Fibromyalgia: A Very Different Disease

What diseases do you think ME/CFS/FM is most like? ((Give top three answers)

  • Central nervous system autoimmune disorders such as multiple sclerosis

    Votes: 51 83.6%
  • Neurological disorders such as migraine and cluster headache

    Votes: 21 34.4%
  • Functional disorders like IBS, TMJ and interstitial cystitis

    Votes: 8 13.1%
  • Neurological Disorders affecting movement such as Parkinson's and Tourette's Syndrome

    Votes: 11 18.0%
  • Autoimmune disorders such as lupus and rheumatoid arthritis

    Votes: 24 39.3%
  • Mood disorders such as anxiety and depression

    Votes: 2 3.3%
  • Cardiovascular disorders such as heart disease, diabetes and peripheral artery disease

    Votes: 1 1.6%
  • Autonomic nervous system disorders such as orthostatic intolerance and POTS

    Votes: 36 59.0%
  • Endocrine disorders such as Addison's disease, thyroid and Cushing's disease

    Votes: 14 23.0%

  • Total voters
    61

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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]
_Woman-Back-Pain-371653.jpg
[/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%).

The Fibromyalgia Quadefecta

Pain - Location….Everywhere

[fleft]
Pain-young-women.jpg
[/fleft]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 rheumatological 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

[fleft]
Stop-pain.jpg
[/fleft]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 "who's 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 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]
Different-groups.jpg
[/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]
-Puzzle-Pieces-And-Question.jpg
[/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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Cort; what if the people who suspect the trigger to be (undiagnosed) infection or poisoning, are correct? I still entertain the suspicion that this kind of initial cause, sets off a genuine defensive response on the part of the body's musculo-vascular/lymphatic system. If the muscles could be supplied with adequate oxygenated blood when demands are placed on them, perhaps the presence of toxins in the blood would damage the muscles, hence the supply vessels constrict, and the muscles then go into early anaerobic/hypoxic state normally associated with excessive anaerobic demand.

However, there is the question of tight myofascia to consider - is this another consequence of what I am hypothesizing, or is it another potential "cause" of the muscles being deprived? I certainly believe there is a "vicious circle" effect.

I believe that during the 20+ years I have had FM, I never had as bad pain sensations as the sufferers in this study. I can relate to all the descriptions of the pain - it is "all over", it is like finely ground glass in the muscle tissue, the myofascia in places feels like someone is giving me a "Chinese Burn". But 8 out of 10? Compared to what? Being burned by direct flame, multiple bones being broken in a car crash, or an attack of intestinal colic? Given that those would represent "10 out of 10", I would like to investigate whether the FM sufferers and those suffering the other conditions, were applying similar mental scales of perceived pain.

Nevertheless, even if it would be more accurate to say FM pain is "as bad as" the others rather than twice as bad, the fact that it is "all over" and "chronic" still makes it the most debilitating kind of condition. I am with everyone on that.

I would estimate that the improvement I have had over the last 2 - 3 years (which I have been posting about often) is around a 70% reduction from the peak chronic pain. I do wonder whether even during the whole 20+ years I have had FM, I have been doing some things right, and never got pain levels increased to the levels experienced by those in this study. I did get episodes of greater pain in some muscles following unwise over-use, which I would definitely say is an FM consequence, not just "normal person" muscle over-use.

I also wonder whether there is any similarity between FM sufferers prone-ness to pain build-up, and that of everyone who succumbs to OOS. I have often heard people criticising someone with OOS in some part of their body, because "I do the same work and I don't end up in pain, therefore they are just making it up". Why are some people "prone" to developing problems with pain and others seem "immune"?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort; what if the people who suspect the trigger to be (undiagnosed) infection or poisoning, are correct? I still entertain the suspicion that this kind of initial cause, sets off a genuine defensive response on the part of the body's musculo-vascular/lymphatic system. If the muscles could be supplied with adequate oxygenated blood when demands are placed on them, perhaps the presence of toxins in the blood would damage the muscles, hence the supply vessels constrict, and the muscles then go into early anaerobic/hypoxic state normally associated with excessive anaerobic demand.

