Next steps and how to cope with pain?

Hello @dejavu, Welcome to Connect. It's really the pits to have to wait 8 weeks to see a neurologist but that's unfortunately more common than us patients expect. My neuropathy is mostly in my legs and feet and then no pain, just numbness and some tingling. There are quite a few members who have mentioned neuropathy pain in their hands and feet if you want to look through the discussions and comments while you wait for others to respond. Here's a link that lists the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20pain%20in%20hands%20and%20feet.

Hoping you get some more answers when you see the neurologist. In the mean time, I would keep learning as much as you can about neuropathy and what treatments may provide relief. One of the better sources of information is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/.

You mentioned your feet started feeling cold, tingly and numb similar to your hands a few months later. Wondering if your doctors checked your blood circulation. Do the hands and feet look blueish?

I've waited many months for an appointment with a neurologist. The referal was made in early December and the appointent is July 17.

Thanks for those links! I was not tested for circulation, but my hands and feet look normal. Sometimes when my feet “feel” cold they actually aren’t.

It’s so hard to wait. Each step has taken several months so far. I realize how lucky I’ve been to be healthy until last summer.

My neuropathy is from a combination of Waldenstroms macrglobinemia, with amyloidosis. It is very rare and most primary physicians will never see it. Carpal tunnel surgery biopsy confirmed for me. If you don’t find answers with neuro, seek out an amyloid center of excellence to search for answers.

I'm sorry you are dealing with this. I have had single fiber neuropathy for 8 years now. I've had multiple other health issues going on and I got fed up and forced myself to start walking every day in Fall of 2023. It hurt my feet but it really helped me on my journey. I know you mentioned your hands...Maybe you can find some hand exercises? I'm not a doctor but I think improving circulation is key. Maybe you can google "exercises to improve circulation in hands." or where ever this is bothering you. To give you hope, 2.5 years later, my neuropathy is a lot better and I know longer have pain and it does not hold me back or keep me awake like it used to. It does resurface if I am a couch potato for a few days so that is my motivation to get moving. Physical Therapy may help too. Finding the cause is key. I was never able to find the cause of mine, but maybe due to my thyroid removal and cancer treatment over the last 20 years.

I hope this helps a little.

Linda

Linda, you are on to something in that exercise is key. We were born to move. I notice if I sit too much my symptoms get worse. I still do not know what I am dealing with but hope to find out. As for hand exercises there are plenty of videos and TV exercise shows that model hand movements.

Thank you. I finally was referred for physical therapy but have already been doing CT hand exercises for months. I have also, like you, started to be intentional with walking every day. I’m still hopeful something will help.