Many Fibromyalgia Patients Have Small-Fiber Polyneuropathy

[alice]

This may be of interest to those of us diagnosed with fibromyalgia. This was my first diagnosis - later joined by CFS and Lyme Disease.

http://www.medscape.com/viewarticle/772864?src=nl_topic

 

[*GG*]

Oh, that's where I got this from. I just received a call from them today, didn't get a chance to return it. Interesting how this was published today,and I received a call!

Wonder what the treatment options are?

GG

 

[*GG*]

BOSTON — In a small study of patients labeled as having fibromyalgia, almost half actually had small-fiber polyneuropathy (SFPN), a potentially treatable condition.

Therefore, it is important that patients considered to have fibromyalgia be tested for SFPN, Anne Louise Oaklander, MD, PhD, associate in neurology at Massachusetts General Hospital and associate professor of neurology at Harvard Medical School in Boston, and colleagues reported here at the American Neurological Association (ANA) 137th Annual Meeting.

"Fibromyalgia is such a common and expensive health care problem and although most people are aware of its existence now, it has no associated pathology with it," she explained. "So it's not a diagnosis in the true sense of the word, and that leaves patients frustrated and unable to gain real traction towards a cure."

Dr. Oaklander noted that despite an emphasis on central mechanisms as the cause of fibromyalgia, these findings suggest that a specific — and sometimes treatable — type of peripheral neuropathy is a common cause of the condition.

"This is exciting for us because it's the beginning of objective data on what the actual cause of patients' symptoms may be," she said.

Widespread Chronic Pain
The condition is a syndrome with prominent widespread chronic pain. Thus, her laboratory tested the hypothesis that some patients with fibromyalgia may have SFPN, which "produces widespread chronic pain and very similar symptoms. The difference though is that small-fiber polyneuropathy is a true disease, meaning that there are objective tests for it, known causes, and the possibility of disease-modifying treatments and cure," Dr. Oaklander told Medscape Medical News.

The investigators recruited 25 patients 18 years of age or older from the community who met the best available clinical and research definition of fibromyalgia (mean age, 46.5 years), as well as 29 control participants (mean age, 44.8 years). The groups were well matched for demographic characteristics, including sex (76% to 79% women).

The researchers applied consensus-recommended diagnostic tests for SFPN, including standard diagnostic autonomic function testing, an early neuropathy scale, and PGP9.5 immunohistochemical staining of a 3-mm skin punch biopsy specimen from the distal portion of the leg. PGP9.5 is a pan-axonal marker.

The diagnostic test results and markers were analyzed in a blinded fashion. Intraepidermal nerve fiber (IENF) densities were normalized to control values expected for age and sex.
"The diagnostic criterion, universally accepted around the world, is that someone whose nerve fiber density in their biopsy is below the fifth centile of predicted value is considered to have definite small-fiber polyneuropathy," Dr. Oaklander said.

"The major finding of our study is that half of the cohort of fibromyalgia patients but none of an age-matched control group had evidence of nerve loss. And so to neurologists this meets the diagnostic criteria for small-fiber polyneuropathy."

For the various tests overall, 46% of the patients with fibromyalgia and 17% of controls (P < .001) met the rigorous criteria for SFPN.

More specifically, 40% of the patients with fibromyalgia met the SFPN diagnostic criteria upon IENF staining. Their IENF densities averaged 28% ± 6% of the predicted norm vs 47% ± 6% for controls (P< .02).


Interestingly, there was no overall difference between patients with fibromyalgia and controls on autonomic function testing. Among the fibromyalgia cohort, 17% met diagnostic criteria for SFPN on autonomic testing vs 15% of controls (P = .67).

Link to Diabetes (cont'd)

 

[Timaca]

Thanks for posting this. I will be seeing a neurologist next week. I have printed the article out for him if he's interested. I don't have FM, but I do have nerve pain and other neurological issues.

Best, Timaca

 

[alex3619]

Half of all CFS patients also have this. I do not know what the prevalence is in strictly defined ME patients though. Many of us have treated it successfully.

The real question is whether or not the fibro symptoms go away when the small fibre neuropathy (which is what I called it last time I posted on this) is successfully treated. Based on the CFS experience, I would say it alleviates some symptoms but does not remove the fibro. Hopefully some will get full recovery though. We have to wait for proper clinical trials to know this for sure.

Bye, Alex

 

[beaker]

Half of all CFS patients also have this. I do not know what the prevalence is in strictly defined ME patients though. Many of us have treated it successfully.

The real question is whether or not the fibro symptoms go away when the small fibre neuropathy (which is what I called it last time I posted on this) is successfully treated. Based on the CFS experience, I would say it alleviates some symptoms but does not remove the fibro. Hopefully some will get full recovery though. We have to wait for proper clinical trials to know this for sure.

Bye, Alex

what treatment are you referring to ? curious.
from what I have read it is only symptomatic treatment and is pretty much the same stuff used already for both FM and CFS/ME symptoms of same. do you know of something different ?

thanks!

 

[Marco]

Go into Google and type small fiber polyneuropathy and the second listing should be a very interesting .pdf file from the US Department of Veteran Affairs

(Can't post a direct link unfortunately).