However, there is the question of tight myofascia to consider - is this another consequence of what I am hypothesizing, or is it another potential "cause" of the muscles being deprived? I certainly believe there is a "vicious circle" effect.

I believe that during the 20+ years I have had FM, I never had as bad pain sensations as the sufferers in this study. I can relate to all the descriptions of the pain - it is "all over", it is like finely ground glass in the muscle tissue, the myofascia in places feels like someone is giving me a "Chinese Burn". But 8 out of 10? Compared to what? Being burned by direct flame, multiple bones being broken in a car crash, or an attack of intestinal colic? Given that those would represent "10 out of 10", I would like to investigate whether the FM sufferers and those suffering the other conditions, were applying similar mental scales of perceived pain.

Nevertheless, even if it would be more accurate to say FM pain is "as bad as" the others rather than twice as bad, the fact that it is "all over" and "chronic" still makes it the most debilitating kind of condition. I am with everyone on that.

I would estimate that the improvement I have had over the last 2 - 3 years (which I have been posting about often) is around a 70% reduction from the peak chronic pain. I do wonder whether even during the whole 20+ years I have had FM, I have been doing some things right, and never got pain levels increased to the levels experienced by those in this study. I did get episodes of greater pain in some muscles following unwise over-use, which I would definitely say is an FM consequence, not just "normal person" muscle over-use.

I also wonder whether there is any similarity between FM sufferers prone-ness to pain build-up, and that of everyone who succumbs to OOS. I have often heard people criticising someone with OOS in some part of their body, because "I do the same work and I don't end up in pain, therefore they are just making it up". Why are some people "prone" to developing problems with pain and others seem "immune"?
I was a bit surprised at the pain levels as well. Maybe the FM patients going to the hospital are the worse off (???).

They're fatigue levels were even higher. I've met the criteria for FM once and I don't think I did again; my pain and fatigue levels are about 5-6.....

Yes- the Chinese burn!

"It is like finely ground glass in the muscle tissue, the myofascia in places feels like someone is giving me a "Chinese Burn".

and yes, on the vicious circle and the lack of oxygenation in the muscles; intuitively it feels like that's on the right track. I wish there was more research on the myofascia. Again, intuitively, it seems like that's a core element.
 

Steve

Active Member
I think the subjective pain levels and descriptions posted by all of us when Cort asked probably show the nasty intensity and variety of FM pain better than that study. During the last several years, as mine has worsened, at times I've wondered how I will make it through the pain and pondered my hidden bottle of phenobarbital. When I applied for term life insurance several years ago through a very huge insurance company database online, only one company offered me insurance, which shocked me as my only diagnosis is FM and I have no history of psychological or physical problems and no genetically linked family diseases. It made me wonder how many FM folks check out early, though I haven't seen that statistic anywhere. BTW, am still using the Avocen 100, will report on other thread when my trial is over.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think the subjective pain levels and descriptions posted by all of us when Cort asked probably show the nasty intensity and variety of FM pain better than that study. During the last several years, as mine has worsened, at times I've wondered how I will make it through the pain and pondered my hidden bottle of phenobarbital. When I applied for term life insurance several years ago through a very huge insurance company database online, only one company offered me insurance, which shocked me as my only diagnosis is FM and I have no history of psychological or physical problems and no genetically linked family diseases. It made me wonder how many FM folks check out early, though I haven't seen that statistic anywhere. BTW, am still using the Avocen 100, will report on other thread when my trial is over.
Thanks Steve. I know my pain is mild compared to most people with FM. Thank god I don't have allodynia as well. I don't know if there's ever been a mortality study in FM..I am checking it out. bnnfvgfret546

Here's something hopeful - how about premature aging? :couchpotato:

