Hi all,

I experience flare ups triggered by exertion, stress or lack of sleep.

Flare ups consist of ~3 days of burning arms and legs or what can be described as an excruciating 'acid under the skin' feeling. This is followed by 2 days of very tender muscles in my arms and legs presumably as a result of the nerves being irritated or irritating my muscles. I also experience varying degrees of fatigue during my flare ups.

I have no numbness or discoloration or swelling etc... Only other remarkable thing I've noticed
is that recently when I'm in the acute 'burning' phase I get lightheaded when I stand up and my legs will shake or spasm on standing.

When I'm not flared up I have no symptoms. Is that strange?

I've had these flare up for the last 6 years and I guess I'd just like to find one other person in the world that experiences the same thing. Just one damn person lol. Does anyone have any insights or experience similar flare ups?

The best I've come up with is that this is a small fiber sensory neuropathy but I'll have to confirm with my next neuro.

Thx

Could be HNPP...
http://www.hnpp.org/hnpp_symptoms.htm

Went to see a new neuro today. He did a good workup including NCS, he basically said that my nerves are fine but he theorized that my small fiber neurons are just hyper excitable. He didn't think that a skin biopsy would uncover any pathology.

Showed him that my TSH had recently tested high and he didn't completely rule that out as an underlying trigger.

Unfortunately he didn't have any compound creams that he prescribes for burning.

Unfortunately, the ONLY test to uncover answers about the small fibers IS the skin biopsy. The NCS (and EMG) is unable to detect issues within the small fibers.

It's too bad he won't pursue this for you so you may confirm/deny SFN.

Salut en bloc, he told me that here in Canada there aren't many places that do skin biopsies.

When I was in University about 15 years ago I would suffer from bouts of respiratory alkalosis due to anxiety. I'd feel really dehydrated and had to lie in bed for a day or two till my ph balanced itself.

Although I rarely get noticeably alkaline anymore, this is still interesting because I was just reading about how alkalosis triggers neuronal excitability which is what this neuro thinks I have.

I also read that caffeine has an excitatory effect on the nerves and makes them more apt to reach their firing threshold. I'll experiment by going without coffee next time I have a flare up and see if it helps at all.

Does anyone know what sensation/s is/are associated with nerves firing?

I'm in a tough spot because exercise is one of the things that triggers my flare ups (consisting of generalized fatigue and nerve inflammation lasting a few days post-exertion).

So I've tried to avoid exercise for the last 6 years but now my cholesterol is getting quite high and I've gained weight as well.

According to this article exercise should reduce inflammation of the nerves including inflammatory cytokines etc... I wish I understood why it seems to have the opposite effect with me.

I'm still thinking that the underlying cause for my flare ups is metabolic like a ph issue or possibly hypoglycemic episodes, lactic acidosis or something like this.

I'm sure that if I spent a week in the hospital while they ran tests and had me run on treadmill to induce a flare up and they measured all the changes in my body that they would find the underlying cause. It's really frustrating that because my illness is so unconventional that the will of the doctors to get to the bottom of it or to invest such resources as having me admitted for a week is sorely lacking. I'm in Canada so it's not like I can just pay to have them do what I want.

I'm guess I'm just going to try to do these tests on my own, like I can buy a blood sugar monitor for ex.

We have the same thing here in the US. All the doctors do there own separate piece of the puzzle. No one wants to take the time to investigate every avenue to get the complete puzzle.

I have searched for a diagnostician in PA and there does not seem to be one. I tried to go to the undiagnosed diseases section at Hopkins but they wouldn't take me because they said I have the diagnosis of SFN. They told my neurologist if any other symptoms show up try applying again.

It really is a shame your doctor won't send you for a small nerve biopsy. It is not hard to have done. Maybe you should try searching for a neurologist who does them.

Ya that's very true.

Like the underlying cause of my flare ups could be in any number of disciplines. It's kind of crazy that I as the patient have to figure out which of these disciplines my underlying cause falls into because as you pointed out, their knowledge is so compartmentalized. I like the idea of a diagnostician and wish that they were more common, if such a thing exists.

Did you get small nerve biopsy and may I ask if the results were useful to you?

Yes I did get the biopsy. It is not hard do. I actually had no pain. It is a punch hole, then they analyze the nerves in the skin.

I think the results were very useful to me. It gave me an answer for my symptoms.