Living with Neuropathy - Welcome to the group

Thank you I had the fatigue also plus fever for a day almost like i had the flu with the second Pfizer shot

Have you seen a Physiatrist?

Hi Betty @bettywalbridge, Welcome to Connect. Sounds like you had similar side effects from the Covid vaccine that I did. I haven't had my booster yet but need to schedule it soon. I also have small fiber peripheral neuropathy with no pain, just the numbness and some tingling. I posted my story earlier on Connect in another discussion here -- Member Neuropathy Journeys - https://connect.mayoclinic.org/comment/310341/

You mentioned in your profile that you just retired last year at age 85. That is really an accomplishment and especially that you stayed active and going the gym regularly. You also mentioned that you are going less and less to the gym. Do you mind sharing your favorite things to do or tips on staying active?

Hello ~ You mentioned you have small fiber peripheral neuropathy with no pain, just the numbness and some tingling. This is the same for me. Could you share what daily challenges you have? For me it is walking and balance. I had to give up driving and need assistance walking when I'm out. Daily activities such as housework or putting out the trash are challenging for me. Thank you.

Hello @retired123, My biggest daily challenge is walking and balance. My balance is not terrible but I have to be careful when I first stand up and take the first few steps. I have difficulty walking more than a block or so. I think I have early stages of bent spine syndrome (BSS) or camptocormea where i lean forward when walking. I had always attributed this to my lower back issues and don't believe it's part of my idiopathic small fiber PN. I still am able to drive at 78 and I try and do at least 30 minutes daily on my recumbent exercise bike along with some exercises using some tension bands. I purchased some Nordic walking sticks which help with balance and staying more upright when walking.

@hopeful33250 shared some Carol Michaels Fitness videos that have a variety of good exercises that are easy to do at home that you might find helpful for strength and balance -- https://www.youtube.com/c/CarolMichaelsFitness/videos

Hi I am In so much pain in both my feet. Unbearable. Looking for some relief

Hi everyone, may I just ask a question. I suffer from Motor Neuropathy in legs and feet and hands. I have had this condition for a number of years, and as I think happens, it is gradually getting worse, the nerves are totally dead. However, I have found over the last few months that when I first get up, i feel totally exhausted. Obviously, I do not sleep well because of the discomfort, but this exhaustion is totally over the top. I drag myself around for a few hours, but then, as the day moves on, I begin to feel less shattered. Obviously, walking is a problem as I am 82 and have had some horrendous falls (fractured pelvis last time) and I don't expect to feel as I felt when much younger, but standing is also a huge problem. If anyone has any tips or ideas as to why this is so, I would be most grateful. It is now 2.30 p.m. and I am beginning to feel much better, and this is always how it goes. I do notice how purple my feet and ankles are when I first get up, and use a leg massage machine for 15 minutes. Could it be poor circulation after laying in bed? Any comments, suggestions would be most welcome.

Hello @mhdavellis, Welcome to Connect. I'm sorry to hear you haven't found much relief for the pain in your feet. Hoping you will be able to find some help by learning what other members on Connect have shared helps them. There is another discussion you might find helpful.

-- Small Fiber Neuropathy, Pain + Seeking Solutions: https://connect.mayoclinic.org/discussion/small-fiber-neurapthy/

Also, for more information on neuropathy and treatments here are two excellent websites:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Are you able to share a little more about your diagnosis and any treatments you have tried or are currently using?

Hi Helen @helenwalker, It does sound like poor circulation according to what I've read. Here's a little more on the topic.

"Purple feet are a sign of a circulation problem that can be potentially serious. When circulation in your feet is healthy, cuts heal quickly and your skin retains its natural color. Blood reaches your feet through a network of arteries, which are the blood vessels that carry blood from your heart." --- Purple Feet: Causes, Symptoms, and Treatments - Healthline: https://www.healthline.com/health/purple-feet

Have you discussed your symptoms with your doctor?

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.