Just Diagnosed with Small Fiber Neuropathy

Rachel, on a post somewhere in this dialogue, you mentioned your experience with R-Alpha Lipoic Acid and the regimen you have found that best suits you. I ordered the R-Alpha Lipoic Acid 300 mg and thought I might take just one capsule/day for several weeks. Do you take it morning or night and also with or without food? Also I just receive liquid B12 Methylcobalamin & adenosylcobalamin. This is all new to me .. have you heard people mention with or without food etc? Thanks for sharing .. fresh diagnosis and a lot to wade through.

HI @rebe, welcome back to Connect. Thanks for reaching out with your questions about my experience with R-Alpha Lipoic Acid. I noticed you haven't posted in a while, I'm sorry for your recent diagnosis of small fiber neuropathy. Did you have a skin punch biopsy to confirm your diagnosis?

My neurologist recommended I begin taking R-Alpha Lipoic Acid and Acetyl L Carnitine for neuropathy. Although I no longer take supplements, I recall him prescribing the dosage. Have you spoke to your neurologist regarding supplementation and the best practices?

Has anyone had the Nerve Block done for peripheral neuropathy? I am having it done next month as the RX and other treatments haven't been successful. What should I expect? Doctor said they will do an injection on the inside of each leg below the calf. I hope this works cause I have no intent to do the stimulation implant. Thanks for your time.

I was just dx with sfn. I have it from head to toe and have had it for about 2 years. Did your pain Dr. recommend injections or your neurologist? I'm interested to know if they work. Thanks.

Hello @moni130, Welcome to Connect. While you are waiting for reply to your question from @myfeetareonfire, I thought I would ask what treatment you have been on since you were diagnosed 2 years ago and if it is helping or not?

This is a LONG thread and kind of all over the place. I originally came to this thread because of ischial tuberosity pain on the left side which I have dealt with for about 2 years. I have been in pelvic floor therapy for most of the year. If I sit too long, not only do I have the sitz bone pain but also pain in the pelvic floor itself. Probably because of my underlying condition of hypermobile Ehlers-Danlos, I am not coming to resolve on pelvic floor strength and improvement. So I am just on maintenance therapy. I have an appointment every three weeks and usually have some internal myofascial release done as well as external release around sitz bone and tailbone areas. I was feeling pretty frustrated but see that many of you are far worse than I am -- which gives me some perspective.

My pelvic floor therapist is stumped as to the sitz bone situation. I was just referred to another PT and will see her tomorrow and hope she has some ideas to improve my ability to sit. I have been wondering about upper hamstring tendinopathy or gluteal tendinopathy as a root cause. I am hopeful that we can find some exercise or forms of movement that will be helpful.

I did have some pudendal nerve entrapment for a while but that does not seem to be the issue now. With hEDS, because of the laxity of so many tissues, nerve impingements can be common and laxity of connective tissue can present many problems too.

Interestingly, I was diagnosed with EMG positive polyneuropathy and told that I had peripheral neuropathy in 2015. At that time, I had a lot of tingling sensations in my feet, felt like a hairbrush being pushed into feet, poor balance, couldn't tandem walk or stand on one leg. However, I think this is all just due to my hEDS. My neuropathy symptoms are very intermittent. I can now stand on one leg for over a minute. I can tandem walk. If I'm really tired or stood a lot in a day or am overly stressed, the tingling symptoms are more prominent. My feet can get really cold sensation but I haven't had that for quite a while either.