1. < Neuropathy

Polyneuropathy

Posted by lewin @lewin, Jan 20, 2023

I am fed up with lack of research and current doctor who doesn't try and get my help. I have getting sicker and sicker. I have so many horrible symptoms. This is a neurological disease. I am losing control of my bladder. Was up three times last night. I live in Pittsburgh and there are no doctors here who can help me or understand the illness. I am tired of hearing from people who use supplements to help with what is a degenerative neurological disease.

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

kendallchase | @kendallchase | Oct 2, 2023
In reply to @ray666 "Hi, kendallchase I also did PT for a number of years. I've enough handouts here to..." + (show)
@ray666

Hi, kendallchase

I also did PT for a number of years. I've enough handouts here to prove it. After all those years, however, I've culled the many exercises down to my "daily dozen," those that seem to do me some good. They divide themselves neatly into two categories, six each: balance and leg-strengthening. The whole routine takes me 30-40 minutes to do. Some days I do the routine twice. As I say, these are the exercises that appear to be helping me. My chief PN complaint is poor balance, which, of course, makes walking – even short distances – both a struggle and not very pleasant (that's why the leg-strengthening).

I wish you luck in finding a routine or therapy that works for you!

Cheers!
Ray (@ray666)

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Would love to know what types of balancing routines and exercises you’re doing that seem to be helping you.

REPLY
Ray Kemble | @ray666 | Oct 3, 2023

Hi, kendallchase (@kendellchase)

Off the top of my head – and these are my pet names for the exercises – are the following:
1. toe-to-heel, or tandem, balance standing, eyes open, try closing for a few seconds, arms extended, lower to sides (very basic balance routine)
2. sit-to-stand (without pushing up with arms), try not fully sitting but instead "hover" (good for knee strength – but be careful: can hurt knees!)
3. ham & calf stretching, each leg (very basic runner's exercise)
4. stationary cycling – as many minutes as you feel like doing
5. Better Balance For Life online classes (not every day)
6. foot strengthening: weight bags on feet, rotate feet, up & down, etc.
And just KEEP MOVING! Indoors, outdoors, stand, sit, wiggle, twitch, try to stay in motion as much as possible (Twyla Tharp has a great book on this: "Keep It Moving")

I've others, but these are at least a few I'm able to think of in the fog of early morning. 🙂

Good luck!
Ray (@ray666)

REPLY
cats0cats2 | @cats0cats2 | Jul 7 10:27am

Since I was hospitalized with excruciating pain in late Dec 2023, I have progressively gotten better. I was on so many meds and vitamins when I left the hospital the first of Jan 2024 and my pain was minimum. I was taking 18 pills the first few weeks. I think that the thing that helped my polyneuropathy most was the amount of steroids I received while I was in the hospital. My polyneuropathy involved my entire torso and the top of my right leg and a couple fingers on each hand. I have progressed from barely able to walk a few feet to walking without aides. My gait is not pretty and I do have to be cautious that I do not loose my balance, and can't do long distances unless I'm pushing a shopping cart. I am still on Lyrica and hope to get off that soon. BUT, the Polynuropathy is still in my upper torso and the few fingers. The neuropathy in the upper torso is the cause of my balance and strength issues still. So I am wondering in more steroids or HBOT or Scatter etc treatments would help with the remaining torso neuropathy.

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