Supplements

@jerryw
If small nerve fibers are so robust why aren't we seeing greater improvements.
I don't believe nerve fibers regenerate very well if at all. Maybe if the neuropathy cause is found and cured they might regenerate to some degree but I doubt they will ever have the ability to function as they did prior to injury. Just my uneducated 2 cents opinion.
Jake

@domiha
Any improvement, if so how much?
Jake

That is baffling. But that comes straight from Doctors on a trusted website as far as here on Mayo Clinic Connect believes them to be. I also believe that we could regenerate IF we could focus on the cure and NOT pain masking pharmaceutical drugs, which do zero to fix the problem. Nerves do regrow, can be grafted, etc, takes time. But give me a plan of action for the next couple years, I would follow it 100%. When we want to in this Country it is amazing what could
get accomplished. But the money is not in the cure. It never is in the cure. It is is in the masking pills. Research Nuphoria Gold nerve doctors, and Nerve Shield Pro. Pretty interesting stuff to say the least. We all say we want to see what they are backed by, we what is protocol 525 backed by. They cost the most out of all that I have seen, and no ground breaking improvement for anyone I have seen . So they are all 1 size does not fit all. Maybe we need to come up with it. I mean SFN is right on the skin of my legs, and I can't rub my hands on legs and it relieves burning just going that, so surely we could come up with a cream that would easily help at least to heal the pain.

Hi, Jake. Though I can't say the supplements made it better... I hope they halped prevent things from getting worse. In the end, I may never know for sure. Mike

I want to remind everybody who has a far-off appointment, it is fine to call once a week and check for cancellations. They happen all the time, and they would be happy to change your appointment.

I don’t think you will have any luck scheduling a skin biopsy yourself. I agree it’s the gold standard for diagnosis, and I’m sure your neurologist will schedule one. Certain doctors can do them - pain specialists, dermatologists, neurologists. But no one is going to do one without a doctors order.

Having mine and waiting for the results was a time of anxiety and impatience. But I was already on the recommended treatment - seizure meds, like Gabapentin, Lyrica and now Tegretol. That’s what missing from your treatment right now. If you are prescribed those medications, and they help, that’s another missing puzzle piece in place.

Like some others here, I don’t take supplements. I have spent a ton of money on supplements in previous years, as I tried to control my various puzzling bodily changes. Looking back - many, many years - I now recognize that I had SFN symptoms all along. Itching. Damaged ligaments from vigorous regular exercise ( that’s another story). Dizzy spells. Dry mouth and eyes. Reflux. Constipation.

I am 63. My SFN is length-dependent idiopathic. My sister and I share the same symptoms, although I am worse. Look for other family members who have had chronic pain or weakness, etc.
I take Tegretol, Baclofen (muscle relaxant), Prednisone ( when I can get my hands on some), and 1/2 of a 7.5 mg Percocet three times a day. Plus various meds for my broken digestive system.

I am so happy that researchers have worked to create drugs to help broken bodies, and that I can get relief. I often think of how horrible it must be for people without the resources to get help.

You can ask any question on this forum!

Also, I have a compounded pain cream. It includes Lidocaine, Gabapentin, Amitriptyline, a few other things. I got my neurologist to order it. It expensive, and insurance doesn’t cover it. But I use it on my hips and knees, especially at night.

@julbpat
I'm curious how well Tegretol is working for you. I take another brand name of carbamazepine, Carbitrol extended-release but it never helped my pain. Do you have any balance, memory, drowsiness or other side effects?
take care,
Jake

Hi Jake. I started having idiopathic complex-partial seizures in college and took Tegretol for around 25 years. I stopped taking it in 2014, as I was seizure-free. Within 6 months, my journey of pain (started in my toes) began. I never connected the two until about a year ago. In those 6 or so years, I was diagnosed with Fibromyalgia. Took Gabapentin (bad), Lyrica (not as bad).

When I finally got a correct diagnosis of SFN by skin biopsy (2 years ago) I reconstructed these events in my mind. It seems that Tegretol was controlling my neuropathy to some degree for 25 years. Actually I didn’t start having neuropathy symptoms - that was itching - until my 30’s.

I switched back to Tegretol a year ago. My burning pain disappeared pretty much immediately. I take 400 mg am, 600 mg pm.

Tegretol hasn’t stopped my SFN from progressing. I’m in pain pretty much 24/7, and now dizziness is a big problem. I’m weaker, have had to give up all my exercise except swimming, and now that is painful. But the trademark burning is pretty much gone. So it’s working.

I have no side effects from Tegretol.

Didn’t mention earlier I’m also on two antidepressants - Lexapro for depression, Effexor to try to calm those nerve signals. I’ve gained about 20 pounds in a year. I can’t pretend that life is good.

@julbpat
That's a good reason to take it. Hope the seizures are controlled. I thought you took it for Neuropathy.l
Jake

Do you know what % lidocaine ?