My experience with Small Fiber Neuropathy

Hello @salve97, Welcome to Connect. I think you were replying to the member who started this discussion @djroberts. I'm not sure the member is still following Connect but hopefully will see this post that mentions their member name and respond to your question.

You may be interested in the following discussion where other members have shared their stories and what has helped them -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing a little about your neuropathy diagnosis and any treatments you have tried?

Hi everybody. I'm new in this forum. I don't have still my diagnosis but one of the neurologist I visited sais so an told me they are buying a corneal microscope that can find the small fiber damage .My feet hurt a lot and my hands are numb.. As if Ihad globes on. Ive also had digestive problems. I, m on lyrica and amidtriptilineq. They said it could be autoinmune because I have hipotiroidism and autoinmune gastritis. My vitamines are ok . Im taking b12. Magnesium. Nucleodol and gyn tonic from to time. I have an appointment with a podologist. What else can I do to relieve the pain? Thks

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Welcome @gregoria, It can be difficult to deal with the all of the different pains that are related to neuropathy and associated conditions. There are a couple of websites that you might want to use as a reference to learn as much as you can about your condition which may help you discuss your symptoms with your neurologist or doctors.

-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy - Treatments: https://neuropathycommons.org/neuropathy/neuropathy-overview

What is the hardest pain symptom for you to manage?

I wish I could help. Nothing has ever helped my SFN.

I am so sorry to hear of your struggles. I was finally diagnosed recently after twelve years of not knowing what was wrong with me. I have Small Fiber Neuropathy that has affected my heart, lungs, digestive tract, bladder, legs, arms hand and feet. I have been sent to physical therapy for issues with my left side and I am also being sent to a pain management clinic for help with the pain. I take Lyrica (300 mg per day), duloxetine (60 mg) and NSAIDs for the neuropathy. It does not seem to be a kind illness when it comes to pain but I hope you can find some relief. There are others on this forum that use differnt things like heat, epsom baths, vitamins/minerals, diet etc that might help you. I have found this forum to be very informative and helpful.

I got a biopsy of my upper and lower leg. It was sent to a lab in Texas who can accurately tell you if you have SFN

Yeah the symptons are changing, sometimes get worse and sometimes get better but they are asill there. Now my reflux coming back and Im taking esomeoprazol, my feet dont ache as much but they get very red as well aa my hands. I have sleep problems because my legs burn and my feet are cold. I put a cushion below my back and take tryptizol 10 for yhe night. I wake up sometimes sweating like a madwoman. Im still jogging but sometimes I feel dizzy or lack of energy.. I had a sweat test both hands and feet my sweating was proved poor but in the limits.. Im getting rid some shoes because they hurt and I can get hot food with my fingers not feeling anything.. I take a lot of extra suplementd and also nuceodol and im trying to get rid of my pregabalin.. I got rid also of gluten because I was proved sensibility to gluten and my stomach seemed to get better. I listen to asmr videos while trying to get some sleep and i enjoy that relaxing time those whispers provide me. Im doing all this but still dont have a Sfn diagnosed.. Only suspected. Im waiting for a corneal microscope my private nerologist is buying after easter . I live in northern Spain and so far there not many cases of Sfn . They are investigating other autoimmune deseases. I hope you also are doing as well as you can, just like me, trying some stuff we have heard in the forums. We need to have faith. Good luck

Hi everyone. DJ. Roberts I went through the and same situation. I seen 3 neurologist 1 neuro surgeon and finally found one that looked deeper my test was showing SFN but I had way more going on that wasn’t explained until I had a spinal tap which revealed Spinal Arachnoiditis, Hereditary SFN, And PN I have no feeling In my feet up to my knees and all the way up my left side also my hands go numb . To get stimulation to my muscles because I can’t walk much I use a probes that stick for contractions just like they use at a chiropractor
turn it up to contact the muscles 30 minutes each leg a day really helps keep my muscles as I do this with my abs and back . I’ve been doing this now for 2 years works great. I’m 51 when I was able to walk I lifted weights , Jujitsu , etc . I was a certified fitness trainer since 2008 through ISSA with a nutrition back ground . Seems a journey for all of us I quit looking for doctors and listened to my body and started changing things I knew would help and the things I couldn’t change I accepted and looked for other way to cope and other strategies . I still have to take pain meds every day , the Gabapentin, Taz,,NS’s all I can say is keep fighting for other alternatives figure out what your own body responds to and keep pushing no matter what the Neurologist say you know there is something wrong because your the one that knew how you where before this happened to you . Keep looking for a better Neurologist there out there that will dig deeper
good luck

Here is the issue with your test. They are testing your large fiber nerves. The large fiber nerve test in most cases will come up negative for any issues. The large fiber test can't detect small fiber nerve issues. To get the correct test for the small fiber nerves you must get a biopsy of the skin from a specialist who is knowledgeable about small fiber neuropathy. I have a very serious case of SFN and it took 20 years for a diagnosis through a skin biopsy. They all thought I was crazy. With the pain I was getting I knew I wasn't crazy. With mine I get a devastating itch, burn, stabbing, electric needle stabs all over my body. The itching part is one of the worst parts. My symptoms come about emotionally, physically, mentally, by the heat, by the sun, during the winter times, after hot showers eating spicey foods, eating sweets, exercising, sleeping and dreaming, working, and alcohol consumption. I too felt as if life was hopeless but I still fight on. I take many meds and am still trying to find the cause of my issues. I know more about SFN than most of the Dr's I see which is very frustrating. Just don't give up, question every weird blood result and don't allow anyone to make you feel as if you are crazy and finally demand a skin biopsy for the test. See a heamotologist a rheumatologist an endocrinologist, dermatologist and of course your neurologist and hopefully you will figure things out.

Best of wishes

Hello @issacmrobinson77, Welcome to Connect. I have small fiber peripheral neuropathy but my neurologist diagnosed me without using the skin punch biopsy which is OK by me. I had the condition for over 20 years before bothering to get a diagnosis. I had several nerve conduction tests along with a physical exam by the neurologist. The end result was the same as before, no treatment available to help with the numbness.

That's really why I started reading more about neuropathy and learning as much as I could. The two sites I've found most helpful for learning more:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

It sounds like you also have done a lot of your own research to learn more. I shared my neuropathy journey in another discussion here -
https://connect.mayoclinic.org/comment/310341/

What have you found most helpful?