Optimism

@ericmm
Hi Eric - My Idiopathic PN (large fiber) comes with pain, and extremities can get very cold (sometimes very warm). It was a very sudden onset (10 days) with an infection. I initially lost all ability to walk and the use of my hands, but PT did wonders getting me out of the wheelchair and getting pretty well balanced. I use a walker today and relieved for that. I am prescribed Gabapentin which I find, taken on schedule, works well to keep the pain very minimal now and keep temperature discomfort tolerable. I have found nothing though that helps the numbness and tingling!

I have tried many of the suggestions here for vitamins and supplements. Over time I found that the sweet mix for me is to take B12 and Magnesium supplements (and I’ve taken a One-A-Day multivitamin for years). I had to find the right dosages that worked for me, as too much (esp Mg) actually made me weak. What I’ve learned most on this forum is that there is no one formula that works for everyone. It takes a lot of trial & error! Debbie

@dbeshears1 thank you for your message, I took gabapentin 700 mg 5 times a day, stopped that switched to Lyrica 100 4 times a day, it really doesn't do anything for my shooting nerve pain to my feet, I started taking r-ala , after a couple weeks my nerve pain almost disappeared but now it has come back a little bit less than it was before trying some different ala , you are correct it's every person has a different story but a lot of good information thanks again and I hope you find something that helps

Regarding the use of vitamins and supplements, it really is an unknown area in terms of what is effective and what isn't. Plus, every individual is different. Some may suggest taking this, others suggest taking that. Here's my suggestion, do the research. Search a ton of sites by typing in something along the lines of "which supplements and vitamins are most effective in treating ......" Then, find the common denominator choices that seem to pop up in most of them. You'll most likely find a theme. Then, read up on each supplement or vitamin and decide if its something you want to explore.

I am not optimistic. Tje neuropathy is destructive mentally and physically and nothing helps- sadly

@dbeshears1 thank you so much Debbie, I am on 100 @ 4 times a day of Lyrica, I'm Also taking ala (alpha lipoic acid) I Just read about ldn I'm going to my neurologist today, I'm going to bring it up, thanks again
Eric

Optimism is a funny thing…. 2 years ago I was optimistic that a heart transplant would give me back the life I had before suffering from heart failure for a couple of years. When it became an emergency unplanned transplant, I was critically ill and on life support for 3 weeks. Luckily, I pulled through not knowing that with total organ shutdown and being on life support for so long comes a little thing called Critical Illness Polyneuropathy (CIP).
While I received an awesome heart (thank you to my donor), I am still not able to do the things I could for before. In fact, I can do less and I live with chronic pain everyday (like all of you). I know that I will not “get better”, but I am optimistic that I will continue to get stronger, both physically and mentally. I am also optimistic that I can be a role model in the polyneuropathy world and the transplant world. Please register to be an organ donor. There are many, many lives out there that can be saved by one single check in the box…..

I am on a waitlist for disabled housing. The waitlist is 5 to 10 years long. Hence I will be homeless. I can barely walk and the space between bowel movements grows farther apart. My toes are paralyzed on my left foot the muscles are completely wasting all over. My feet kind of feel like rubber flippers yet stiff 24 hours non stop. My arms and calves are toothpicks. So no I do not have optimism or false hope. What I do know is Im dead once homeless in my condition. Ive talked to multiple social workers there is no help. Disability pays below the poverty line. I can no longer work. I havent run into anyone in my situation yet and as far as I can tell no one cares. But there are many disabled homeless. People tell me to stay positive. That does not help. But when I ask what do I do or where do I go its always “I dont know.” This is why Im not optimistic. I’m allready part of the “hidden” homeless. Its minus 40 celcius in the winter where I am. What I do understand is how this happens to people….I know writing this is in vain but I cannot sleep. I cannot “just rent a room” in a strangers house when I can barely walk, use a shower chair, etc…..Now imagine trying to live in a shelter and on the street with disabling neuropathy. Do you know how that is?
I don’t even know why I am writing this. I guess its to let people know it isnt as simple as just be positive or be optimistic.

Edit - I did not notice Tammies post above mine when I wrote this and considered deleting this but will leave it up in case someone ever finds them self in a similar situation. Joining this forum is/was my last attempt at trying to find help with this disease

Good morning, Tammy @tammy65. What an inspiring post to read at the top of a new day! Thank you for taking the time to write it. A thought I had when I'd finished reading your post––for the third or fourth time––when you say, " … I am still not able to do the things I could for before," I thought, "Possibly so, but what you are able to do––and your post is evidence of that––is so much more valuable to the rest of us!" So again, Tammy, thank you! I wish you long, full, and deeply satisfying life! –Ray (@ray666)

Has anyone done physical therapy and noticed any improvement in their peripheral neuropathy/ I want to do a trial of a spinal cord stimulator, and the pain doc's office told me that I must try PT before I can be approved for a SCS. Exercising at home usually leaves me in greater pain.

@heisenberg34 I’ve used PT for neuropathy balance issues but not as a pain or numbness treatment.