Mounting evidence, however, suggests that some of the 116 million US adults who suffer from chronic pain are also at an increased risk for developing age-related diseases prematurely, suffering earlier cognitive and physical decline, and experiencing earlier mortality. Given the aging US population and the prevalence of chronic pain along with related healthcare consequences, there is a critical need to better understand the relationship between aging and chronic pain. Herein, we focus on one chronic pain state, fibromyalgia, and provide an overview of the evidence suggesting that individuals with this chronic pain condition show signs of premature aging.

http://www.ncbi.nlm.nih.gov/pubmed/26212052

and yes, your presupposition was correct - suicidal ideation - I guess that means ideas of suicide - are greatly increased in FM.


Suicidal ideation, measured with item 9 of the Beck Depression Inventory, was almost absent among the controls and was low among patients with low-back pain; however, suicidal ideation was prominent among patients with fibromyalgia (P<0.0001). (That's quite a significance factor!) The risk of suicide, measured with the Plutchik Suicide Risk Scale, was also higher among patients with fibromyalgia than in patients with low-back pain or in controls (P<0.0001). The likelihood for suicidal ideation and the risk of suicide were higher among patients with fibromyalgia (odds ratios of 26.9 and 48.0, respectively) than in patients with low-back pain (odds ratios 4.6 and 4.7, respectively). Depression was the only factor associated with suicidal ideation or the risk of suicide.

http://www.ncbi.nlm.nih.gov/pubmed/24790444

Early retirement is, not surprisingly, increased

Eur J Pain. 2011 Aug;15(7):741-7. doi: 10.1016/j.ejpain.2011.01.004. Epub 2011 Feb 11.The burden of symptoms predicts early retirement: a twin cohort study on fibromyalgia-associated symptoms.
Markkula R1, Kalso E, Huunan-Seppälä A, Koskenvuo M, Koskenvuo K, Leino-Arjas P, Kaprio J.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thankfully mortality is not increased in FM - if you don't commit suicide or fall prey to an accident, that is.


Arthritis Care Res (Hoboken). 2011 Jan;63(1):94-101. doi: 10.1002/acr.20301. Epub 2010 Jul 26.Mortality in fibromyalgia: a study of 8,186 patients over thirty-five years.
Wolfe F1, Hassett AL, Walitt B, Michaud K.

We studied 8,186 fibromyalgia patients seen between 1974 and 2009 in 3 settings: all fibromyalgia patients in a clinical practice, patients participating in the US National Data Bank for Rheumatic Diseases (NDB), and patients invited to participate in the NDB who refused participation. Internal controls included 10,087 patients with osteoarthritis. Deaths were determined by multiple source communication, and all patients were also screened in the US National Death Index (NDI). We calculated standardized mortality ratios (SMRs) based on age- and sex-stratified US population data, after adjustment for NDI nonresponse.
RESULTS:

There were 539 deaths, and the overall SMR was 0.90 (95% confidence interval [95% CI] 0.61-1.26). Among 1,665 clinic patients, the SMR was 0.92 (95% CI 0.81-1.05). Sensitivity analyses varying the rate of NDI nonidentification did not alter the nonassociation. Adjusted for age and sex, the hazard ratio for fibromyalgia compared with osteoarthritis was 1.05 (95% CI 0.94-1.17). The standardized mortality odds ratio (OR) compared with the US general population was increased for suicide (OR 3.31, 95% CI 2.15-5.11) and for accidental deaths (OR 1.45, 95% CI 1.02- 2.06), but not for malignancy.
CONCLUSION:

Mortality does not appear to be increased in patients diagnosed with fibromyalgia, but the risk of death from suicide and accidents was increased.
 

sue la-la

Member
premature ageing
is it possible - if the mitochondria aren't working well, the individual cells will experience premature ageing ...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
premature ageing
is it possible - if the mitochondria aren't working well, the individual cells will experience premature ageing ...
I believe you are correct; the free radicals will really mess up the cell - and shorten the telomere's. Shortened telomeres may be a sign of premature aging. They have been found in FM and ME/CFS...

