I'm sorry that no one around you "gets" the way you are feeling. It is really weird to feel soooo bad but look so normal. That can be really tough on your mind. I can't remember if you are able to work or not and what your pain ratings are. I presume you can't work and your pain ratings are in the 7-10 range. I have tinnitus as well as SNF pathology also. I have never thought that the tinnitus was connected to my SNFP. I've always attributed it to the days when I was much younger and played in a rock band. Have you done anything which would cause damage to your ears? They say that even something like being a truck driver and driving with your window down over time can cause tinnitus.

I tend to "try" and read professional journals in order to understand SFNP and every couple of years I catch up with the most recent literature. One of the biggest apparent causes has to do with abnormal glucose regulation, even in the pre diabetes stages which I recall you having. There are numerous mechanisms in diabetes that cause all kinds of problems - retinopathy, impaired autonomic function (gastrointestinal function, urinary frequency, cardiac, hypotension, diffuse damage to unmyelinated and lightly myelinated nerve fibers, inflammation in the upregulation of pro inflammatory cytokines, etc) and the mechanisms underlying pre diabetes/diabetes are a lot more complex than just "needing to control blood sugar" and seem to mimic autoimmune disorders.

<Christopher H Gibbons, MD, MMSc and Roy Freeman, MD (2010) Treatment induced diabetic neuropathy– a reversible painful autonomic neuropathy. Ann Neurol. 2010 April ; 67(4): 534–541.>

Spoiler alert: The study mentioned is paradoxical in that pain developed as blood sugars were controlled.

The folks in the study above report 10/10 pain levels that are not helped by medications. Many were on methadone. They report that one side effect of getting blood sugar under good control for some people (a minority for sure) can get intense SFN pain confirmed by skin biopsy. The pain got better an average of 18 months after it began. And, as I recall, nerve fibre damage showed improved growth.

Just throwing this second point in because it is interesting. It is becoming clear that SFNP is present in a significant number of people with fibromyalgia as shown by two 2013 studies. The major finding of the Oaklander study, below, was that they found that 41% of skin biopsies from subjects with fibromyalgia vs 3% of biopsies from control subjects were diagnostic for SFPN.

<Anne Louise Oaklander, Zeva Daniela Herzog, Heather M. Downs, & Max M. Klein (2013) Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia . PAIN 154, 2310–2316.>

<Nurcan Üçeyler, Daniel Zeller, Ann-Kathrin Kahn, Susanne Kewenig, Sarah Kittel-Schneider, Annina Schmid, Jordi Casanova-Molla, Karlheinz Reiners and Claudia Sommer. (3013) Small fibre pathology in patients with fibromyalgia syndrome. Brain>

While this seems to be off topic, I guess I'm trying to say "hang in there" and that the area of SFN is the subject of ongoing research and the research is getting more sophisticated all the time. I think the growing awareness of skin punch biopsy technologies has really stimulated research in this area. This problem is definitely on the radar, so be hopeful. Secondly, given the close relation of pre-diabetes and diabetes to the disorder please focus on those things you can do to help in this area: diet and, importantly, gentle exercise.

In my case of SFN pathology, I didn't get much out of gabapentin, pregablin, or lyrics and have stopped those. I currently take cymbalta to help with diffuse pain and depression and a sleeping pill at night. Unfortunately, for pain control I have had to move to time-release morphine. A side effect of morphine and whatever SFN and other health things that that I have is extreme fatigue and tiredness. In conjunction with my psychiatrist I have started taking adderall (amphetamine) and this seeming dangerous combination of morphine and speed has really, really, really helped me and given me both pain relief and hope for the future.

I (kind of) know what you are going through Marie, and want you to know that I and other SFN survivors are here and we are willing to do what we can to give you strength. Each of us, in our own way, understands exactly what you are going through and for most of us, it has been The challenge of our lives.

With Love,

Mike