Unexplained neuropathy

@njed I agree. After almost 50 years of HNPP, it’s just part of my identity. Don’t like when new symptoms show up though, but bigger health issues brought me to this forum recently. While I’m here, it’s just interesting to see what my neuro peeps are experiencing. My son actually had nerve transposition surgery on both arms in his 20s after losing the use of his last two fingers on both hands plus a lot of pain. I didn’t have that happen, but I’ve had some issues with it that he hasn’t had and hopefully won’t get. He once said, I’m not glad you have this too, but I’m so glad there is someone else who understands because people don’t believe all the weird stuff that happens to me with this. Yeppers. We all have our battles in life so we’re all in this together in one way or another. 🙂

This sudden PN got my hands & feet terribly at first. Everything was awful…. trying to keep a fork & knife in my hands to those crying moments of realizing you weren’t holding the TP you thought you were. It wasn’t bad enough that they had to help place me on the toilet to begin with. Once again, extensive PT to the rescue, or perhaps it was the Occupational Therapy, as I sometimes still get confused at which skills fall under which therapist, so loved it when my rehab institution back then addressed it all. There were a lot of activities to strengthen fingers, like squeezing balls, and coordination like sticking pegs in holes. At home exercises could be fun, like emptying a bag of jelly beans or skittles in s bowl and sorting them by color on the table or other bowls. Not as expensive as practicing with pills and you can reward yourself whenever you please. Playing solitaire or cards with a patient person can help. Since I was “special”, my social committee at my HOA had me pick out winning raffle tickets from a hat at events sometimes, and you can image my disappointment in front of a crowd of my hand coming out grasping air vs the winning ticket. With the therapy, grasping pills and pinching things has improved a lot - not perfect, I can’t read these ultra thin cheap newspapers anymore, but book pages are easier. You may consider asking your PT’s for advice or think of some at home exercises.

I dont know if this is helpful but I have had ppl tell me buying shirts with snaps instead of buttons helps. An occupational therapist may have some ideas for helping with pills and other things at home?

I spoke too soon - got a jolt reminding me it’s not over last night 🤪. So again the weirdness - you sweat, I don’t. Sometimes I think that’s why it pains me to be outside in the summer, I’m burning on the inside. The good thing about being at a swimming pool is that it keeps me in the water often, doing some exercises that are very good for us!

@dbeshears1 - Based on what I've found out, with PN one can have unusual sweating which could be too little or excessive. You are right, the symptoms are different, but the underlying problem is the same. Whatever we have to do to minimize symptoms I say do it even bopping around in a pool which gives needed exercise as well. I do the same and feel great in the pool.

A thought - have you tried licking your finger before turning a page?

Thanks for the suggestion. I'm sure that would help, but as a germaphobe with a compromised immune system, I never lick my fingers. Those little rubber fingers you can put on might help too. I haven't tried them, but I wouldn't always have one ready to go when I'm out and about. I should test one just to see though. 🙂

I think the little rubber fingers are a great idea. You could keep one in a ziplock bag in a wallet - they’re small.

I have somewhat similar problems with my hands - buttons, turning pages, hearing aids, tp, gripping large water glasses, etc.

I know we do our best to find the most hand friendly items.. elastic waist slacks and other slip-on items - we just do what we must to be smart. I think my biggest frustration with products though are how they try so hard to childproof things that now people like us can't get into things. My entire career supported consumer products, so I get it; but geez, I sure wish I could into my Tide Pods, as my husband & I promise not to eat them 🙂