I could understand if your doctor says it's difficult to get done in Canada, but I don't understand his first reason...that no pathology would be uncovered. How does he know this? And actually, ruling out a problem is just as useful. So if the biopsy is negative, it at least rules out SFN. But it could be positive...he can't tell the condition of your small fiber nerves by an exam.

Not only may it give you answers, but those answers may also provide different treatment options.

I would do as Hopeful suggests and get another opinion if that is possible. Or research to see what & where skin biopsies can be done in Canada.

I had two...very helpful. And they can be repeated to gauge progression or improvement.

I understand your frustration. As mentioned before, doctors are specialized in their respective disciplines so getting a full picture of what is causing/triggering your flare ups is very difficult. You see a neurologist for the nerve pain, a rheumatologist for possible underlying auto immune issues, an endocrinologist or GP for thyroid/diabetic issues, naturopathic if you seek that route and a psychiatrist for when all the above begins to drive you INSANE! They do not ever meet or speak to each other so making any connection between all the internal systems is complicated.

The flare ups you experience have been described by others, although most seem to have some intermediary symptoms like numbness. For me the nerves firing varies, but this past week has been a constant state of pain alternating between "burning feet" and shooting pain. My "normal" is numbness and achey pain in the feet and sometimes hands. Now it has suddenly moved throughout my body . This is not meant to scare you-but you did ask if anyone has experienced anything similar. This neuropathy manifests itself differently in everyone.

As hopeful said, getting the nerve biopsy can be helpful and is not very painful. You read horror stories about them if you google enough, but it is a punch hole usually done in three places going up the leg. It leaves a very small scar and is only unpleasant for the 5 seconds it takes to "punch" the skin for the specimen. I rec'd a diagnosis of small fiber nerve damage caused by innervation of the sweat glands. In and of itself, it does not provide a cause of anything other than confirming what the EKG and nerve conductions studies did not-that there is indeed nerve damage.

It is beneficial to have the biopsy so you know whether or not it is indeed SFN. Other studies can miss this damage completely. On the other hand, it does not mean you will discover the underlying cause. My local doctor did not perform the biopsy. I traveled to Johns Hopkins in Baltimore, Maryland. If you can afford the expenses, and you cannot find a local specialist, it might be worth your while to look into a specialty clinic like John Hopkins. The other positive is that the specialty clinics have teams of doctors from varying specialties who all confer on a diagnosis.

Tyvm cat and en bloc for your thoughtful replies. I really appreciate it.

Given that fatigue is a main part of my flare ups I had considered CFS/ME and dismissed that idea as it didn't seem to fit my case. However, after reviewing the Canadian Consensus on CFS, which spells out in great detail what that condition involves, I feel that my condition can fall within that criteria. What particularly struck me was the post-exertional malaise aspect which can come with a delay of 1 or 2 days after exertion like in my case.

Tbh though, I'm still not completely sure whether to view my post-exertional nerve pain and myalgia as the main symptom and that the fatigue is a byproduct of that, or if I have CFS that happens to be accompanied with nerve pain and myagias.

I guess it would help me to know if you guys ever experience debilitating fatigue when your nerve pain is bad?

I've read about how what I experience could be due to the inappropriate opening of acid sensing ion channels. It makes me think that what my neuro said about my nerves being hyper-exitable, while simplistic, may be true.

Regarding the skin biopsy, I have found a place here in Canada that would do that procedure. It's actually the same place where I had my needle muscle biopsy. I'll keep in mind what you all have said about giving it a try.

However, given that my nerve pain is not constant and it's symmetrical in it's manifestation I'm reluctant to think that there is any underlying pathology that can be found. At least not with the tools that exist today. I suspect that what I have is beyond the scope of science atm and that my best bet is to keep experimenting with what supplements/drugs work best for me and just manage my symptoms the best I can.

Nebulous,

I would be willing to bet that you do have small fiber neuropathy. My symptoms waxed then completely waned repeatedly. 2 years ago I had a biopsy that revealed SFN. Now my symtoms have worsened and it seems as they won't wane completely this time. I hope I am wrong.

I was initially hesitant to get a skin biopsy since it would not reveal the underlying cause which all neuropathies have. I would also have to travel to another city. However, after further thought I believe that knowing what kind of nerve damage is occurring might be diagnostically useful in helping to identity that underlying cause.

Btw, my latest thoughts regarding my condition are that it is some kind of non-demyelinating inflammatory neuropathy possibly with an auto-immune condition as the underlying cause/trigger. I haven't tested positive for any auto-immune markers yet but I'm looking into other ones.

So I will be requesting a referral at my next doctor's visit for a skin biopsy and consultation at the neuromuscular clinic.

Thx again for your input guys.

Was just reading through posts and found yours....so glad to hear you are going to have a skin biopsy. It's very frustrating to have to be your own health advocate but that's the way it is most of the time. I've had to figure it out by myself all the way.

I asked for a skin biopsy in Sept of 2013 and the results floored me. I didn't even know about SFN until I happened upon it on the net. I had already had the nerve conduction, back x-rays, MRI's and the blood work. I had just finished chemo and my A1C was up but I just kept getting passed over by the doctors.

Anyway......my results were 0 on a scale of 0 to 15 with Bako Labs. I have no A or C fibers left in my feet.

It was a huge relief to finally have a dx.

Please keep us posted.

Debi in Georgia

Nice to read your post. Yes I'm also glad and looking forward to see what the results will show.

Congrats on getting a dx. No fibers in your feet, wow. Are you able to feel pain? I also wouldn't have thought it possible to move a limb without any c fibers.

From what my doctors say and what I've read about SFN you either have absolutely no feeling at all which presents its own set of problems or you are like me and the pain is because the nerves still fire off messages that get all mixed up in the spine and the brain misreads as pain. I can bump my foot and not feel anything but the next time I bump the same area they are pulling me out of the ceiling. It started in my feet and has since moved to my hands and my upper right arm. I have burning, stabbing, electrical shocks and so on.

I'm up now because of the pain. Waiting for my pain pill to kick in for some relief. I am unable to work and had to go on disability and am in my house 99% of the time. For a very active mom and grandmother that was a very hard pill to swallow and still is. I have a wonderful family and they make it much easier for me than some people have it.

Gotta go....my right hand is numb to the point of hurting.

Take care of yourself.

Debi from Georgia

I have never had any tests; but have very similar issues with the feet misfiring. Like they don't know when to stop. As you say; sometimes just slightly stub a toe or foot and the pain is almost unbearable. So much of the pain radiates to the spine. Like you; home most of the time.

Unfortunately I seem to feel I deserve treats; i.e., candy, cookies, etc. Not the best way to treat pain. While watching t.v. late at night, my night time snack is munching on dry Cheerios (Regular, mixed with a majority of MultiGrain Cheerios). I guess it keeps my mind off some of the pain/burning or at least I try to convince myself it does.


Gerry

There are tests that help identify small fiber neuropathy, such as a sweat test (identify if there are areas you are not sweating), sensitivity to vibration, heat, & cold. They can test such things at a specialized facility such as Mayo, I know there are others. They told me they don't generally do biopsies anymore because they can get as much info from these other procedures, which I suppose have less risk to the patient. They have designed and built their own devices to perform these tests, at least it appears so.
Ron