I wouldn't be surprised at all if its happening. In fact I would be rather surprised if it wasn't. :stop:
 

Peyton

New Member
I am surprised by the high ranking of POTS in your poll, Cort. When I only had Fibromyalgia, I didn't experience autonomic problems. It was only after I became ill with ME/CFS that POTS entered the picture.

Would you and others please comment on having POTS along with Fibromyalgia? (It is in second place right now.) I didn't see POTS mentioned in your blog although that could just be my cognitive troubles today.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I am surprised by the high ranking of POTS in your poll, Cort. When I only had Fibromyalgia, I didn't experience autonomic problems. It was only after I became ill with ME/CFS that POTS entered the picture.

Would you and others please comment on having POTS along with Fibromyalgia? (It is in second place right now.) I didn't see POTS mentioned in your blog although that could just be my cognitive troubles today.
Interesting...Good point. I would love to hear more about this since I don't know why POTS is mostly showing up in ME/CFS patients. I wonder if it's just not being diagnosed as readily as in FM?

I almost didn't put POTS up there because it can be caused in so many different ways apparently.
 

KweenPita

Active Member
Cort; what if the people who suspect the trigger to be (undiagnosed) infection or poisoning, are correct? I still entertain the suspicion that this kind of initial cause, sets off a genuine defensive response on the part of the body's musculo-vascular/lymphatic system. If the muscles could be supplied with adequate oxygenated blood when demands are placed on them, perhaps the presence of toxins in the blood would damage the muscles, hence the supply vessels constrict, and the muscles then go into early anaerobic/hypoxic state normally associated with excessive anaerobic demand.

However, there is the question of tight myofascia to consider - is this another consequence of what I am hypothesizing, or is it another potential "cause" of the muscles being deprived? I certainly believe there is a "vicious circle" effect.

I believe that during the 20+ years I have had FM, I never had as bad pain sensations as the sufferers in this study. I can relate to all the descriptions of the pain - it is "all over", it is like finely ground glass in the muscle tissue, the myofascia in places feels like someone is giving me a "Chinese Burn". But 8 out of 10? Compared to what? Being burned by direct flame, multiple bones being broken in a car crash, or an attack of intestinal colic? Given that those would represent "10 out of 10", I would like to investigate whether the FM sufferers and those suffering the other conditions, were applying similar mental scales of perceived pain.

Nevertheless, even if it would be more accurate to say FM pain is "as bad as" the others rather than twice as bad, the fact that it is "all over" and "chronic" still makes it the most debilitating kind of condition. I am with everyone on that.

I would estimate that the improvement I have had over the last 2 - 3 years (which I have been posting about often) is around a 70% reduction from the peak chronic pain. I do wonder whether even during the whole 20+ years I have had FM, I have been doing some things right, and never got pain levels increased to the levels experienced by those in this study. I did get episodes of greater pain in some muscles following unwise over-use, which I would definitely say is an FM consequence, not just "normal person" muscle over-use.

I also wonder whether there is any similarity between FM sufferers prone-ness to pain build-up, and that of everyone who succumbs to OOS. I have often heard people criticising someone with OOS in some part of their body, because "I do the same work and I don't end up in pain, therefore they are just making it up". Why are some people "prone" to developing problems with pain and others seem "immune"?

