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.

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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

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

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 🍀

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

I am scheduled for the booster covid Pfizer shot on Wednesday and I have mixed feelings. Everyone I know has gotten it and no reaction. I was with fever and muscle aches after second shot only lasted a day. However since then I have been diagnosed with idiopathic axonal sensory motor peripheral neuropathy. I feel it in my feet stiff and partially numb. I also have been experiencing over a month violent migraine like headaches. All tests negative. Drs feel tmj and cervical arthritis. I am very concerned about getting the shot after reading all the comments. Is their any real evidence out there. Will be flying end of month to our new home in Arizona and I am around my young grandchildren so I do want to be protected. I worry either way. All these comments worry me to go ahead and get shot. Pharmacist didn’t have any information regarding neuropathy. Thankyou for any information that can be provided.