Author Topic: Small fiber polyneuropathy may underlie fibromyalgia, chronic fatigue, IBS  (Read 1114 times)

Offline Mr. Bill

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Interesting research about a possible underlying cause for several poorly-defined collections of symptoms (fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, and irritable bowel syndrome):

Small Nerves – Big, Big Problem? Drug Trial Points Finger at Autoimmunity in Fibromyalgia and ME/CFS

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...When small nerve fibers are damaged, you have small fiber polyneuropathy (SFPN). In contrast to the small nerve neuropathy found in the skin, SFPN affects peripheral nerves across the body causing potentially a staggering array of symptoms from pain to tachycardia, orthostatic intolerance (problems standing), headache, exercise intolerance (due to circulatory insufficiency), gut issues, cognitive problems and more.

That large array of potential symptoms suggests SFPN could be causing every ME/CFS and FM symptom in the book. ...

[SFPN researcher Dr. Anne Oaklander says:] “This is not just some rare, esoteric disease that Harvard eggheads are investigating. It is common. People—including kids and teens—are sick, but they don’t know what they have and their doctors don’t know, either.”

SFPN is usually diagnosed via a small skin biopsy – a truly objective test – that many doctors probably don’t know about. Other tests can pick it up – a corneal microscopy test can, for instance, non-invasively and quickly determine if issues with the small nerve fibers in the eye exist. The Sudoscan sweat gland test, questionnaires and others may be helpful as well.

The field is new enough that the diagnostic protocols for some of these tests are being forged as we speak. Dr. Oaklander is assessing the efficacy of all of these tests in a large 5-year, NIH funded study.

Oaklander has been thinking about treating these small nerve fiber problems for quite some time. In her 2015 paper “Immunotherapy Prospects for Painful Small-fiber Sensory Neuropathies and Ganglionopathies” she proposed that the vast interplay between the small nerve fibers and the immune system suggest that immunotherapies will probably work better than opioid drugs.

...treatment with intravenous immunoglobulin (IVIG; 2 grams/kilogram every four weeks) provided symptom relief and improved nerve function for 75% of patients. ...

It’s important to note that Oaklander’s study was a proof of concept study, not a phase III trial.  A proof of concept study is the first step to a Phase III trial. It demonstrates that a treatment might be effective and appears to be safe.  A randomized, controlled trial is hopefully next.

The downside of IVIG is that it is extremely expensive ($10,000/month) and hard to get insurance companies to pay for. Dr. Oaklander is reportedly exploring less expensive and easier to manage immunotherapies. ...

Offline PorcupineKate

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Re: Small fiber polyneuropathy may underlie fibromyalgia, chronic fatigue, IBS
« Reply #1 on: December 20, 2017, 11:26:18 AM »
Interesting. 

Many of these symptoms are comorbidity problems for people with connective tissue disorders like Ehlers-Danlos Syndrome.    I am currently working my way up the chain of specialty neurologists to try and deal with these symptoms.  They are very difficult to treat and have brought my life to a grinding halt. 

Offline Mr. Bill

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Re: Small fiber polyneuropathy may underlie fibromyalgia, chronic fatigue, IBS
« Reply #2 on: December 20, 2017, 11:28:23 AM »
Sorry to hear you have to deal with this.  I know too many people who have these sorts of issues.  Hoping for some progress on treatment ASAP.

Offline PorcupineKate

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Re: Small fiber polyneuropathy may underlie fibromyalgia, chronic fatigue, IBS
« Reply #3 on: December 20, 2017, 11:39:31 AM »
Thanks,  I am hoping for relief too.  Sadly these symptoms can be very life threatening if the symptoms start causing your autonomic nervous system to not function properly.  My sister has idiopathic heart failure, gastroparesis, and she randomly stops breathing along on top of the symptoms mentioned in the article.  Scary stuff for a 42 year old mom with 2 teenage boys.