 

[JT1024]

Is this the link you are referring to? I
http://www.va.gov/RAC-GWVI/docs/Minutes_and_Agendas/Minutes_Feb2011_AppendixA_Presentation06.pdf

 

[Marco]

Is this the link you are referring to? I
http://www.va.gov/RAC-GWVI/docs/Minutes_and_Agendas/Minutes_Feb2011_AppendixA_Presentation06.pdf

No JT - this one (found out how to copy the url) :

www.va.gov/.../Minutes_Nov2010_AppendixA_Presentation8.pdf

What interested me (apart from neuropathies being common in diabetes which is another story) is the fact that I have some peripheral neuropathies and the list of common symptoms also includes :

Unexplained chronic pain – muscle, joint, headaches

Skin complaints (rashes, hair loss)

Cardiovascular symptoms (dizziness, palpitations, fainting)

Gastrointestinal symptoms

Poor sleep and chronic fatigue

Small fibre polyneuropathy can also cause heat intolerance which is something that bothers me a lot.

 

[alex3619]

Small fibre neuropathy responds to alpha lipoic acid, and this often results in full remission of symptoms. Whether or not this results in full repair of nerves is unknown. Here is a thread I started on this for ME and CFS:

http://forums.phoenixrising.me/index.php?threads/small-fiber-neuropathy-in-cfs.6743/#post-137638

Run a search on "small fiber neuropathy" here, and you will get a lot of links.

Bye, Alex

 

[jimells]

For the various tests overall, 46% of the patients with fibromyalgia and 17% of controls (P < .001) met the rigorous criteria for SFPN.

There's something here I'm not comprehending. The controls don't have SFPN, but almost a fifth meet the 'rigorous criteria'? That doesn't seem very rigorous to me...

 

[maryb]

Very interesting for those of us with FM.
Don't forget alpha lipoic acid is contraindicated if you have amalgam fillings,
but I am determined to try it if I ever get rid of the last 2 fillings I have.

 

[*GG*]

Very interesting for those of us with FM.
Don't forget alpha lipoic acid is contraindicated if you have amalgam fillings,
but I am determined to try it if I ever get rid of the last 2 fillings I have.

Huh, did not know that. I had the few fillings I had removed a few years ago, a few at a time.

GG

 

[biophile]

For the various tests overall, 46% of the patients with fibromyalgia and 17% of controls (P < .001) met the rigorous criteria for SFPN.

There's something here I'm not comprehending. The controls don't have SFPN, but almost a fifth meet the 'rigorous criteria'? That doesn't seem very rigorous to me...

Good point.

I am about to quote a different study, but unfortunately I see no mention of the results for controls (in the abstract):

Evidence of Small-Fiber Polyneuropathy in Unexplained, Juvenile-Onset, Widespread Pain Syndromes.

(selected extracts from the abstract only)

"Forty-one consecutive patients evaluated for unexplained widespread pain beginning before age 21 had medical records comprehensively analyzed regarding objective diagnostic testing for SFPN (neurodiagnostic skin biopsy, nerve biopsy, and autonomic function testing), plus histories, symptoms, signs, other tests, and treatments. Healthy, demographically matched volunteers provided normal controls for SFPN tests."

"Ninety-eight percent of patients had other somatic complaints consistent with SFPN dysautonomia (90% cardiovascular, 82% gastrointestinal, and 34% urologic), 83% reported chronic fatigue, and 63% had chronic headache. Neurologic examinations identified reduced sensation in 68% and vasomotor abnormalities in 55%, including 23% with erythromelalgia."

"Exhaustive investigations for SFPN causality identified only history of autoimmune illnesses in 33% and serologic markers of disordered immunity in 89%. Treatment with corticosteroids and/or intravenous immune globulin objectively and subjectively benefited 80% of patients (12/15)."

"More than half among a large series of patients with childhood-onset, unexplained chronic widespread pain met rigorous, multitest, diagnostic criteria for SFPN, which extends the age range of acquired SFPN into early childhood. Some cases appeared immune-mediated and improved with immunomodulatory therapies."

"Only 1 of 41 had entirely normal SFPN test results."

http://www.ncbi.nlm.nih.gov/pubmed/23478869

 

[SickOfSickness]

Thanks for this.

I agree with the article, the last part on autonomic testing is interesting.

 

[PhoenixDown]

I can't search very well at the moment, but came across this: http://brain.oxfordjournals.org/content/early/2013/05/31/brain.awt115.short which is a response to a 2013 Small Fibre Neuropathy paper, and it's stating that it's technically Small Fibro Pathology.

 

[Ecoclimber]

There is a link to great article explaining Oaklander research.
http://www.cortjohnson.org/blog/201...haps-chronic-fatigue-syndrome-may-be-at-hand/

Eco

 

[alex3619]

what treatment are you referring to ? curious.
from what I have read it is only symptomatic treatment and is pretty much the same stuff used already for both FM and CFS/ME symptoms of same. do you know of something different ?

thanks!

There are a bunch of threads on this, and I started one of them. The number one treatment is lipoic acid, antioxidants and other things may help. Seach the threads and you will learn a lot. You might like to use Google though, or some other engine, rather than the onsite engine.

 

[JT1024]

I was not aware of a problem with Alpha-Lipoic Acid and amalgam fillings.

At some point I took the ALA and forget now why I was taking it. I have quite a few amalgam fillings that I'm in the process of having removed. So many things needed and the cost of everything keeps adding up.

I'm pretty close to the worst I've ever been. Sadly, I just got out of work an hour ago. Not good. I'll be checking into the ALA and amalgam contraindication.

Thanks for mentioning it!

 

[roxie60]

Very interesting for those of us with FM.
Don't forget alpha lipoic acid is contraindicated if you have amalgam fillings,
but I am determined to try it if I ever get rid of the last 2 fillings I have.

I was not aware of this. Is there a link to a reference on this ? I had added ALA to my protocol last year, I declined again but I could not determine why. I have now backed off many supps and only take the bare minimum.