Just Diagnosed with Small Fiber Neuropathy

I have no problem traveling outside the state to find someone that can help.....i have googled 100 diff ways to find someone and i keep getting home remedies and 5 ways to know you have this.....getting aggravated.....lol

Believe me, I understand more than I want to, as my hands and feet/legs are on fire most days /nights.
Please try addressing John Bishop or another leader for some help. They are great resources.

@johnbishop was diagnosed with periphal neuropathy about a year ago. I am not diabetic or even close, I do not drink often maybe a drink once a month, I have had the elctro stuff done everything looked fine….numerous times blood work has been done. and they can not figure out a cause. I am only 42 and very active this has really changed my lifestyle. They have basically said we don't know why this is just going to be a nuisance for the rest of your life. I was on 1800 mg of gabapentin and that did nothing now I am on 400 mg of lyrica a day which doesn't seem to help either. All they keep saying is oh your a bigger guy it may take more medicine for it to work on you. I am trying to find a better answer than that is there any sort of doctors, clinics, ect. that specialize in this sort of thing?

Do you have any recommendations for my area or surrounding?

Hello @affliction313, I understand your frustration about getting answers. That's one of the reasons Connect is a great source of information when we can share and learn what other members are doing for treatment. You might want to introduce yourself in the following discussion where you can meet other members and learn what they are doing for treatments.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I don't have any pain with my neuropathy so the drugs don't do anything for me. It's my understanding that the longer you are on these types of drugs, the more you will eventually have to take but I have no medical training or background so it's just what I've read. You can read my story and what helps me a little here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I wished I had an answer for your question - are there any sort of doctors, clinics, etc. that specialize in this sort of thing? A neurologist is the doctor that specializes in diagnosing neuropathy through testing, symptoms and physical exam.

I did not get help from 1st two neurologists. They never mentioned small fiber neuropathy.
You need some one who does. Maybe try asking your neuro for smallfiber pn specialist. Also try pain- management, they may know a referral for this type of neurologist.
Ask about punch skin biopsy as well.

@affliction313 My experience is with issues that are caused by nerve compression which can cause pain anywhere along the path of the nerve. What has really helped me is myofascial release work that my physical therapist does. Injuries, poor posture and body mechanics, and surgery cause scar tissue in the fascia that gets too tight and because that can pull the body out of ergonomic alignment, it can cause a lot of pain and reduced circulation of lymph fluid in the body (which is vital to remove waste products) so that stuff gets trapped in tissues that are not hydrated properly. This is what has recently been called the "interstitium" which is the "new" organ in the body, but this therapy to treat fascia has been around for 40 years and was developed by John Barnes who is still teaching. I have been doing this MFR for about 4 years for thoracic outlet syndrome and more recently spine surgery that was done at Mayo. During the time I was treating the TOS with MFR therapy, a disc ruptured in my neck. It took a few years to find a surgeon to help me during which time bone spurs grew and all of it compressed my spinal cord, but MFR and physical therapy helped keep my neck as stable as possible. Even though I needed surgery, I had good pliabililty of my neck muscles from MFR, so that made the surgery a bit easier because the muscles were loose enough for easier access by the surgeon, and my recovery was great. My therapist told me patients doing MFR have better recoveries and she was right.

Here are a lot of links to information and this treatment is a slow process to work through the layers, and it's different for everyone. An expert level therapist can feel the pathways of tight fascia webbing through the body and work to release it. MFR can treat and resolve problems that traditional treatments have failed to resolve. Once you understand this, there is a lot you can do at home. The patterns change as you work through the layers. There is a lot more information at this myofascialrelease.com website, but these links caught my attention.

Problems that MFR helps
https://myofascialrelease.com/about/problems-mfr-helps.aspx
Benefits of Massage-Myofascial Release Therapy on Pain, Anxiety, Quality of Sleep, Depression, and Quality of Life in Patients with Fibromyalgia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3018656/
Therapeutic Insight: The Myofascial Release Perspective—Depression John Barnes
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivedepression-8584/
Use Fascia as a Lever John Barnes
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
Therapeutic Insight: The Myofascial Release Perspective—Sympathetic and Parasympathetic Shock
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivesympathetic-and-parasympathetic-shock-7709/
Lumbo Sacral Decompression video with John Barnes

My name is Elisabeth, I was declared prediabetic three years ago. i am not overweight. I cut carbs, bread, pasta etc and allow myself a pieceo of pizza everth other month. I am no longer diabetic. My mother was diabetic and my friend is diabetic and shoots herself insulin three times a day. You can do it. not difficult. After a while it becomes a habit.

Hi, @lavieauxusa1972 - I think that your journey with prediabetes would be encouraging to share in this thread, if you feel comfortable doing so https://connect.mayoclinic.org/discussion/prediabetes-daily-recommended-sugar-and-carb-intake

@boo55 - If I understand correctly, you have a mixture of toe numbness and feeling like your feet are on fire? How are you doing?

I just got bloodwork back that shows gluten sensitivity again.( I have had negative biopsy for celiac ) Trying to watch sugar and gluten though not ready to go gluten free . Any diet suggestions would help. Just frustrated with all this at the moment. Pain and numbness still there. Cold Midwest weather does not help. Thank you for asking how I am.

I'm not sure what kind of neuropathy I have, but my neurologist is sending me to a nerve- muscle specialist. I have to say I am so scared. My legs burn so bad I can hardly function..I'm thinking it doesn't matter what kind you have as nothing helps.