000

Physical proof that we’re not right in the head. Well, DUH. We all knew that anyway…hehe. But, hey, it’s a baby step. Hopefully in the right direction and not right off the Cliffs of Insanity.

But all that biz aside, I’ve been treating my FMS–which I’ve had for decades and was finally diagnosed with in ’08 after a slew of eye-rolling specialists–like a mental illness anyway. A chemical process gone on permanent vacay. I guess I think that maybe if I look at it that way, it seems much easier to wrap my foggy brain around and accept. So this finding is just justification. Yes… YES… something IS wrong in my head! Now gimme that handicapped parking sticker.

And a reply to Susane… as far as I’ve read, brain and nervous system degeneration is NOT a product of FMS. Diseases like dementia and MS though… are. Multiple sclerosis and fibro have a lot of crossover symptoms (and often occur together–my sis has both illnesses) so keep bugging your neuro and rheumy for a proper diagnosis. Don’t bother with the ANA test because the basic kit most docs give usually give false negs. A spinal tap is the best test for MS.

By: Susanne

Susanne — Sat, 12 Jun 2010 01:29:13 +0000

I also saw a neurologist, and have also had MRI scans of brain and whole of spine, which showed multiple injuries or degeneration and highlighted areas of the brain, which I am still finding out about – liked this article, thanks. Have recommendations to see a rheumatologist,for further advice

By: Brandy

Brandy — Sun, 08 Nov 2009 21:00:30 +0000

This is interesting. Wish the US would do studies like these. I would volunteer if there was no experimental meds involved. The only problem with bringing up stuff like this to our doctors is that they think that you are trying to do their job better than they can-unless you have a very open and caring doctor who is willing to listen to you and try alternate forms of treatment. The truth is, most doctors don’t seem to take the time to educate themselves on the issue to help their patients the best they can. I can’t even begin to count how many doctors I have been thru. Some just don’t listen- period. They consider an easier alternate route in telling us fibro-suffers that it’s “all in our head”. Well, this kind of proves that it could be-with legitimate test results to show for it. “Gray” matter in the brain, no wonder we experience fibro-fog! Haha! From what I’ve heard, every fibro suffers’ case is different. Being one myself, I would have to say that ANY man-made drug that I have been put on has made my fibro worse. I am also in a small percentile of people that are non-responsive to meds. (I didn’t even know there was such a thing until my doctor told me this.) I experience the poor side effects of the drugs, but not the effects that they were designed for (such as anti-depressants). Due to this I’ve had to “adapt”. I have learned that keeping active (even though I have to drag myself out of bed some days)seems to be best for me. Some days I still don’t make it out of bed though-but I at least try. During the summer, I feel 80% better, almost “normal” again. I have considered moving to a warmer and drier climate because of this. (When I eat a raw vegan, no refined anything, no wheat, gluten, yeast, corn syrup, or anything else artificial (dyes and preservatives) diet, I do SO much better. The only problem with this is the cost, it’s out of my budget sometimes. I pay dearly for it too-my weight in turn suffers, which worsens the fibro too. I no longer smoke, drink alcohol, or caffienated beverages either. I have tried detoxes, which help some. I did a major detox about 3 years ago, and became extremely ill because I didn’t go thru with it gradually (or that is what I have read). On top of everything else that goes hand-in-hand with fibro, I also have heart arrhythmia, and intestinal malrotation. I was treated for meningitis and lyme disease before age 16, and have read that both of these have been found to link with fibro too. I have also had many back and neck injuries. The last believed to have triggered the fibro. Emerging into warm water, sitting near wood stove heat, light yoga stretches, and making sure I drink plenty of purified water daily help too. I want to look into acupuncture treatments. That’s about all that I have not tried holistically. Staying out of stressful and negative situations to the best of my ability seems to help. I’m not sure if this will help anyone else with ideas for new things to try in your own daily routine or lifestyle. If it does, than I’m glad to have shared a bit. I remember what it was like when I was first diagnosed and starting out “blindfolded”. The best advice I could give from my own experience is educate yourself. Listen to your body and do not put “trash” into it. Go ahead with what works, ditch what doesn’t. Love yourself, don’t give up, and try to stay positive and active. Always keep a sense of humor. May seem impossible to do some days, but keep trying. I still get thrown off, and I always have to remind myself to get back on. If I coud learn to do this, I think anyone can. It has been a life lesson for me. I have worked hard to get to where I am now from where I started out at. My next step is getting back to work. I would like to become a physical therapist. I figure that I have been “dealt the card” of fibromyalgia for a reason. I can understand now what people experience with chronic pain. If I can put that to good use to help others, than maybe I can find some purpose and reasoning behind my own trials with fibromyalgia. Best wishes to everyone. Remember that you are not alone.

