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My PN is better'n your PN! Naw, naw!
Neuropathy | Last Active: Feb 22 11:48am | Replies (17)Comment receiving replies
Hi @ray666 I’m glad you posted this.
I was diagnosed with idiopathic large fiber sensor motor Axonal Polyneuropathy. It’s progressive.
Although I don’t have the excruciating “ouch” type pain, it’s very disabling. My legs feel very heavy, weak, and numb under the skin and in the muscles . I have sensation on the skin surface but my muscles feel like they’re becoming paralyzed. When I walk my feet thump hitting the floor. - I call my legs log legs. Lol! I’ve fallen badly several times causing ER visits for head CT scans , etc. And I have very annoying vibrating sensations in my legs and sometimes my hands and chest. The vibrating is worse in the night and wakes me several times a night. Breathing techniques will settle it down so I can go back to sleep.
My peripheral nerve damage has also caused orthostatic intolerance and has damaged my ears causing tinnitus- which I’ve had non stop for 20 years.
I’ve also had ME/CFS ( Chronic Fatigue Syndrome) for 40 years and am housebound spending most of the day lying down. My neurologist wanted to order in home PT for balance training but I can’t exercise at all due to extreme fatigue, I use a motorized wheelchair when I go out.
So yeah, like you, I don’t have the excruciating pain others have, but my disability level is over the moon. Definitely is not a “better “ PN!
I might add that I’ve been on low dose Naltrexone for a decade for arthritis and muscle aches due to fibromyalgia and ME/CFS. I’ve wondered if that’s partly why my PN isn’t particularly painful.
Do you have that annoying vibration in the nerves too? Mine started with the EbV infection 40 years ago, but got worse in later years as the PN advanced.
Replies to "Hi @ray666 I’m glad you posted this. I was diagnosed with idiopathic large fiber sensor motor..."
Good morning, Suz (@db72)
Your PN sounds a lot like mine: idiopathic large-fiber polyneuropathy. However, you're having to put up with symptoms that I'm not. That's another part of the madness of PN: Why, if two sufferers diagnoses appear to be a match, should one sufferer be plagued by vibrating sensations and tinnitus, while the other sufferer is not? Maybe it's only a matter of my not having progressed to that stage of my PN. That's possible. I am honest enough and realistic enough to say that it is possible. What you're experiencing may be what I'll be experiencing a year or two from now. You mention at one point having to manage one of your symptoms for something like for 20 years. By comparison, my PN is a mere babe in the woods. That's a word to the wise to all of us with PN––no matter what kind of PN––we'd best be prepared for "whatever."
Suz, I wish you the very best! Stay strong.
Cheers!
Ray (@ray666)
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@db72
I have read with interest the comparisons of neuropathy. My PN is due to my celiac disease and other than an EMG test, I was not biopsied or given any test to tell what kind of neuropathy I have. Last summer I was doing fine but this winter I had a shin shave biopsy to remove a lesion and that changed things. The lesion was benign but then I started suffering some unpleasant nerve issues at the site of the biopsy. Then the extreme cold winter and snow came and that added to my pain. My neurologist said the neuropathy had progressed but was still hopeful that with my gluten free diet and wearing warmer footwear, I could get better manage my neuropathy. Now waiting on spring... However, I believe that even if we have the same kind of neuropathy, one person's experience of it might differ from another's. I guess our brains and our perceptions of pain have alot to do with this. So , alongside physical therapy (which is helpful),I am trying to brainwash myself into believing that my PN is not so bad.