Increasingly Difficult to Accept Peripheral Neuropathy

Ha, ha, ha!

I have had peripheral neuropathy for close to five years. The worst part is that when you think you are improving, it turns out to be short lived, and PN hits you with some other kind of pain or symptom. My wife is always encouraging me to try this medication or try something like acupuncture. The medicines do nothing for me, and treatments like acupuncture do no better than beating myself over the head. What I do now is is anything that I can do. I had to quit softball because I couldn't run. Golf as it was too tiring to walk through the rough; pickleball and table tennis as I was afraid that I would go after a ball too abruptly and land on the concrete or floor. I have not given up though as now I play billiards. I get some exercise by walking around the table, and I can sit while waiting for my turn. For many years I have written a weekly column for friends and a digital newspaper. I can still do this. The point is that I try to adapt to what I can do. Barry

Hello @barrye, Welcome to Connect. Great advice, I also believe in taking it one day at a time and living the best I can. I shared my neuropathy journey in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

I fortunate in that my only symptoms from my small fiber peripheral neuropathy is some numbness and tingling in the legs and feet but I do take supplements that I think have slowed or possibly stopped the progression that my neurologist told me to expect. The Foundation for Peripheral Neuropathy has a list of treatments that others have found helpful here - https://www.foundationforpn.org/treatments/.

You mentioned acupuncture didn't help. Have you done any research into other types of treatments?

I have tried a number of other treatments, topicals, prescriptions. I have obviously not tried all of them. I have been to Mayo and the Moffitt Cancer Center. I have tried exercise, worked with physical therapists etc. Once my doctor suggested shots with material from placenta - not stem cells. I have a massage type machine that works on my legs and feet which helps slightly. I have found nothing that really works. I even discussed with a pharmaceutical firm entering their study on PN. However, they would not take me as I do not have diabetes. My pain has not progressed to the point that it has in some. It is worse late at night after I have slept some. During the day the worst part is the tingling in the legs and feet. My walking is inhibited, but the worst effect is on my standing. If I just stand, I become really uncomfortable and have to sit. Moving around is less bothersome.

barrye - Well, you certainly are not alone and many of us share your symptoms. I share some of your issues, mainly my balance and lots of numbness from below knees to feet and walking is becoming increasing difficult. I do have knee issues and docs won't do replacement because if I were to trip or fall and land on knee, not good. The "jell shots" help to a degree. I too have been to Mayo and other top notch medical institutions and the cause....shrugged shoulders. For quite some time, that bothered me the most. The not knowing. What's next? I've accepted I have axonal sensory motor PN and now have committed myself to doing what I can and like many with PN, we have those good and bad days. I try my best to take advantage of the good days. Not as good as I like but I'll take it. Be safe. Ed

Just need to talk. I have PN as a result of Chemo for Pancreatic Cancer. Lucky ME! I am in the 10%!!!
Truely Grateful! Now after 2 years, I am just Totally bummed out that I cant walk 1 block without having to sit down! I have tried all the drugs my doctors have told me to try with No results. In fact it seems to be getting worse. I have excellent doctors and my son-in-law is a local surgeon so I have an "In" as they say. Admittedly, I am 80 years old. But prior to this I looked and acted years younger. Does Anyone have any suggestions?

Hi @jakesgram23, Welcome to Connect. I'm glad you popped in to talk. Lot's of us on Connect with neuropathy experience. I'm 80 and can't walk very far myself although. I know it can be a struggle sometimes. Daily exercise using a recumbent exercise bike and row and ride machine that helps me do squats keeps me going. I'm still trying to build some muscle mass that I've lost but it's almost a losing proposition although I keep trying. My best suggestion for you is to learn as much as you can about your condition and what lifestyle improvements may help. The Foundation for Peripheral Neuropathy has a lot of good information that might give you a start.

--- Foundation for Peripheral Neuropathy - Living Well: https://www.foundationforpn.org/living-well/
--- Chemo-Induced Peripheral Neuropathy Webinar: https://youtu.be/eNkDf9ezXFo

Do you have pain with the neuropathy symptoms?

Hi @johnbishop ,
Thanks for the welcoming post. I currently ride a tricycle weather permitting, I also have a rower & a stationary bike. I do Pilates & a bit of yoga. I've always been blessed with great flexibility. I'm searching for something that perhaps someone can give me suggestions that I haven't already tried for relief of the constant pain & discomfort.

Some folks have found changing the type of shoes can sometimes provide a little relief. Have you seen the discussion on shoes when you have neuropathy?
--- Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/

@johnbishop Thanks I've tried many different shoes. I mostly wear sneakers. I found that if they are a bit too large it's better & of course I Have to wear socks day & overnite. I currently have an appointment with a Homeopathic Dr at the end of Sept. out of desperation I decided to "bite the bullet". I'll report it here of course. Surely I am NOT done yet!!! I may be 80 but I have Lots more living to do!