Phil,
I have had the Chinese burn, but being from the South I call it Fire Ants crawling over me. At times I felt like my bones were raw inside. I have all the above mentioned symptoms above in article, plus and was diagnosed in 1993, after 2 years testing. As I stated many times before my symptoms presented itself first more like MS, but no lesions. So let's call it Fibromyalgia. The only test that shows "positive" on my body is inflammation of unknown origin. I have begun calling my diagnosis "the I don't know what the eff you have Syndrome". Since it's gone beyond the scope of Fibromyalgia. Up until last fall I was a 10 percenter by Cort scale of life style. I had 2 hours of frail energy a day. My Pain was enormous, some days I would pray myself in a deep meditative state and stay there with My Father, till whatever broke the trance. I often asked for death. I was not depressed, just practical, as I felt a burden to family, and of no use. My daughter would say but your mind, your love, we need that. Then I learned of the Vagus Nerve. Of Studies in Holland, Israel and other places and finally legal Cannabis. I can't believe the turn around. Cannabis banished the ants and burning hands and feet, and Vagal blocks, a lot of the others. I am a 70 %, only because I have not yet recovered enough for my energy to come back where I can cook every night, keep my house the way I like it and have bunny sex more than a few times a month, yet. The Israeli recommended Cannabis!

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.
 

KweenPita

Active Member
Interesting...Good point. I would love to hear more about this since I don't know why POTS is mostly showing up in ME/CFS patients. I wonder if it's just not being diagnosed as readily as in FM?

I almost didn't put POTS up there because it can be caused in so many different ways apparently.
Not when you consider the study about Fibromyalgia and hands a few years ago. How blood would pool in hands and not flow back. Also, the suspicion of less blood units. IF, and that's a big if the Holland study hypothesis is correct and B19 is the catalyst for Fibromyalgia. B19 does influence the marrow as in leukemia. I believe that has been proven. Since they are just discovering low blood volume, which they also hypothesis causes weak vein due to thinning to give them more pressure. Why not find out if B19 can cause blood production volume? Cort, forgot to tell you I have a didactic memory, when fog doesn't cloud, not photographic, this is burden enough for my PTSD. Just once I read I remember, and it jumps out at funny times. Thank goodness, it jumped on tests during school.
 

Kym

New Member
Cort, will you share your source for Israeli studies? I'd like to follow the studies, too. I'm surprised that they are making some effort and headway in this arena. What is driving their research and funding? Seems NIH and CDC could do at least as much.

I have Fibromyalgia, CFS and CVID (common variable immune deficiency -- a genetic blip that means my body doesn't make enough B and T cells to defend against invaders) plus hypothyroidism and migraine. It's a pretty common list with the exception of CVID. Since that diagnosis, I'm more convinced that our immune systems are a common denominator.

We have so much anecdotal experience among us. I wish this group could be a subset in studies like the one Dr. Klimas is doing to collect gene testing.

Thanks for the info.
Kym
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Not when you consider the study about Fibromyalgia and hands a few years ago. How blood would pool in hands and not flow back. Also, the suspicion of less blood units. IF, and that's a big if the Holland study hypothesis is correct and B19 is the catalyst for Fibromyalgia. B19 does influence the marrow as in leukemia. I believe that has been proven. Since they are just discovering low blood volume, which they also hypothesis causes weak vein due to thinning to give them more pressure. Why not find out if B19 can cause blood production volume? Cort, forgot to tell you I have a didactic memory, when fog doesn't cloud, not photographic, this is burden enough for my PTSD. Just once I read I remember, and it jumps out at funny times. Thank goodness, it jumped on tests during school.
Darn KweenPita - I forgot about a blog I wrote! :bag: Thanks for reminding me.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort, will you share your source for Israeli studies? I'd like to follow the studies, too. I'm surprised that they are making some effort and headway in this arena. What is driving their research and funding? Seems NIH and CDC could do at least as much.

I have Fibromyalgia, CFS and CVID (common variable immune deficiency -- a genetic blip that means my body doesn't make enough B and T cells to defend against invaders) plus hypothyroidism and migraine. It's a pretty common list with the exception of CVID. Since that diagnosis, I'm more convinced that our immune systems are a common denominator.

We have so much anecdotal experience among us. I wish this group could be a subset in studies like the one Dr. Klimas is doing to collect gene testing.

