Hi. Does anyone on here who has small fiber neuropathy find that their symptoms sometimes go away for days, or even weeks at a time, and then come back roaring back for several days or a few weeks? Or maybe when they come back, they flare for several days and then relent for a few days, then crank back up again? I can't figure it out. I had a period of about 2 and a half or three months this spring where I had virtually no symptoms. Actually thought my nerves might be regenerating. But ever since early July it's been battering me with a few days off every now and then. Just wondering if anyone else has had a pattern maybe similar to this.

Thanks.

What are you symptoms? When did they start. Do you know what caused your SFN?

I would take that (absensce of any/all symptoms) as a very encouraging sign. It sounds to me more like an impingement (cuz I've had some that have behaved that way).

I'll second Bent's queries, and ask what the dx of sfn is based upon?

Doc

Thanks for the replies to my post.

The basis for the diagnosis was a skin biopsy. The current diagnosis is idiopathic small fiber neuropathy. There are several areas that look suspicious as a potential causal factors and I'll get into them below, in no particular order. Before I get into that, my neurologist ordered a great deal of bloodwork that was pretty comprehensive in terms of potential causes, and included in this were the various B vitamin readings among numerous other things. Here are what I believe are the three leading areas of suspicion, again in no particular order.

1. Blood Sugar history: for years, my fasting glucose has bounced back and forth between high normal (90s) to pre-diabetic (between 100-110 and with a peak of 118). My most recent was 109. My A1Cs have been always normal (usually around a 5.4)

2. Alcohol - Drank excessively from mid the mid 90s to a couple of years ago when i cut back to moderate, weekend only drinking. Then, in an effort to see if I could improve the small fiber neuropathy, a little over 7 months ago I quit entirely. I have not had a drink since early January of this year.

3. Autoimmune - This area seems to have possibly moved up the list of suspects, but heck, I don't know. I have consistently had "moderately positive" ANAs since the docs started checking that two years ago. All subsequent follow-up tests, the more specific ones, have come back negative. However, in late April/early May, an MRI of my spine inadvertently led to the discovery of small amounts of fluid around my lungs and heart, i.e., pleural and pericardial effusions. I had also been experiencing some muscle/joint stiffness prior to this discovery (although my small fiber neuropathy symptoms had seemed to have gone into hiding at that time!). The discovery of these small effusions led me to being sent to a rheumatologist on the basis that something systemic might well be going on. Bunch of blood work done, again a moderate positive ana but the more specific antibody tests negative. Also, the rheumatologist said she saw something under one of my fingernails with the capillaries that is often present in people with autoimmune disorders. Was put on a trial of plaquenil starting a little more than a month ago.

Bottom line, I think those three areas I described above, and I realize that those areas are pretty broad, all have some basis for being considered the causal factor. I used to in my mind bounce back and forth between the blood sugar and alcohol as the leading two candidates. But with the recent developments in the autoimmune area, I'm certainly not so sure about 1 and 2 anymore.

My sfn symptoms historically seem to come and go. As I said in my original post I have had many weeks at a time where there are virtually none and then they come on with some fury and might last a few days/weeks, and then go back and forth. My symptoms include usually burning feet and bladder issues. But sometimes also include dry eyes and bloating.

So, that's kind of my history. I'm currently under the care of a neurologist and rheumatologist.

I sure wish I could get to the bottom of what's going on in an effort to treat this better, if possible. Anyone on here have any thoughts based on what I've said as to what they think might be going on with me?

Thanks in advance for any helpful observations/suggestions!

Do you eat a diet without sugar and simple carbs?

Given the (amount of) testing you've already gone through, and your doctors' apparent willingness to help you zero in on the cause(s), I think you might (if it hasn't been mentioned) benefit from Liza Jane's Charts.

Also (if not previously known/mentioned), it IS common for many of us to experience flares and abatement of some symptoms, flares being brought on by triggers/trigger events -- abatements by... doing something right. This can be helpful in providing clues for both diagnosis and treatment.

Keeping a journal can help in discovering/finding catalysts (for bad and/or good).

Doc

Have you had a Autonomic Function Test? I am scheduled for one, but I do not know if it will zero in on anything.

I wish I had further insight for you but it is interesting your A1Cs are very good but your fasting glucose has bounced around. Interestingly, my A1Cs are at 5.5, but I have never done a fasting. I have read they are more sensitive than a normal A1C. How many fasting tests did you do to get those results?

I have had probably around 12-15 fasting tests or so over the last 4-5 years. Results usually range from 90s to the one hundred and teens.

I once had an autonomic function test done at Mayo at Florida and it was for the most part normal. However, I clearly have some autonomic neuropathy with these "flares" in that I have bladder issues, dry eyes, and sometimes some delayed gastric emptying. Basically, I have small fiber neuropathy with autonomic involvement and all of this has historically presented itsself in what I describe as flares. I just wish I could get these flares to lessen in their frequency and duration.

Are you on anything to help manage the pain?

Hi, i have it, and yes, moments of peace then moments of sheer hell, what ever it is doing it is having no end of fun making my life hell. good luck