Connect
Let’s have a chat about what if anything works to improve your life wi
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
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!
-
Like -
Helpful -
Hug
2 ReactionsHello, 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)
-
Like -
Helpful -
Hug
2 ReactionsHi, 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!
Tai Chi is excellent, but the treadmill was a no no for me because of he lack of balance, so I walked around and when too hot, I walked at a mall.
What improves my lifestyle the physical or the psychological let me address both physical. I am on 1500 mg of gabapentin 100 mg of pregabalin for the most part. This dosage is working for me now 2 1/2 years ago I was on 900 mg of gabapentin and no pregabalin. I have autonomic neuropathy plainly my symptoms very as much as the weather, psychologically for my mental well-being. I try to keep myself busy, so it’s not to think about what neuropathy is stolen from me. I listened to a lot of music by the way, which helps me not notice the ring in my ears, which also come and goes. I’ve learned how to compartmentalize some of my symptoms and because some of my symptoms, I’m in touch with parts of my body. I never would’ve thought possible. I feel things internally that I don’t believe we are meant to feel and that itself is beyond strange and not always painful in fact, humorous when my out of work central nervous system, let me feel parts of my body. I’ve never thought I’d feel.(hard to explain.) so for the most part I just go with it not that I have much of a choice and his progresses. I will adjust my adjustments to all. Have a good day.
-
Like -
Helpful -
Hug
1 ReactionGood morning, Mafalda (@mafalda)
A couple of hours daily? Wow! I can see where I need to improve. And massage. My PT has never suggested massage. What you've told me has got me thinking. The PT I've been working hasn't been able to work with me since last fall, only because my 2024 insurance had reached its year's end. I'm given to believe, now that it's 2025, I've got coverage again. I've left messages for my PT, asking if and when we might get started again––but she's not returned my calls. Reading of the success you've had with your far more vigorous approach to guided exercise, I'm urged to phone the home-health company for which my PT works (a contract PT, so for all I know, she may have moved on) and say I'd like to begin PT afresh, but this time with their "best" physiotherapist who's also a believer in massage.
Thank you for your reply! You've given me a mission for today.
Cheers!
Ray (@ray666)
Hello!
It's comforting to know that there are others who find dismounting from a treadmill to be among life's great challenges, right up there with marrying well and trying to learn Classical Greek. 🙂
Ray (@ray666)