Dose anyone else feel like neuropathy is taking over their life?

@annregister yes and I am still searching for a definitive diagnosis which seems unlikely after the latest round of testing. I refuse to take gabapentin, lyrica, cymbalta, elavil, etc. as I need to continue working. Pain escalates throughout the day from mild in the AM to exceeding uncomfortable in the evening. My wife no longer wants me to drive as of course the neuropathy attacked my “good” side, the other side being affected by cerebral palsy. It is the straw that broke this camel’s back. I thankfully work from my house and almost never leave the house. I hope you find some relief .

I should also add that I am trialing low-dose naltrexone (LDN) to see if it lowers the intensity of the pain. It was something I decided I wanted to try and got a prescription from my PCP. When I saw the neurologist a few weeks ago, he also suggested LDN. It doesn’t seem to have any cognitive side effects but it is too soon to say whether it is working or not.

What was your Raynaud's like? I thought my son and I had that for decades with the sudden swelling, burning, itching, redness and white polkadots on our palms and soles. Elevating hands and feet made it go away. But it was never connected to cold like Raynaud's says so I'm not sure exactly what caused it other than our HNPP. How did yours come on and how long was an episode? What did your hands look like during an attack? Just curious.

I also can't take narcotics. They do nothing for my pain, just cause side effects. I'm allergic to all OTC NSAIDS so there is nothing I can take for pain even after surgery or with my kidney stone. Now I have cancer. Scary, especially since neuropathy tends to enhance pain signals -- no off switch on those. I haven't tried any of the neuro pain meds like Lyrican or Gabapentin since my pain is fleeting, but I don't do well with meds in general. Sorry to hear so many people say those didn't work and/or had very undesirable side effects. I may need to try them one day if neuro pain becomes constant. Hope you all can find your magic solution.

I had been in the same boat with you for many years until I was introduced to a spine stimulator. I was using several different topical ointments that gave me some relief. The best one I have found so far is CVS' lidocaine lotion and I still use it even though I've had a stimulator implanted earlier in the year. Like you, I sometimes feel like that all I ever do is deal with PN. The condition has killed my social life except for a couple of friends and my family. I'm 77 and I've been retired for 12 years. I never thought I'd miss working until I no longer had a job. Or I should say, a paying job. Now my job is taking care of my feet and hands. I'm still waiting for my first paycheck to arrive.

Regarding narcotics, what have you tried? I'm taking a combination of 10mg of oxycodone and 5mg of methadone. Along with 3200mg of gabapentin each day, they are fairly effective at giving me some relief without making me feel like I am in some kind of stupor.

I wish you the best of success as you look for some answers.

I’m in constant pain. Nothing helps.

Raynaud’s is more pronounced in my feet but also in my hands on occasion. Swelling, burning, and the color variations (red,white,blue). At first, the doc said Covid Foot????? Then when blood work came back she said Raynaud’s. Not the Phenomenon, but the disease. The phenomenon is related to an autoimmune. The disease is on its own. Mine seems to get worse when my pain level from neuropathy is over the roof. Doc just said to wear gloves and socks. Episodes last around two-three weeks. Doc seems to think the Covid vaccine had something to do with Raynaud’s peaking through. Sorry to hear about your cancer diagnosis. I to, do not take any medication for pain. It’s tough but I do not like the side effects.

I had a bad side effect from gabapentin. My cognitive abilities were shot. I literally could not think or process information. And, I’m a first grade teacher. Not a great combination. I’m supposed to see pain management at the end of the month. I’m hoping we talk about a stimulator.

I am right there with you. I feel like some doctors have given up on me. I’m so sorry you are in so much pain.

I feel like I’ve tried everything. One doctor said to me…he was a meds kinda doctor. He was going to try different kinds of combinations of drugs to see if he could find one that worked for me. Ugh…..I feel like I was a Guineapig. You said you are trailing another med. good luck.

That sounds awful. I just looked at images of Raynaud's online and that looks different than what was happening to me and my son. Our episodes were gone in minutes if we elevated our hands and feet. The color variations are pretty crazy. I don't remember ours involving fingers and toes, just palms and soles. Thanks for your response.