Small Fiber Neuropathy: What helps?

Post by @artscaping to @aliceccentric (lost when we moved @aliceccentric's post here)

@aliceccentric, welcome to our very involved and committed group of folks dedicated to finding treatments that help and then sharing them with others who suffer from a similar condition. I received my diagnosis of idiopathic small fiber neuropathy 2 years ago. Unlike @johnbishop, my slice of the pie also arrived with pain. So the steps for me in rank order are numbness, tingling, and then needle-like pain. With the growing intensity of my symptoms over time, the numbness became a more urgent issue as my stability declined and I was on the verge of giving up driving because I couldn't feel my feet. The solution arrived in an unexpected way….myofascial release therapy conducted by an expert level MFR therapist. I now see her one a week and some of our time together is spent bringing feeling back to my hands and feet. It is great to walk across a carpeted floor and actually feel the loops of the fiber. It is rewarding to know that my foot is actually on the brake in the car. My feet are not as tight and the feeling of restriction is considerably alleviated. The benefit of the treatments can last up to 2 weeks. Might be worth a try.

Thanks Chris @artscaping - I copied and pasted your post here. I still haven't looked into the MFR treatment but once I get me knee back to somewhat normal I'm thinking about looking into it.

Has anyone here thought they have fibromyalgia. ?or muscle skeletal issues. It’s so confusing. The all over body pain. I go for soft tissue massage. My body hurts horribly afterwards. Every inch bones muscles tendons skin. Same with swim therapy So I had the punch biopsy last week to see if it’s neurapathy.
Test results 2 weeks.
I just constantly hurt all over head to toe. It’s like having the flu but you don’t.
Anyway I just saw the test for Fibromyalgia. FM/a suppose to be a definite way to diagnose fibromyalgia.

I have no diagnosis yet but it seems clear to me that I have some form of neuropathy. 18 months ago I woke up one morning and had some facial numbness and had numbness and tingling pretty much all over. I thought I slept the wrong way on my neck or something. Had a brain and cervical MRI to rule out MS. Since then the numbness and tingling progressed into intense burning in my feet and my pins and needles over the rest of my body and now pins/needles, muscle cramping and twitching. The pain is the worst in my feet and hands. The twitching drives me crazy and it all is making me nervous about what is going on. I've had all the autoimmune tests and today I had an EMG and conduction test which was only slightly abnormal but not enough to give me a diagnosis. I've read a lot about SFN and I guess that's what if could be? I'm guessing I would have to have a skin biopsy? I would like to know if anyone with SFN has muscle cramps, weakness and twitching. I thought that was mainly from large fiber or motor neuropathy? I hate this! I know the doctors are starting to think I'm just crazy. I would appreciate any input. Thank you!

Hi @bethb94, I think a lot of us have been where you are and I'm glad to see you are being proactive and learning as much as you can about your health condition. It can be unsettling to not have a diagnosis but don't give up. The National Institutes of Health page has some good information on diagnosis and treatment here:

NIH - Diagnosis and Treatment of Pain in Small Fiber Neuropathy
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

Did your doctors schedule any more tests for you or an appointment with a neurologist or other specialist?

John

Thank you so much for your quick response. I am going to see a neurologist next week. I saw one when the symptoms very first started but all she did was rule out MS and send me no my way. It's not that I want the tests to show something wrong but there is something wrong. This is not in my head. I know something is wrong with the nerves. Maybe it's not advanced enough to show up on a test, although the symptoms sure do feel advanced. I was shocked that the EMG didn't show anything significant. Pretty sure my insurance won't cover a Mayo doc, but at this point I don't care if I pay out of pocket. I don't have a lot of money but I could try to get enough to cover it. Can I ask, in your experience do you think the muscle cramping/tightness, sharp pains and twitching be from SFN. I know you're not a doctor but you do have SFN, Right?

Hi @bethb94, I have idiopathic small fiber peripheral neuropathy but have never felt pain only numbness with mine. I wrote a post with my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

It's not uncommon to have multiple symptoms and other autoimmune diseases with SFN. Your symptoms sound a little like restless leg syndrome - https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/symptoms-causes/syc-20377168. There is a discussion here on Connect that you might want to read through:

Groups > Brain & Nervous System > Restless Leg
-- https://connect.mayoclinic.org/discussion/restless-leg/

Does the muscle cramping and tightness occur at night? Also, do you stay hydrated by drinking a lot of water? The reason I ask is some people will get severe leg cramps when they don't drink enough water.

John

By the way, thank you for the NIH link. I had seen that before. I just can't find anything that says my symptoms are related to SFN except the burning and pins and needles. I was just hoping somebody who actually has it could tell me if they have similar symptoms. Thanks again.

Thanks John, I would bet my life it's neuropathy and not restless leg but I appreciate the info. I am well hydrated. If I don't get any any answers I would definitely make an appointment at Mayo. I know that unless you have an autoimmune disease, have been on certain medications, have diabetes or cancer, neuropathy is usually diagnosed as idiopathic and only the symptoms can be treated. Although, I've recently read some promising advances made with stem cell treatments but there VERY expensive. I am wondering if Mayo Clinic offers this treatment. Thank you again for your quick responses. I appreciate the feedback.

Hi @bethb94, As promising as stem cell research is for a lot of things, I don't believe there has been any successful treatments for neuropathy. There is a good discussion you might want to read through on Connect:

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
-- https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

There are also some warnings about all the stem cell clinics popping up.

Consumer Updates > FDA Warns About Stem Cell Therapies
-- https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm