Living with Neuropathy - Welcome to the group

My husband received the Pfizer vaccine (both shots). He has been notified to come and get the booster. He is 85 and a former hospice patient. I received both Moderna vaccines and have no idea when I will be able to get a booster. i am 88 and have PN. I function at a a very high level both mentally and physically, live and take care of my self as I always did. I'm just holding steady until the Pharm. Co, and the CDC/FDA get it together for Moderna. I will be getting my Flu shot in a couple of days. Re PN: I have numbness in both feet & both knees, worse at night; relieved by a spray that contains, menthol and some herbs. It helps me to sleep. Feel better after walking. i only take 100 mg of Gabapentin at night. i will not take more because i seem to have gotten some balance problems, dizziness, and feeling of not being in control. I have not seen a neurologist. if what I have rad about PN, I can look forward to getting worse.

Good for you. I loved reading that you function at a very high level both mentally and physically. That is certainly my goal. I have Small Fiber Neuropathy (SFN) and quite a few cognitive decline issues. And yet, I find joy in every day. I just had my second Total Knee Replacement and am learning to go up and downstairs right now. Balance and stability are my daily exercise goals.

My life partner and I will get our COVID booster shots next Tuesday. I hope Moderna becomes available for you soon.

You mentioned the progressive nature of neuropathy. I can certainly begin to feel like there is no going back to a quieter time. We just need to make sure the treatments and medications continue to develop for us.

100 mg of Gabapentin sure is a very low dose. Does that ensure a good night's sleep? Do you have tingle tangles in your hands, wrists and arms? Gabapentin is the best for that issue. Unfortunately, it also makes me a bit fuzzy. What else have you found to be successful?

May you and your husband have happiness and the causes of happiness.
Chris

Hi everybody, I have peripheral neuropathy in my feet and recently I fell ill with an Upper respiratory infection. My fever went to 103 but I noticed that while I had fever my neuropathy pain subsided. I have recovered and the first day with normal temperature, I have noticed that the neuropathy pain and numbness has returned. This isn't the first time it has happened. About a year and a half ago, same thing URI with fever and no neuropathy pain. In fact, the one day side effect from the Covid shot, I had fever yet no neuropathy pain. Maybe it's an immune system working harder, who knows. Any similar experiences?? Wishing good health to everyone!

It sounds like you’ve made a good connection between things. I have read @ Various doctor and medical sites that people with CIDP perhaps also peripheral neuropathy have a hard time or their bodies have a hard time regulating body temperature. For instance I fall asleep feeling fine but if I get cold I don’t notice until I am freezing at my very core and find it very hard to warm up. That may or may not be helpful but I wanted to share with you.

You are saying Neuropathy is driving body temperature. I am saying body temperature is driving neuropathy, that is, the pain signals to the brain. Your story is interesting. Thanks

I wake up and put ice on feet! Only thing found to work!

My apologies… I’m saying neither… I meant to say that often people that have CIDP, my specific diagnosis, find it their body temperature fluctuates widely (to Say in a better way), meaning that they might be in a cold room with air-conditioning and yet they still feel very hot. Or perhaps the opposite is true. Or perhaps they sleep at the same temperature every night with the same covering, yet some nights they feel very hot and other nights they feel too cold. It’s a symptom of the disease. I experience it, others do not. Not just talking about my feet. And CIDP is a rare disease, any other type of neuropathy work independently I believe. There are several types. Good Luck 🍀

Thanks, good luck to you too. My real body temp was affecting my neuropathy. Strange isn't it?

Thank you ..
I’m glad yo find youl.
I have progressive idiopathic neuropathy .
I now am using a walker to cope with balance issues, and am coping with burning/ tingling, lightening strikes in my legs and feet.
I’ll be heading bavk to Mayo for more diagnosis and treatment.
I’m interested in learning from others about strategies and treatment experiences addresding this experience.
Thank you

Hello @blglaser, Welcome to Connect. I think you have come to the right place to learn more about neuropathy and what treatment options are available. There is another discussion that you might want to read through and learn what other members have share about their neuropathy journey and what has helped.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here are a couple of other sites you might want to take a look at to learn more about neuropathy and about other complementary and integrative therapies that may help with your neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

Here is a great site with some tips on preparing for your upcoming Mayo visit - https://patientrevolution.org/visit-tools
Do you normally write down any questions you might have for the doctor and take them to the appointment with you?