Small Fiber Neuropathy: What helps?

There are quite a few doctors like that. My first neurologist wouldn’t treat it as well. I go to a neurologist who specializes in sfn. I have autonomic small fiber neuropathy so I needed someone who deals with this on a daily basis.

I liked Dr Karissa Gable at Duke for Neurology. I was never diagnosed with SFN, but I imagine she treats it, I am thinking that visiting a rheumatologist might be a good next step for me, but I’m in the Charlotte area of NC now so would prefer not to travel to Duke for one.

Since diabetes is a leading cause of neuropathy and you don't your cause just yet, I think it is a good precaution while you search for the cause. My routine lab work shows I do not have diabetes but that is based on glucose level standards. "One size fits all" thinking. Perhaps I have a glucose tolerance issue that does not respond to the blood test and requires a different test to reveal itself. I don't know but I have an appointment with an endocrinologist to pursue this. Another common cause can be thyroid disease. I don't know my cause but I'm looking into the most common ones first. Just my way of thinking. Can't hurt!

Thank you. I have been considering duke because I live in the Columbia area so it's about the same drive time wise as MUSC. I get losing your income over SFN. I was a licensed cosmetologist but had to stop and drop my license because I started having spasms and would throw equipment at myself or across the room. That was 2 years ago. Now every job I get I struggle bust for a few months then end up with worse symptoms and end up losing my job at some point. It's been a vicious cycle but my fiance and I are going to start a 3d printing company early next year so fingers crossed it will work out for us.

I have just been diagnosed with SFN.
Did anyone try the red light therapy? Thanks !

@simina1234 I'm not familiar with what that is... can you elaborate? Gracias

I started having pain in my left foot that traveled up my calf than it moved to my other foot and up to my right calf than to my hands. It finally went into my buttocks and hips. I saw several doctors and finally saw a Musculoskeletal Neurologist who did several blood test, EMG,MRI and skin lab test which all came back normal except the EMG test showed nerve problems in my lower spine. I was sent to a surgeon for the 2nd time the 1st time in 2018 the surgeon said I had a bulging disk L4-L5 and I didn't need surgery than told me to see a chiropractor. I was in so much pain and it had travel to my hands. I was treated by 3 different chiropractors and nothing helped. I went to another prominent neurosurgeon in 2020 and was told I had a herniated disc between L5-S1. I figured the chiropractors did it but the pain was traveling up my spine, I have numbness, skin sensitivity, painful pricking, sharp electric shock like pain that seems to be damaging my muscles. So I under went surgery but to this day the pain is still traveling up even to my tongue, temples and at times my face. I'm very sensitive to the sun never was before and clothes. I'm now back to seeing the Musculoskeletal Neurologist whom seems to think I have SFN after I told him this is what I feel I have. He now tells me he always thought I had it but why didn't he tell me that before I had surgery! He's running more blood test and another skin biopsy. I get the feeling that he doesn't want to be bother with me. I've also been seeing a pain specialist doctor that is trying his best to manage my pain but I'm very sensitive to medications. I'm taking 50mg of Lyrica 2 x daily and Low Dose Naltrexone (LDN)
2mg once at night. I've been blessed that I can sleep though all this. I also have lumps under my skin in my legs, arms and one in my neck which I had check by a dermatologist who sent me to a surgeon. The surgeon said it was a lipoma and there's nothing to worry about but I told her the pain in the lumps feels the same as the pain elsewhere in my body. I really do not know what to do, I feel like the doctor's are giving up on me and think I'm insane or a hypochondriac. I do not have Fibromyalgia or Sjogren's. The LDN seems to help but I just started it and its' not FDA approved to treat pain.
Has anyone used LDN for SFN? If you go on there website it seems to help a lot of chronic pain. Here's their websites if anyone would like to learn more:
ldnscience.org
ldnresearchtrust.org
I never heard of the Protocal 525 I'm skeptical of vitamins and I take 2 aspirin a day for another condition so omegas 3 seems to give me very large dark bruises. Does anyone have any other advice for me? I feel lost and afraid of what my future will be.
I thank God for everyday. I'm so thankful that I found this support group.

Who is your Neurologist at Duke Med. that’s where I was diagnosed.

Welcome @simina1234, When I was first diagnosed with small fiber PN I looked into the infrared therapy but was concerned about the cost of the treatments with no end in sight or guarantees so decided against it. I also saw something similar I thought might be helpful but have not tried it. There are a couple of discussions you might find helpful to learn what others have found helpful.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Infrared Sauna Treatment for PN: https://connect.mayoclinic.org/discussion/infrared-sauna-treatment-for-pn/
-- Laser Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/neuropathy-1/

@juanito and @ecc79 may be able to share their experience with infrared therapy with you.

Are you able to share a little more about your symptoms and any treatments you started or that have been recommended by your doctor?

Hi @notgivingup17, I'm sorry to hear that the doctor's seem to be giving up on helping you. I've been on the Protocol 525 since 2016 when we ordered the individual supplements before it became the 525. The reason it's called the 525 is that we used to take 20+ pills/capsules daily and it's now 5 in the morning, 2 at noon, 5 in the evening for 525. You can read my neuropathy journey here - https://connect.mayoclinic.org/comment/310341/

From your description it sounds like nerve compression in your spine is possibly causing some of your symptoms. There is a discussion started by @jenniferhunter which you might find helpful - Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There are several discussions on LDN that you might want to read through:
-- Low Dose Naltrexone and Neuropathy: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/
-- Anyone with experience using Low Dose Naltrexone?: https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/
-- Low-Dose Naltrexone for Chronic Pain: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-for-chronic-pain/

Sometimes it can be overwhelming if you focus on the pain and what tomorrow will be like. What helps me is taking each day one at a time and focusing on positive thoughts to keep me in a good frame of mind. If you have a little time, here is a website I've found really helpful - https://www.resilientoption.com/resilience-bytes