If you have Fibromyalgia, CFS, or similar illnesses, here are a couple bits of potentially VERY interesting information.

You might have something called Small-Fiber Polyneuropathy.

Studies show that nearly half of people with Fibromyalgia test positive for a condition named Small Fiber Polyneuropathy (SFPN).

This is an illness caused by damage to small fiber nerve cells in the skin, and quite likely internally as well. SFPN is diagnosed with a skin biopsy (a fairly non-invasive 3mm skin punch taken from 3-4 points on your body).



About half of SFPN cases can be attributed to specific illnesses like diabetes, cancer, infections, and autoimmune illnesses (Sjögren, Celiac, Lupus). So if you test positive for SFPN, you can then be screened for a list of causative underlying conditions, and treated appropriately.

The other half of SFPN is idiopathic (which is the medical term for “we dunno what causes it”).

Idiopathic Small-Fiber Polyneuropathy appears to be treatable.

Dr. Oaklander Anne Louise Oaklander, director of the Nerve Unit in the MGH Department of Neurology, performed a retrospective study examining the medical records of 55 patients treated at Massachusetts General Hospital for autoimmune small-fiber polyneuropathy, with encouraging findings.

The study showed that treatment with intravenous immunoglobulin (IVIG) provided symptom relief and improved nerve function for 74% of of the 51 patients treated.

8 patients improved enough to able to discontinue all treatment. (4 couldn’t complete the treatment).

There have been a number of false starts when it comes to the diagnosis and treatment of ME/CFS and Fibromyalgia, so it’s important to be guarded in our optimism. It’s possible that these studies are flawed or too small. It’s possible that SFPN itself just a symptom and not necessarily causative of the rest of our symptoms. Even if it’s effective, IVig is expensive and hard to get covered by insurance.

Still, this seems like a big deal. It’s another indicator that ME/CFS/Fibro is autoimmune in nature and if the promise of this information is real, a significant subset of chronically ill people can have a dramatic improvement in their quality of life.

References

Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia

https://www.ncbi.nlm.nih.gov/pubmed/23748113

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

http://www.prohealth.com/library/showarticle.cfm?libid=31103

Her Chronic Pain Was a Medical Mystery. Was It an Unexplained Condition?

https://www.thedailybeast.com/her-chronic-pain-was-a-medical-mystery-was-it-an-unexplained-condition

Autoimmunity may underlie newly discovered painful nerve-damage disorder

http://www.massgeneral.org/about/pressrelease.aspx?id=2172