Desperate: Is there any hope for neuropathy?

I should add, my A1C hovers between 5.7 and 6.0 and fasting blood sugars are always under 100.

@cecelia19
I am a 55 year old female with idiopathic small fiber neuropathy/peripheral neuropathy, congenital spinal stenosis, degenerative disc disease and osteoarthritis. This all was diagnosed when I was 42 and 47.

My neuropathy started in my feet with burning/pins and needles and especially worse in warmer months. I started taking alpha Lipoic acid, acetyl l carnitine and other nerve health supplements and it helped reduce the symptoms. I used capsaicin creams on my feet, too. I never had a bad reaction to the supplements or creams.

Have you been diagnosed with small fiber neuropathy by a neurologist via a skin punch biopsy? Have you had full bloodwork panels done for neuropathy? My rheumatologist and neurologist did very extensive bloodwork to try to get to the cause of my symptoms. Are you deficient in B12 or at toxic B6 levels? Have you ever been exposed to toxins throughout your life?

Have you ever had EMGs/nerve conduction studies or MRIs done by a neurologist to check for spinal cord or nerve root/nerve compression/radiculopathy? My spinal stenosis and DDD has caused cervical/lumbar radiculopathy to arms/hands and legs/feet plus neurogenic claudication causing pain/weakness/numbness in back/hips/buttocks/legs/feet.

Don’t give up hope and keep asking questions and reviewing your list of symptoms with doctors to get to root cause.

Btw…I also have autoimmune Hashimoto’s thyroiditis and alopecia areata. I have read that small fiber neuropathy could be caused by an autoimmune attack in your nerve cells.

It can definitely be an uphill battle with the neuropathy symptoms @cecelia19. You are not alone in your daily struggle and there are many members here on Connect that I'm sure can relate to what you are feeling. Here are a few searches of Connect that you might want to scan through the discussions and comments on things you mentioned in your discussion.

-- MTHFR: https://connect.mayoclinic.org/search/discussions/?search=MTHFR
-- Raynaud's: https://connect.mayoclinic.org/search/?search=Raynaud%E2%80%99s
-- Burning, pins and needle like pain: https://connect.mayoclinic.org/search/?search=Burning%2C+pins+and+needle+like+pain

There are also a lot of great webinars on the Foundation for Peripheral Neuropathy's YouTube channel that you might find helpful for learning more about the conditions and what helps - https://www.youtube.com/@foundationforperipheralneu4122.

@cecelia19
I forgot to mention that Cymbalta/Duloxetine is prescribed for chronic pain, neuropathy, osteoarthritis and fibromyalgia. Not sure if this is something you would want to talk to your doctor or neurologist about to see if it can help you better manage the nerve pain.

Are they safe to take if you have osteoporosis?

@iamnana
You can check with your doctor, pharmacist and nutritionist about neuropathy supplements and osteoporosis treatments/medications and supplements. I am not aware of any issues.

Here is a good site that explains benefits of Acetyl l carnitine and even how well it works with alpha Lipoic acid.
https://supplements.selfdecode.com/blog/acetyl-l-carnitine/

Hello Cindy, my name is Bobby Pazo from Key West, Fl--born and raise here, we're call KWConchs, any way I read with interest on your post--I'm==83--retired mail man here in Key West but I played {guitar}music part time for over --30---years here in Key West and this week I think my music days are over for sure ,I fell and broke my little pinky finger in my left hand but before that happened, over two months ago, my hands were getting numb and tingling and my wife and I talked it over and I decided to completely retire because of the numbness. Last year I had --4--consecutive
Colon surgeries and the last one I had an infection made it's way to my spine, Fistula. I was in the hospital about two months in Miami--bad at that time- when I came home, that is when I started having numbness in my hands once in a while, but two months ago it became every day. So I thought you would note that some on people- {me} -read your note to the Mayo Clinic. We keep thinking---these are supposed to be the Golden Years???
Take care Mrs Cindy and good luck with your illness, Bobby Pazo

I can’t thank you enough for your detailed reply and description of your condition. I haven’t had most of those tests and have to wait to see my neurologist until 10/8 as he is out on a medical leave. My PCP is referring me to U of M’s neurology/pain department (I live in Michigan) but will go to Mayo if they can’t give me an answer. I’ve been to Mayo eleven times, ten of those with family members who have been ill. I know my way around the joint and feel very comfortable there. Your response makes me realize that there are many more avenues that need testing than I would have anticipated. Today I had some relief from the Medrol steroid dose pack I started this morning. I assume that means there is an inflammatory component to this pain. Are you comfortable now?

Thank you so much, John. I can’t tell you how much it means to connect with such supportive people who understand how difficult this is. I have had a lot of pain in my life - IC, TGN, post op recoveries from open heart valve repair, two large abdominal surgeries, ankle tendon surgery, but I would take every one of these back, not to have this.

I didn’t know that until researching this blog. I imagine that I would have to d/c my Elavil but if not, I would jump on this. If it is considered a better option than Elavil, I’ll do this too. Thanks! Before getting on this blog I felt like giving up. This makes me realized I have a lot of options I can try.