Living with Neuropathy - Welcome to the group

I am 81 years old and I've been on gabapentin for about half of the 15 years that I have had neuropathy. I have tried almost everything and 400mg gabapentin with 15mg of morphine is the only thing I have found that works. I take the gabapentin every 4 hours and the morphine every 8 hours.

What are the meds you are taking for neuropathy?

I’m not taking any medications for neuropathy since I only have numbness and a little tingling for symptoms. There are no drugs that help with numbness.

My name is Ruth. I have SFN and PMR. I do have sharp pains in my toes. At this point I have not been diagnosed with diabetes, however, my glucose goes up and down, not real high. The last time I had it checked it was 134. Cleveland Clinic diagnosed my SFN and a local Dr. verified my PMR. I've had a real hard time trying to find a good neurologist to treat my SFN and hopefully PMR too. I'm in the process now of trying a new Dr. but I couldn't get an appointment until the end of February 2024. I have lived in central KY all my life. I've also been having some problems with my fingernails coming off. I am a nail biter. They grow back, but I didn't know if that was related to the SFN or not. I'm glad I found a support group and hope this new Dr. is a keeper. My last neurologist cancelled my appointment with no explanation. I wasn't impressed with him anyway.

Hi Ruth @rllh5403, Welcome to Connect. It must be extremely difficult dealing with SFN and PMR together especially if you have neuropathy pain along with the pain all over from PMR. I've had small fiber peripheral neuropathy since my early 50s and have had PMR occurrences twice. I've been fortunate that my neuropathy symptoms are only some numbness and minor tingling in my feet and legs. The 2 occurrences of PMR were awful to say the least. I hope your new doctor is a keeper also. When you find a doctor that listens you have a winner.

The Neuropathy and Polymyalgia Rheumatica (PMR) Support groups have a lot of great discussions where you can read what others have learned and ask questions you may have. Here are links to the home page for each group where you can view all of the different discussions:
--- Neuropathy Support Group: https://connect.mayoclinic.org/group/neuropathy/
--- Polymyalgia Rheumatica (PMR) Support Group: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

Have you started a treatment for both your SFN and PMR?

No bc I haven't found a Dr. that knows how to treat it properly. Fortunately, I don't have a lot of pain. But I do have symptoms but I don't even know if they are related to PMR or SFN or not. Every time I ask my Dr. a question, he doesn't know the answer. He is treating me for the SFN. He gives me gabapentin, but that's it. I have incontinence, skin rashes, my nail come off, chronic fatigue, pains in my head from time to time to mention a few symptoms. I've just learned to live with it. I'm glad I found the support group. I'm learning a lot from other patients.

Does anyone here have balance issues as well as numbness? I have to hold on to something, walker or other device. Please advise.

Hi @rca, Most of us with neuropathy have balance issues including myself. I don't have any pain but do have the numbness. I use the railing on steps for sure and sometimes if it's available when I'm standing. You might find these discussions helpful:

--- Can neuropathy in my feet cause balance problems?: https://connect.mayoclinic.org/discussion/can-neuropathy-in-my-feet-cause-balance-problems/
--- Anyone try Tai Chi to help with neuropathy and balance?: https://connect.mayoclinic.org/discussion/anyona-try-tai-chi/
--- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

I have to hold onto a walker, shopping cart, pet stroller, etc. when I walk due to balance problems from neuropathy in my ankles and feet. Anyone here have to hold onto to something when you walk.?

Hi, @rca

I, too, have balance issues. No bothersome numbness, but lots of wobbliness as I try to go about. Have you noticed that you are especially unsteady after sitting for a while, as little as 20-30 minutes? That's one of the mysterious personalities of my idiopathic PN.

The only thing that helps me dispel this after-sitting wobbliness is not sitting back down but instead staying on my feet and moving about, but with added caution; I'm a "wall-walker," too! Continuing to move may not be of help to you or anyone else, and it may not be of help to me forever, but it's helping for now.

I wish you the very best in managing your neuropathy!

Cheers!
Ray (@ray666)