By: Jeff Ostach

Jeff Ostach — Sun, 26 Apr 2009 13:54:13 +0000

Fibromyalgia will never be recognized as a legitimate illness in my lifetime. I guess it’s just all “mental” according to the medical profession. I give up trying to convince doctors, at least here in the Greater Milwaukee Area.

By: Gayle Dohnal

Gayle Dohnal — Thu, 23 Apr 2009 00:20:23 +0000

Yes. I am currently on the LEAP eating program; I am currently going wheat and gluten free. Very hard, as I am not a monk. Ha! I am still suffering w/ fibro symptoms. My fibro is not in the infant stage, however, it is severe, so maybe I am as good as I will get eating this way. I know when I “very” from this eating program, I get very sick! So I think there is something to adjusting your diet. Fibro is not a “one size fits all” disease, so sometimes what works for one person, does nothing for another. Thanks for all the in-put! Peace and restful sleep to you all.

Gayle :)

By: Pat

Pat — Mon, 01 Dec 2008 16:39:24 +0000

Has anyone tried a gluten free diet to lessen your symptoms?

By: Jeff Ostach

Jeff Ostach — Fri, 28 Nov 2008 21:55:22 +0000

An enlightening and informative article which further validates other studies done by researcher’s which is proving that our 24/7 pain is NOT psychological, although until society begins to acknowledge this disease, every individual fighting this “Invisible Disability” will have to endure doubts from family, friends, and the “mainstream medical community.”

By: Kat

Kat — Thu, 27 Nov 2008 18:58:40 +0000

I was diagnosed with fibro in early 1994 and was given meds to help me relax and sleep. It took a very large dose of one med to help me get to sleep. It was not a sleeping pill. I was told that water exercises at 90 degrees, was the best exercise over all for me. I did not retire until 1998 and could not find a place to do that after work. After retiring in ’98, then 2 years of doing almost nothing productive and resting most of the time because that was all I could do, I joined a health club that had a pool with the usual temperature of about 85 degrees. That was in the summer and it seemed to help even with the cooler temp. In the fall I joined a new club that had a therapy pool that is usually from 89-93 degrees and that was wonderful. I am still going there at least 3 times a week most of the time. I also go to a chiropractor when I feel I need to. After extensive therapy for about a year, I can tell when it is time for a few sessions to get back up to speed again. I do have the brain fog from time to time and fight the pain and lack of energy all the time. The pain is not as bad as it once was but I can almost never forget about it. I am still taking the original meds prescribed in 1994, but have been able to cut back on the one that I required in a high dosage.
More people are being diagnosed now and there is more recognition of the problem and that is helpful in many ways. You just have to hang in there, take your meds, find an exercise that works for you and go to bed when you know you need to. Best wishes to all with this awful condition and try to stay positive even when you feel there is nothing to be positive about.

By: tammy

tammy — Thu, 27 Nov 2008 17:44:12 +0000

Glad to hear Something Besides It is All in our Head(Emotional or Depression Based!)I just recently went thru the Headaches& Brain fog!Thanks for still REASEARCHING IT!! We All Still have so much to Learn. I Swear I have a New Symptom and later I will read it is Fibro. Based! ttyn T.O. tam

By: sophia jason

sophia jason — Mon, 17 Nov 2008 09:23:43 +0000

Very informative post. Fibromyalgia is a complicated diagnosed problem and it is still being researched for possible cures. Treating the disorder using western medicine can be frustrating. This is why many are now turning to old, eastern medicine for an answer. Alternative medicine like acupuncture could hold hope for many people suffering from fibromyalgia. I read about Fibromyalgia from The following website while looking for alternative medicines click here, read more about ACUPUNCTURE AND FIBROMYALGIA

By: VIRGINIA

VIRGINIA — Thu, 13 Nov 2008 19:20:08 +0000

I have Fibromylgia, also severe headaches, miserable tired all the time, this study may be on to the real causes of the severity of pain suffered. Does it cause problems with vision and balance due to the blood flow in the area of a Fibromylgia patient? God, I only pray no one has suffered as I personally have or been treated by doctors who don’t believe it is a disease. I wish each study done would bring a cure closer.

By: Jarret Morrow

Jarret Morrow — Sun, 09 Nov 2008 19:08:25 +0000

Very interesting study results on fibromyalgia.