I would recommend doing the biopsy. After six years of searching, I felt such relief finally seeing on the report that I did actually have a reason for all the pain. No more skepticism from other medical practitioners. The biopsy is considered the “ gold standard” for definitive diagnosis.

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.