Let’s have a chat about what if anything works to improve your life wi

Posted by rybren @rybren, Apr 22 7:39am

Many if not all of us with idiopathic neuropathy have seen hundreds if not thousands of Dr’s for our neuropathy. So what really has improved your life? Be specific to help all. There are more companies selling us crap that they claim will help. Seems an honest discussion about what really has impact is needed. For me, I have stopped seeing specialist as it has not proven successful. Still see GP for Gabapentin RX.

So let’s get into the reality of what is working. For me it is not seeing more Dr’s. So let’s help each other with what has really worked for you so we can all learn. Maybe we can find some comfort for all.

Interested in more discussions like this? Go to the Neuropathy Support Group.

kathieb48 | @kathieb48 | 11 hours ago

In reply to @mafalda "Exercise, Exercise, and exercise! it brings your legs strong again!" + (show)

I've started pt and get on the treadmill. Hopefully that will help strengthen my legs. I also do Tai chi which helps with my balance. I just have to figure out how to enjoy and live my life with this condition. I'll get there!

Ray Kemble | @ray666 | 10 hours ago

In reply to @mafalda "Exercise, Exercise, and exercise! it brings your legs strong again!" + (show)

Hello, Mafalda (@mafalda)

I'm another PNer whose chief complaint is poor balance and leg weakness. Both symtoms were worsened last spring when I came down with a septic infection, rendering me bed-ridden for most of last year. I'm a great believer in exercise, and I have a PT helper (although we're currently between insurance-approved episodes). I'm wondering what your experience was in recovering leg strength. Was it as maddeningly incremental as it has shown itself to be for me? Friends have told me not to expect a recovery overnight. And I don't. Nor will I give up trying. But I'm always interested in hearing what others' experience at recovering leg strength was like.

My very best wishes!
Ray (@ray666)

Mafalda | @mafalda | 7 hours ago

In reply to @ray666 "Hello, Mafalda (@mafalda) I'm another PNer whose chief complaint is poor balance and leg weakness. Both..." + (show)

Hi, I have been dealing with CIDP for about 5 years now. I had a crisis on 2023 that got me bed bounded, I got out of it with Prednison, Ivig transfusions, etc. but, the treatment that worked the best was physiotherapy. I cant emphasize enough how exercising the legs and arms made them strong and resistant to weakness. Strength brought balance. I was also lucky finding a physiotherapist that would strong massage the legs prior to exercise. That was a recipe for success.
But, I'm talking of serios exercising. I did it for a couple of hours DAILY! 24/7 for over a year, then I allow myself 1 day off, then 2 days off. keeping it at a five days a week exercising, weights, bands, etc. I got completely out of pain, imbalance, etc. Wish I knew about this before!