Thanks for the info.
Kym
It sounds like the immune system is big for you. I imagine that it plays a role for all of us. Here's the link to the study - http://www.ncbi.nlm.nih.gov/pubmed/26757566
 

Katie

Active Member
I have ME/CFS and FM. For about 12 years my dx was just FM but I was having most sx (symptoms) of ME so many people in studies may actually be ME patients.
I do get pain, incredibly horrific pain and I have had 3 children (labour and delivery x 3) so I know what my 10 is. I have been at a ten more than once with my disease. As a matter of fact just after Christmas I could barely move and could not walk due to the pain. I could barely breathe. I have been in so much pain over the years that there were times I just prayed for it to end-as in Lord (or whomever) take me now!
I won't go to the hospital because I can't let anyone touch me at all due to the intolerable pain.
I do get allodynia and hyperalgesia but not all the time.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have ME/CFS and FM. For about 12 years my dx was just FM but I was having most sx (symptoms) of ME so many people in studies may actually be ME patients.
I do get pain, incredibly horrific pain and I have had 3 children (labour and delivery x 3) so I know what my 10 is. I have been at a ten more than once with my disease. As a matter of fact just after Christmas I could barely move and could not walk due to the pain. I could barely breathe. I have been in so much pain over the years that there were times I just prayed for it to end-as in Lord (or whomever) take me now!
I won't go to the hospital because I can't let anyone touch me at all due to the intolerable pain.
I do get allodynia and hyperalgesia but not all the time.
My gosh Katie I've never (thankfully) come close to what you're experiencing.

Have you tried medical marijuana or LDN?
 

Katie

Active Member
My gosh Katie I've never (thankfully) come close to what you're experiencing.

Have you tried medical marijuana or LDN?
Yup, I take cesamet (cannibinoid) but don't want to smoke anything. Tried LDN and my symptoms got extreme-one of the times I experienced astronomical pain. (how's that for a new descriptor?)
My pain has settled now to a dull roar. My gorgeous companion, Bailey-my 12 year old collie/retriever mix who 99.9% of the time is calm and listens until somebody comes to the door he doesn't know, then he turns into Kujo. A new neighbour came over to say Merry Christmas, Bailey got to the door so fast I didn't have time to shove him in my office-he's taller than me when upright-which he was as he sent me flying on my ass-ouch. One week later (it takes me a few days + for my symptoms to get worse) I was contemplating wearing adult diapers because the last time I was in such pain I couldn't even lift my butt, or roll my butt off the bed to go on a slipper bedpan.
After spending a couple months in Thailand I learned to hover over their hole-in-the-floor toilets so I managed to do that for a couple of days until the pain settled. (sorry for the imagery, but it helps show the level of the pain intensity)
I've recently tried increasing my cymbalta, which has worked really well for my pain but I get such horrifying nightmares (PTSD) I can't take it-I get afraid to sleep so I'm back down to 30 mg.
Nobody has seen me in this degree of pain except for my husband. It's very difficult to explain to a doctor. Don't know how much I'm believed.
A few years ago a woman went to our local hospital in severe pain-she later told her story on the news hour. She was treated as a narcotic seeker. She was angry and embarrassed.
I did go to the same hospital once. The doctor was not well informed about chronic pain, let alone FM. He'd never heard of ME/CFS. How in the world are we to get help in an emergency? Unless I'm having a heart attack or stroke (and believe me most of us have palpitations, blurred vision, speech impediments etc. so it often feels like cardiac or stroke) I do not intend to go to the ER.
Whew, that was long-winded.
 

Steve

Active Member
Katie, I, also experienced astronomical pain (Good descriptor) with Ldn, went away right after I stopped. Have tried making thc and CBD oil from MJ for edibles but not able to get correct strains yet, not a smoker either. My pain has come down on Tramadol, with the general body pain and malaise being better but the more deep and specific pains and neuro feet are much less improved, though they have not been a pain level of 10 for a few weeks. I try every fibro potential gadget with a trial period and will report on one in a few months,
 

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