Living with Neuropathy - Welcome to the group

@texasblooms - it completely changed my life. Before it happened, I was a runner, mountain biker, and fitness instructor. In addition to the physical challenges, it’s been hard trying to figure out who I am now. I am guessing this is the same for everyone. Tell me about yourself….

I have Neuropathy. The pain at night is excruciating. It doesn’t come on every night but more so than not. My legs feel like they’re twisted into a pretzel. The electric shock I sometimes experience is more than I can stand. My legs will cramp sometimes from the thigh to my feet. The bottom of my feet have felt numb for years and feels like I’m walking on rocks. I’ve seen a doctor for this where they did that test of poking needles in my feet, which I couldn’t feel until they got to my lower calves. The doctor said all I could do for this is exercise. I’m a very active 67 year old female, so don’t believe that’s the answer. I’ve had this for years. I also have chronic insomnia. Falling asleep and staying asleep. Some of the medication my other doctor gave me, made my Neuropathy worse. I had another doctor tell me it was restless leg syndrome, I’ve not gone back to him. This is the most painful experience. My doctor put me on Belsomra for sleep, but at first, I’d still experience it. For now it’s calmed down a bit but afraid every night it will come back. For the last year, I’ve constantly told my doctor, PLEASE, don’t put me on anything that causes weight gain, no anti-psychotic drugs, just something that gets me to sleep and stays asleep without the severe leg cramping that puts me in tears. I d appreciate and help. Thank you

I have had lower back and buttock pain since 2016 due to a ski fall. Neuropathy symptoms like burning along the backs of both legs and into both feet appeared in early 2025. Nothing has helped for any of the afore-mentioned pain symptoms.
I am wondering, has anyone here on Mayo Connect had success in controlling at least some of their pain with a spinal cord stimulator? Looking forward to your responses, either way. Thank you.

I have had restless leg syndrome for 65 years.
I am 70 now. Started at a very early age. Used iron supplements for years and they worked...until they didn't. It lasts for hours the RLS. Asked Dr for help and she prescribed Gabapentin 300mg then 600mg 2 times a day 2nd week. 3rd and 4rth week 3 times a day.
I haven't had RLS since the first day! It has a lot of side effects and I'm hoping to only take it twice a day. Going to try not to take 3 times a day. It works so well that I thought this is too good to be true. Calmed my anxiety and helps me relax so I sleep better.

I take pregabalin 300 mg for Peripheral Neuropathy. It came on very quickly when I was told I did not believe it, a when for a second opinion I was told by a doctor in Europe that dose was too high for me I am 5ft 5 inches 110 lbs, as I have balance issues That is why I refused to take Pregabalin during the day as I wanted to function like anormal person. I use a walker and told eventually i will be in a wheelchair.
I was very active before skiing hiking, so I feel like I am now under house address.
I tried 200mg the pain was unbearable. I have pain from my scalp to my feet, I don't have diabetes, I have Sjögren’s and celiac disease. I am the only one in my family with this disease i had genetic testing Delighted to find out my children will not inherited this disease. I have started to take my pregabalin earlier around 3:30pm , the pain is coming on earlier. Doctors could never understand why for years I feel no pain during the day .I think it is because I am moving around. I cannot move 24 hours a day. I still have pain I have learned to live with the pain Doctors have told me there is really no food medications for neuropathy.I am taking 2 immune globulin infusion twice a month for 3 years I can''t see or feel any difference , maybe it is slowing down the disease and helping the pain. For 3 months I was terrible in pain, unable to sleep I felt my prescription for that 3 months was defected or contaminated. Now I only see a NP never get to see my doctor it is like you are written off.

@tammy65 I hear you loud and clear! I am very sorry to hear of how your life has changed... for the worse. Six years ago I was cycling 30-50 miles a week. Skiing several times a week. Working around the house, etc. My pain was well controlled with some drugs and a spinal cord stimulator. Then, suddenly, all my pain returned. No more cycling. Eve a pain pump has not helped. Be your own best advocate! Search for treatment options. Try non-invasive measures first. Then, more invasive treatments like spinal cord stimulator, pain pump, Dorsal Root Ganglion, among others. Don't give up. God may have extraordinary things in store for you, my friend.

@heisenberg34 - you are an inspiration! If you don’t mind me asking, what was the source of your pain? How are you doing now? It breaks my heart when I hear of lives being changed by pain and or disability that is out of our control. Apparently, we’re supposed to trust that this experience is preparing us for something amazing that hasn’t happened yet (Mel Robins). Until then, I am seeking all options available to me to make life better everyday. All the best….

@tammy65 I fell skiing back in 2016. Severe pain in lower back and buttocks. SCS helped tremendously, dropping pain from a 7 to a 2. Stopped working in 2021. Slowly more pain developed, going down the back of both legs and into both feet. Had a pain pump implanted in 2023. Has not helped except for one day about a year ago. No one can explain it. Going for a trial of a new SCS. I am still better off than many here on Mayo Connect. Thanking the Lord for that. Pray that today finds you in good spirits.

@heisenberg34
Thanks for sharing. Good luck with the new trial. Let us know how it goes 🤞🏼

My name is Charlie. I’m 88 years old and have been dealing with PN for more than 20 years when I first noticed it. I came to Mayo years ago but was advised that it was progressive but “probably wouldn’t cripple me.” Gee thanks for that. It has progressed from my feet to my lower legs, to my arms, and now to my upper body where sometimes it feel hot and cold at the same time. I’ve spent a lot of time and money trying various “treatments” but have not found anything that helps. It is worse at night and early morning and gets better as the day progresses. I take two Tylenol PM tablets before I go to bed and they usually help me sleep thru the night. I use mind control to ignore the pain. Any suggestions will be appreciated.