Fibromyalgia: A Very Different Disease

[fibroite]

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).

[fright]View attachment 879 [/fright]A recent survey of symptom patterns in rheumatological patients seen over a year at an Israeli hospital provided an opportunity to see where FM patients fit into this mix.

Visual Analogue Scales of Pain, Fatigue and Function in Patients with Various Rheumatic Disorders Receiving Standard Care. Ofer Levy MD, Mirit Amit-Vazina MD, Refael Segal MD and Moshe Tishler MD. Department of Medicine B, Rheumatology Unit, Assaf Harofeh Medical Center. IMAJ • VOL 17 • November 2015

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 spondyloarothopies, 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 spondlyloarthropathies, females dominated the rheumatic diseases. The highest percentage of females occurred in fibromyalgia (86%) and polymyalgia rheumatic (94%).



Conclusions

In the end 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 invisiible to all but those who suffer from it.

[fright]View attachment 882 [/fright]FM, however, produces more intense symptoms that any other rheumatological 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 rheumatological 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 is CNS 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 rheumatological 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.

[fleft]View attachment 883 [/fleft]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 could 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 it's 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.

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[fibroite]

I'm getting more confused about what is & what is not. The study on FMS being a different disease than CFC/ME said that the pain for FMS was much higher! Then I listen to the podcast from the rheumatologist at Cleveland clinic saying basically that narcotic pain medication didn't work for people with FMS and once again was insulted by how they consider it you narcotic pain meds you come from a lower economic level are not as educated don't try to go to work etc. which is the same thing done to us over over we just like the meds! Well I tell you what I hate the meds I only take one low dose ER pain med which is a generic & cost me a fortune since the big deal with the DEA & the pharmacist over ridding the dr's it's a nightmare. I am not getting high I am going broke I did not quit my job I was told I couldn't keep up so I'm job that I loved was gone my SSDI pays 1/3 of what I was making I had Heath insurance & now I've got a Medicare advantage plan that has put
my genetics meds in the 3 Rd tier so $47 co pay + a new $270 deductible is costing me a fortune for the so called save money use genetics MOTTO! I missed my last appt with my pain Dr so could not get my refill had to go from 3-2-1 per day I was already having withdrawals symptoms the day of my appt so my dr said since you have already reduced the dosage do you want to me lower the dosage on your Rx? I said yes so now I take the lowest dosage & nothing for break through pain & I am having increased pain more not sleeping issues but it's worth it to get out of this being treated like an addict & BTW I am randomly drug tested so they & the patients are doing everything by the book but still classified as act classified drug addicts! It makes me crazy to be put in that classification due to a disease I didn't want, that had zero info in area & still is a mystery with no funding! I don't want to be insensitive to CF/ME victims but lately all I see is only for CF/ME with no fibromyalgia mentioned I feel like the last kid picked for a game in grammar school.'

 

[Merida]

Fibroite,
So sorry to hear of your dilemma. This expense of meds is ridiculous, especially for disabled people. Terrible situation.

I attended the Reno (2009?) international CFS/ME conference and talked to a lot of people. Virtually everyone had pain of some degree. I had 13 or 14 tender points at one time, but now only have 2 or 3. Does that mean I no longer have FM? The problem is in the diagnostic criteria. When the central nervous system is impacted in some way ( viral, injury, scoliosis, immune issues, and ????) any kind of symptom is possible. I have an article called " Myelopathy, but normal MRI: Where next?"!in Practical Neurology by SH Wong. Google it, and it will come up. Well, they list about 30 or so myelopathies that are not detected on MRI. It is expensive and exhausting for doctors to check for all these things. So, virtually none of us have had this kind of work up.

 

[Emily Mercadante]

Hi Cort and everyone - every time I read about any research study or clinical trial for Fibromyalgia, my first thought is - is this one patient population or are there actual subsets of patients with varying levels of symptoms, or different predominance of certain symptoms, etc.? Are we all suffering from the same disease or is it a similar etiology but manifesting in different ways? That is my basic problem with studies on FM because if you start with too heterogeneous of a patient population it will always be very very difficult to achieve any meaningful results or endpoints with treatments. It also makes understanding the possible causes very difficult.

Recently I saw some new studies suggesting that FM is actually a disease involving neuroinflammation and that there are increased levels of inflammatory cytokines in patients. Interesting, because typically FM is thought not to be an inflammation-based disease. I think a lot has to be done via basic research in the area of pain and how the brain and body sense, interpret, and respond to pain. This is really lacking. I'm an FM patient myself for 15 years and currently working on my PhD in Immunology, so I see on a daily basis how difficult it can be to move forward with biomedical research, the red tape of funding, and the hurdles to actually publishing meaningful work. I think that one of the benefits of these studies, even if they are all over the place in terms of how they categorize FM, is that at least there are some objective findings being discovered that can potentially be utilized as biomarkers specific to FM and possibly help identify a clear-cut more homogenous patient population for studies and trials.

 

[Merida]

Thank you Emily. Great post.