Skin Biopsy for Neuropathy Question

Low dose naltrexone helped me greatly for about a year.

@elenal
I had burning and pins and needles in my feet and had a skin punch biopsy of calf and upper thigh and it showed severe small fiber nerve damage. The signal to your feet is coming from nerve roots from your spine down your legs to your feet.

Thanks for sharing that. It makes more sense now, because I don’t have length-dependent small fiber neuropathy. They may have told me this, but it was years ago now that I had the biopsy.

That was the first positive result I had in six years. I still remember where I was when I got the call, and how I felt. Maybe your day is coming. I had biopsies on both legs, at the ankle, knee and thigh. Only the ankle was abnormal then, but my neurologist confirmed my suspicions that at least the knee would also be abnormal now as it progresses.

I get relief from Tegretol. My story is elsewhere here on MayoConnect, if you search under my name.

At the time, I had tingling in my feet and calves, but it actually started in my calves, so it wasn’t length-dependent. I also had some tingling in my arms. Then, it progresses to numbness (like an absence of sensation) in my calves and some patches in my thighs. Intermittently, I’d get shooting or burning pain.

I was offered the usual things: Lyrica/gabapentin, Cymbalta, lidocaine patches, capsaicin, etc. But I later learned I have central sensitization and I’m very sensitive to medications, plus being someone with chronic pain conditions, it personally aggravates me how often physicians want to throw gabapentin at a pain problem no matter what it is (though I understand it works for some people), so none of those options were a good fit for me. I ended up trying acupuncture (which made me feel good, but I’m not sure if it helped the neuropathy) and applying peppermint oil to my legs at night (relaxing and smelled better than Icy Hot or similar products).

I left things as they were and continued with exercise, learned about meditation and gentle yoga. I’m not trying to sound “woo-woo;” it’s something I was interested in anyway. I did a deep dive researching the most effective chronic pain management and read about integrated chronic pain programs that incorporate exercise/PT, sleep hygiene, mindfulness, being creative and out in nature, etc., so I sort of tried to integrate things on my own as I could.

Eventually, I developed an autoimmune arthritis—which is now suspected to be the cause of the neuropathy. It took 3 years to get the autoimmune condition correctly diagnosed and treated, which led to me developing central sensitivity syndrome (your nervous system becomes hyper-responsive to stimuli, causing a disproportionate amount of pain), which led me to a PT who taught me many of the same things I’d read about in integrated chronic pain management.

She used an approach called Graded Motor Imagery, where you use images of the most painful body parts to help retrain the brain to have a better connection with that body part and it improves pain over time. The starting point for me was using an app for right/left discrimination (I use the Recognise app for knee, feet, and hands), and to my surprise, over time it got better. We were doing it for my limb and joint pain, not the neuropathy, so I wasn’t expecting it. My baseline pain now is the absence of sensation in my calves, but I have fewer episodes of tingling and none of sharp or burning pain.

I also take LDN (low dose naltrexone), but it does more for my fatigue than it’s done for my pain.

I don’t regret doing it, because with the kind of person I am, I’d always wonder, you know?

I hope for you that it doesn’t progress and we can be in the 30 or so percent of cases where it spontaneously resolved or improved >_< .

I can relate a bit to what you experienced…three years later (too many years later, if you ask me), I was diagnosed with POTS, an autonomic nervous system disorder (which is the condition with an objective test) and an autoimmune arthritis. Small fiber nerves affect the autonomic nervous system too, so they suspect it’s some kind of autoimmune induced neuropathy. It did feel validating to get that POTS diagnosis.

I had nerve biopsies in February, they took samples at ankle, knee, and hip locations. The results were that I most likely had small fiber neuropathy.

In addition to burning, tingling, prickling, thumb tack stabbing pain and numbness in my feet, later developed leg cramps, particularly upon walking in the morning, dry itchy eyes, dry mouth, hypersensitivity to cold, etc.. The Neurologist read off a list of the above plus sweating, constipation, etc. which explained why I no longer confident engaging in my normal activities and why I felt so sensitive to cold.

The neurologist prescribed Cyclobenzaprine, a muscle relaxer commonly known as Flexeril to calm the nerves. After one night, it felt like a miracle.
Though it does not address the root cause of insufficient oxygen getting to the nerves to rebuild the nerves, I am out of pain and feeling my normal self.

Concerning the root cause of rebuilding the nerves, I have been seeing a chiropractor certified in neuropathy since August 2023. I do twice daily home therapies consisting of 30 minutes of Rebuilder (electrical stimulation of my feet) and 30 minutes of Anodyne Therapy (ultraviolet light under my feet and behind the calves); Blueprint supplements of Greensberry and VasoPro; and InflammX. Diet is very important as well.

The first three months I saw the chiropractor twice a week for decompression therapy, balance treatment, and subluxation (adjustments). Thereafter I see the chiropractor weekly. This will lessened over time.

I hope this information is helpful! Each and every day without pain is a blessing.

If you have not had a biopsy to diagnose the type of neuropathy you have, I would ask the neurologist to perform them. If your neurologist does not want to do perform biopsies, you might consider a second opinion elsewhere. Best of Luck and God’s Blessings!

smueller19:
I have had positive results with the same electrical simulation and red light therapy you have written about. The program is through a chiropractor also. It seems M.D.'s only believe that there is nothing that works and drugs are the band-aid. I have regained balance, much better sensation on the bottom of my feet and am not keep up at night in pain. I walk barefoot on a hard floor now and can feel a grain of sand on the floor. My situation is not fixed but is now more managable. I am also experimenting with putting my feet in a cool to cold bucket of water to get more cirulation going.

That is awesome! So glad you are feeling better. What city is your chiropractor? Which type of neuropathy?