Non-Length Dependent Small Fiber Neuropathy

Hi. I'm on 3600 mg of gabapentin spread out at 8 am noon, 4 pm and 8 pm. Helps my on pain in my feet by around half depending on the time of day and load on my feet. Johnmacc

I double posted by accident, see post below.

Hi all - I have had sensory NLD-SFN for five years with primary symptoms of burning. I take Lamotrigine nightly and Gabapentin as needed. The Lamotrigine in particular has been a huge help. Sleeping more/naps also helps.

A few questions:

1. I have recently started to experience skin crawling at night. Has anyone else experienced this symptom?

2. It has been hypothesized that RA is the cause of my neuropathy. Does anyone else have RA?

3. Has anyone noticed a stress connection? I have not but.

Hello @abmills, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy but without the pain, just numbness and some tingling so have not needed any pain meds. There is another discussion where members have posted about the crawling symptoms that you might want to read through:
-- Internal vibrations/crawling:
https://connect.mayoclinic.org/discussion/internal-vibrationscrawling/
There is a connection between neuropathy and rheumatoid arthritis. Here's more information on the topic:
-- Rheumatoid Arthritis and Neuropathy:
https://www.webmd.com/rheumatoid-arthritis/ra-neuropathy
I haven't noticed any additional stress with my neuropathy but there can be a connection. Here's more information:
-- Chronic stress exacerbates neuropathic pain via the integration of stress-affect-related information with nociceptive information in the central nucleus of the amygdala:
https://pubmed.ncbi.nlm.nih.gov/28225710/
If you want to learn more about neuropathy, here are my two favorite sites:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/

Have you done any research on neuropathy and available treatments for the symptoms?

1. Yes. Mostly in the scalp but rarely elsewhere.
2. No. I have fibromyalgia (diagnosed at 17), and mild right-side spastic cerebral palsy. 99% of my symptoms are left side but don’t know if that is just because of screwed up right side wiring or something else.
3. Yes. I keep having discussions with my wife on the need to retire soon as work stress makes things much worse.

HI I am new to the group. I have not understood how to private message anyone ...
I have been dx with Non-Length Dependent Small Fiber Neuropathy last week, after 2 years of symptoms. Mine started avec my booster. Actually, after the 2nd one I had join pain and high inflammation markers but after the booster my neuro symptoms started. For 16 months I was on prednisone. Then in February, when I was at 2mg of prednisone, I started having burning on my face. Until then, I only had internal vibrations. I then started LDN which was magically helping until last week, it just suddenly stopped working.
The day I learned about my Non-Length Dependent Small Fiber Neuropathy diagnosis, I started having burning hands and feets, nerve pain everywhere but mostly hands and feet as well. My vibrations are back worst than ever! I feel that I am living in hell. I have refused all the medication you guys discussed: lyrica, gabapentin, cymbalta ... because I tried them before and went through hell with them and the withdrawals side effects.
I don't know how you are all able to live and function with these horrible symptoms. I feel that I am at the end of the rope. I don't know what I can actually do to help. I have tried soooo many supplements, and diets, nothing works. I can not live like this, I can not sleep because of the vibrations.

Try not to give up and keep searching for the right doctor and/or the right medicine. I haven’t found either yet but I hope the pain management doctor I see in two weeks will help. I know it’s not easy.

I have the same condition (small fiber neuropathy). I also don’t take Cymbalta, gabapentin, et. al. I don’t tolerate medication well and so I’m afraid to try them.

I do take LDN, but I see you were taking it, and it mysteriously stopped working. Would you try a higher dose? You didn’t mention your dosage, but I used to take 4.5 mg and increased to 6 mg.

One thing you could talk to your neurologist about (if you have one) would be testing you for the FGFR3 antibody. There’s ongoing research at Washington University in St. Louis on this antibody. Your sample would have to be tested there. It’s associated with small fiber sensory neuropathy. If you have abnormally high levels of the antibody, you may qualify for IVIG or plasmapherisis (sp?). There’s not much research, and it’s hard to get it covered by insurance, but it’s intriguing if you truly want to try very medical intervention. I’m considering it.

Otherwise, I’ve had good success with PT, specifically for chronic pain (graded motor imagery) and/or you may want to consider a chronic pain rehabilitation similar to what Mayo offers if you’re not comfortable with medication (I am not). Or a pain management doctor, as @daj3333 mentioned.

