Positivity only fellow friends!

@mikead63
At first I disagreed with your statement "that it will probably get worse not better." Although mine did get worse for awhile as far as the condition itself, going to stage 4, but as far as symptoms are concerned it improved greatly. The pins and needles, aching, burning, stinging, stabbing, and all the other horrible pain sensations eventually all went away and were replaced with numbness. Even
though I have complications of neuropathy induced E.D., bladder & bowel issues and leg weakness. I feel my neuropathy symptoms have gotten worse but also significantly improved over the last 40 years. I don't assume any of my conditions will necessarily get worse. Just because an illness is getting worse, that doesn't mean it will always continue to worsen. Like my neuropathy I also have epilepsy for almost 60 years, 45 of those years my seizures were uncontrollable but at age 59 after 13,000+ thousand seizures for whatever reason my seizures stopped as long as I didn't miss my medicine. So regardless of how bleak the future may seem thankfully conditions don't always continue to get worse. I believe when we have a negative attitude it does far more harm to our bodies.
Take care,
Jake

I would like to put a plug in for a discussion started by @ray666 that is similar and might be helpful for all of us that go back and forth with our various neuropathy struggles.
-- PN: From Anger to Acceptance - https://connect.mayoclinic.org/discussion/pn-from-anger-to-acceptance/

Staying positive is definitely one our best medicines 🙃

This is the first reading of my day and I agree 100% about the negativity. I go back and forth from being very positive then get into my "stinkin thinken" mood! I'm going to be positive today, no matter what! Thanks Jake!!

Not sure what the cause is for your neuropathy. My cause is idiopathic so who knows. It has progressed slowly over 8+ years. I'm lucky I don't have pain and although my feet are annoyingly uncomfortable with tightness of skin and feeling like tight compression sock half way to my knees I am able to exercise at high level daily although I'm 71. I do step aerobics or jog daily. The more I exercise the better I feel. Not sure what your symptoms are but keep moving and don't despair.

I have suspected PN of my feet and lower legs , burning sensation. It all started about the time I started taking Clonazepam for depression and anxiety. Has anyone else had this side effect from Clonazepam.

My neuropathy has improved over time. I did 6 months of accupuncture that took care of the pain. I still have numbness, tightness overnight and occasional burning. I wear barefoot shoes always now and apply magnesium cream mixed with castor oil daily - those things have improved the numbness a bit and my balance (along with yoga).

I was diagnosed with Idiopathic peripheral neuropathy and restless leg syndrome just recently. The burning and pain in my feet at night was horrendous. Taking gabapentin before bed has settled that down. My feet also feel like I am wearing tight compression socks. I am 78 and have been an avid weight lifter my whole life and I continue except with lighter weights and more reps. I'm not a jogger but I am a walker. I agree that the more exercise the better I feel! Keep moving is definitely important. My movement begins in 15 minutes with 1/2 hour of fast dancing and movement in my exercise room with my top tunes of the day!!

Well, given that my idiopathic neuropathy was a sudden attack that was crippling and put me in a wheelchair for 6 months and limited my hand usage as well, I’d have to say I got better. The ability to walk again, drive, and be reasonably independent was because of extensive physical therapy that was worth every minute of it. Gabapentin has helped make pain and cold/heat intolerance very tolerable now.

While my recovery was far from complete and plateaued a few years ago, I definitely got better than I was. I wanted to live and maximize my happiness and family needs, so I gave it all I had and had great leadership and advice from folks in this forum. As everyone else has said, we need to stay active and keep muscles strong. I still get a round of PT every year to make sure I’m doing things the best way possible for my health.

WoW!!! Good for you! Keep it up and keep in touch!

Hello!

I believe I'm alble to report positive results. I was diagnosed with large-fibre PN by my first EMG in the summer of 2022. At the time, I heard my neurologist speak the two words we least want to hear: "incurable," and "progressive." Since mine was large-fibre, meaning no or minimal pain, the neurologist went on to say, "Ray, there's really not much I can do for you (I appreciated his honesty), other than to advise that you keep your body in motion."

I took his words to heart. I created a simple mneumonic: "KIM," meabing Keep It Moving. Whenever I catch myself falling into a lethargic state, I'll say aloud, or jot on a scrap of paper: "KIM," and like magic, I'm up and moving, whether to do some prescribed isometic exercises or just to tidy up the kitchen, long enough to know I've hit a lick any any possible PN progression.

Have I found any proof in the pudding? I have. I had my second EMG a few months ago, and when it was done, the neurologist said, "I see no progression, Ray. In fact, there appears to be some improvement. Whatever you've been doing, Ray, keep doing it." And what's that? It's "KIM."

Cheers!
Ray (@ray666)