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Fibromyalgia: A Very Different Disease

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Reprinted with the kind permission of Cort Johnson

Rheumatologists, the specialists many people with fibromyalgia see, treat people with diseases of the joints and muscles and immune problems. These diseases run the gamut from many types of arthritic disorders to autoimmune diseases such as lupus and Sjogren’s syndrome to gout and hard to classify disorders such as fibromyalgia (FM).

A recent survey of symptom patterns in rheumatologic patients seen over a year at an Israeli hospital provided an opportunity to see where FM patients fit into this mix.

The mixture included some heavy duty illnesses – some of which can kill and many of which are painful, as well as “little” fibromyalgia – a disease that still gets little respect from the NIH and many rheumatologists. Let’s see how FM stacked up against some heavyweights.

The Study

First, the patients were broken up into 10 categories: polymyalgia rheumatic, psoriatic arthritis, gout, systemic lupus erythematosus, rheumatoid arthritis, the spondyloarthropies, the inflammatory rheumatic disorders, the non-inflammatory rheumatic disorders, osteoarthritis, and fibromyalgia.

Then age, gender, disease duration, location of pain, pain level (VAS), fatigue level (VAS), and functional level (VAS) were measured.

Results

Female Dominance Again
With regard to age, the survey revealed two subsets of patients: a middle-aged subset encompassing most of the disorders, and an older subset consisting of people with gout, polymyalgia rheumatica, and osteoarthritis.

With the exception of gout, psoriatic arthritis and the spondyloarthropies, females dominated the rheumatic diseases. The highest percentage of females occurred in fibromyalgia (86%) and polymyalgia rheumatic (94%).

The Fibromyalgia Quadefecta

Pain Location….Everywhere
Joint pain was relatively rare (8.5%) in FM but widespread pain was rampant (93%). In fact, FM stuck like a sore thumb (pun intended) in this category. The vast majority of people with rheumatologic diseases experience localized pain; few experience little if any widespread pain. The disease with the next highest percentage of widespread was lupus – where 20% of the patients experienced it.

FM was a disease alone in this category. It wasn’t the only category it would stick out in, though.

Pain Intensity – Check
FM patients rated their pain intensity higher than did the patients of any of the other diseases. That was quite a feat considering that FM was matched up against the deformed joints of people with rheumatoid arthritis, the swollen and notoriously painful fingers and toes of people with gout, and the inflamed blood vessels and connective tissue problems of vasculitis and systemic sclerosis.

The average pain score – 87.5 out of 100 – for people with fibromyalgia couldn’t get much higher. The next highest pain score (osteoarthritis) was 20 points lower. According to this study, people with fibromyalgia were in 30% more pain than osteoarthritis patients. Gout, with its 39.4 score, is hardly in the discussion. FM patients were in more than double the pain than gout patients. Either gout is a less painful disease or it’s being better controlled or both. However it’s happened, many, many FM patients would be very happy to be in as much pain as people with gout.

Fatigue Levels – Check
The fibromyalgia patients also handily won the “who has the most fatigue?” race. Topping the charts at a remarkable 91.3 score out of 100, their fatigue levels far outdistanced that of the next closest group (69.9) – the non-inflammatory rheumatic disorders.

Functioning – Check
The FM patients weren’t done, though. They also easily won the “whose disease inhibits their functioning the most” contest. Once again, the race wasn’t close. The FM patients scored about as high as you can get (85.2), easily outpacing the second-place finisher – osteoarthritis (65.9).

Consistently Bad
Fibromyalgia was also the most consistently bad disease to have. Pain, fatigue and functionality scores were more variable in all the other diseases. The fact the FM scores were pretty tightly bunched suggested that most FM patients had pretty high levels of pain and fatigue.

This may reflect a lack of good treatment options. The study indicated that half the FM patients were treated with NSAIDs, a third had no treatment, and the remaining patients were treated with physical therapy, analgesics and tricyclic antidepressants. It’s no wonder that FM patients at this hospital had the second lowest number of return visits.

Conclusions

In the end, the survey suggested that compared to fibromyalgia, some pretty serious illnesses are relative walks in the park symptom-wise. Take lupus. Lupus is a serious disease which can kill you. For me, lupus would be pretty high on my list of diseases I really would rather not have, yet the lupus patients at this hospital rarely experienced widespread pain and reported about half the pain, fatigue and problems with functioning that fibromyalgia patients did.

The findings were reminiscent of a study Health Rising reported on recently where people with chronic fatigue syndrome (ME/CFS) essentially trounced people with major chronic illnesses when it came to quality of life and functionality.

These are not races anyone wants to win, but they are races the medical community should pay attention to.

A Different Type of Disease

The findings help us understand why rheumatologists have had such difficulty embracing fibromyalgia. FM doesn’t look like most of the diseases they deal with. It doesn’t produce the deformed knuckles found in rheumatoid arthritis, the swollen toes seen in gout, the eerie looking blood vessels that occur in vasculitis or the altered x-rays of osteoarthritis patients. It’s basically invisible to all but those who suffer from it.

FM, however, produces more intense symptoms that any other rheumatologic disease. It’s much harder on people than the other diseases rheumatologists treat.

The widespread nature of the pain in FM suggests that it’s being produced differently than other rheumatologic disorders. The evidence suggests that it alone is a central nervous system disorder.

It’s possible that a widespread disturbance, say, in the ion channels that transmit pain signals or some other systemic feature in the body is whacking the brain with pain signals in fibromyalgia. Given the widespread nature of the pain in FM, though, and the many other symptoms found in the disease, the focus at this point has to be the central nervous system (CNS). The CNS is one of the few organs able to cause such widespread symptoms and distress.

Even lupus, known as the great mimic for all the different organs it can attack, doesn’t begin to produce the kind of widespread distress seen in FM.

Wrong Home

These findings suggest fibromyalgia never really belonged in the rheumatologic camp or in NIAMS (The National Institute of Allergy and Musculoskeletal Disorders) – which is essentially ignoring it – anyway. Where it and chronic fatigue syndrome (ME/CFS) belong and which diseases they are most closely allied is an important question.

ME/CFS and FM have traditionally been allied with diseases like IBS, GWS, TMJ, interstitial cystitis and mood disorders. We have to be wary of the fact, though, that symptoms can be generated in a plethora of ways. The so-called functional disorders mentioned above may not in the end be as closely aligned as we think.

The ability to do genetic analyses on plants has, for instance, in some cases upended hundreds of years of classification efforts based on plant morphology. It turned out that some plants that looked quite different ended up being close relatives. It’s possible that a tweak in the nervous system one way or the other could manifest itself as multiple sclerosis, ME/CFS/FM, Parkinson’s disease or some other disorder.

More recent studies suggesting that migraine may occur with greater frequency in ME/CFS and FM than any other diseases casts a new light on them. (Could migraine with its pain, stimuli problems, strange triggers and fatigue be construed as a different kind of fast-moving and very intense FM flare?)

ME/CFS and FM’s place in the medical universe will ultimately be determined by research that uncovers the molecular roots of the diseases.

Fibromyalgia’s big problem right now in the research world is that it’s not clear where it fits. Studies into better funded pain causing diseases such as osteoarthritis, rheumatoid arthritis, lupus or low back pain may not tell us much about fibromyalgia. With FM funding in the dumps, FM patients will probably have to hope that basic research efforts uncover something of value to them.

There may be some light at the end of the tunnel, though. The National Institutes of Health (NIH) rather begrudgingly recently stated that it will give “burden of illness” more priority in its funding decisions. If that’s so, then FM with its high prevalence (11 million – U.S.) and very high rates of pain and fatigue and reduced functioning should be at the top of the list.


About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

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4 thoughts on “Fibromyalgia: A Very Different Disease”

  1. lisamary101 says:

    The results of this study are not surprising at all to me. I was diagnosed 20-some years ago with Fibromyalgia, and am well aware how much of my life it tries to take from me. Keep going, keep studying this monster. It isn’t fatal in and of itself, true, but there are days when the pain and fatigue are so sadistic I have wished for FM to just go ahead and finish me off. Add to that the lack of effective treatments, lack of compassion on the part of the medical community and the accompanying “professional” opinions that I am either crazy, lazy, or drug-seeking. FM is Hell.

    Has anyone done any geographical studies looking for clusters of FM? Lately I have been thinking about my childhood home, located next door to a one-man auto body shop. Back in the unregulated day, he buried car junk in his back yard, including lots of old batteries. His daughter and I played there. I grew up eating fruits and vegetables grown from our garden that lay less than fifty feet from that “dump”. Maybe you can guess where I am going with this. His daughter was diagnosed with Multiple Sclerosis in her twenties; I was in my thirties when a rheumatologist gave a name to my mysterious misery: Fibromyalgia.

    I know that an anecdote about two little girls does not a study make, but is it possible science has yet to ask the right questions? Sometimes I think I should be seeing a neurologist instead of a rheumatologist.

    Just my two cents worth of rambling. Keep going. I am counting on somebody figuring this out.

  2. rakiethebird says:

    Of late, I discovered a huge following -led by research physicians that have had off-label success with low dose naltrexone (LDN). Naltrexone is used to wean addicts of drugs and alcohol off their addiction. There is a web page for learning about it http://www.lowdosenaltrexone.org/. The proponents of this treatment, the LDN Trust http://www.ldnresearchtrust.org/ are well-organized and are pushing for more research into its effect on pain with FM. But no one wants to fund research or follow through because it is a generic. Pharma won’t make big bucks studying it or having doctors prescribe it. In fact it will compete with the big-buck FM meds out there like Lyrica and Savella so they will fight to NOT have it approved. This is how research works. It’s all about the money. You may be able to get your doctor to prescribe it off-label, but that means you pay all the costs yourself. Before trying it, I suggest you consult very carefully about weaning yourself off your current pain regimen and make sure that whatever else you take doesn’t cause adverse effects.

  3. lisamary101 says:

    You are so right about money being the driving force behind any “treatments” for us FM-ers. This specific issue is why I am not all that eager to see yet another doctor, because I don’t want to be anyone’s guinea pig when the goal is profit rather than successful treatment without horrific side effects. That nalaxone works ought to be a significant clue, because its actions are its actions. It is not doing something new; it is interrupting a process or initiating one out of its properties. One would think that an untapped market of suffering people would be sufficient incentive to pursue the possibilities.
    As for me, I have had some modest success with a few essential oils. I say modest because at this point I am fighting to keep the function I have so I can participate in my own life. If I just gave up, and believe me there are so many days when I just want to say screw it, the subsequent inactivity, crappy diet and weight gain, de-conditioning, et al, would create their own health problems. You know the ones, we get them from making “poor lifestyle choices”. If it weren’t so awful it is pretty funny when you stop to think about it. Does this conversation actually take place in a boardroom somewhere: “Oh, don’t bother with fibromyalgia. If we wait long enough they’ll get something really GOOD and we can make big bucks off that!”

  4. sla31046@zoominternet.net says:

    I understand it cost a tremendous amount for studies on fibromyalgia alone. 20-30yrs I went to a Dr @he told me I was crazy, so of course I left crying. From that time on I am still being treated for so many symtoms. With that said I would love to be treated the natural way. My fixed income.
    Painfully speaking Shirley

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