It is tough and really unfair, both that this happened and that the medical system is not set up for treating chronic pain conditions. There may still be options out there. It stinks it takes so much digging to get to them, but we’re with you and can relate.

Thank you very much. I have tested negative for FGFR3 antibody, so I will probable not be eligible for IVIG. I don't think that I could afford it to be honest ... Were you positive to this?
For how long have you had symptoms?
I feel like pain management doctors will give the medications that I keep refusing. I don't want anything that will make me numb, dumb or fat. I have tried anti depressant in the past and it was a disaster (gained 50 pounds!) to stop them.

You're welcome. Oh wow, I'm glad your neurologist was thorough--I had to see 5 neurologists before someone suggested to test for it. I am positive for FGFR3, but I tested positive in early 2020, then it was COVID lockdown and I was unsure if I even wanted to do it. Then, my neurologist left the academic medical center where I'm seen and NO ONE is left there who treats autonomic neuropathy (which I have) or considers themselves as having expertise in small fiber neuropathy. No one felt confident implementing the treatment plan she came up with, and I didn't feel comfortable moving forward with someone who didn't seem invested in how I tolerated it or the outcome.

Fast-forward to now, I was evaluated at Mayo for a different (though probably related) condition a few months ago. I asked to consult with a neurologist as part of my work-up; the clinic coordinating my care requested a repeat of the FGFR3 results, so I did it while in Jacksonville. But they haven't given me the results, and when I asked on the status of the referral to neurology, I was told the treating physician wants to have a video visit with me first before placing any other orders... So that feels kind of ominous, but all I can do is wait to see what he says about the results and if I'd be able to even talk to someone in Neurology, let alone someone with experience wit FGFR3 positive neuropathy.

It turns out, there's a neurologist here who's willing to do it, and/or at least see if insurance will approve it. But I just feel hesitant because there are so many unknowns and I don't know that I can coordinate my work schedule to accommodate it (3-5 days consecutively, per month for the first 3 months). Sigh.

Anyway. I had to laugh out loud at your comment: "I feel like pain management doctors will give the medications that I keep refusing. I don't want anything that will make me numb, dumb or fat. I have tried anti depressant in the past and it was a disaster (gained 50 pounds!) to stop them."

I'm not laughing at you, but laughing at the recognition and your ability to be so direct, because I feel the same!! Or rather, I don't want to take the risk of any of those things happening, and given my condition I know that it's very possible I could experience even worse side effects and have a much harder time overcoming them. And I'm not convinced enough that I'd benefit, which makes the risk unpalatable to me.

I generally have the same stereotype for better or worse of pain management doctors, and yes, they'd probably ask about all the same things (neuromodulators, Cymbalta, Lyrica, gabapentin, feel like I can list it off in my sleep). But being on these forums, I've also heard success stories from others who've been successful with other studies or other interventions such as pain pumps, TENS units, etc. I talked with a neurologist who also saw patients at a pain clinic, and she was the one who told me about LDN (low dose naltrexone) and said there might be other infusions or injections, etc. with less side effects that her pain specialist might be able to do. I'm not sure how you'd feel about that.

But because of the success stories I've heard from others here, I've since become more open to the specialty, I guess we could say, even if it's still not for me.

Because of this, the cornerstone of my treatment is physical therapy for chronic pain, based on the "biopsychosocial" model. I was lucky and found a PT who was trained in the differences between treating chronic vs. acute pain, and we use a framework/model called Graded Motor Imagery (GMI). My pain is not completely resolved, but it's much, much better and my quality of life is much better and I'm hoping could get better still. I was able to put together most of my own chronic pain program (there are still some very frustrating holes in it), but this was most accessible to me because the only other way to access that kind of treatment is through an organized chronic pain program similar to Mayo Clinic's Pain Rehab Center.

There's also a very large and well-known rehabilitation hospital near me that offers its own chronic pain program, but I feel very conflicted about it because I feel these programs are so necessary but not set up to be accessible to regular people who have regular responsibilities (like jobs!) and/or have experienced medical trauma, so transparency is key. Anyway, at least where I live, that wouldn't have been an option for me. So I worked with my PT(s ) to come up with a plan and teach me what to do.

And it didn't make me "numb, dumb, or fat" lol. But everyone is different, and it's not easy either of course.