Dose anyone else feel like neuropathy is taking over their life?

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I have had pain, numbness, decreased mobility, unstable gait completely take over my life the past year. I, as did my primary doctor, initially felt the pain, which is heaviest in left hip down through foot was due to when I fractured my hip in 2021, and a blood clot that was in my lower left leg. Well, it turns out to be peripheral neuropathy, amplified by spinal stenosis/degenerative disc disease. The numbness, weakness, all have been progressing worse and worse each day since November of last year. Both feet are solid numb 100% of time now, and both hands are slightly numb, left one more so to the point I am barely able to grip or hold anything with it. I have begun the process of filing for SSDI, hopefully I will be approved by October, when my short-term disability coverage ends. I have friends and family, because there is nothing they can see aside from my mobility and gait to indicate a health problem not fully believe me when I describe the level of pain and difficulty doing even the most basic of tasks. I can only get a couple grocery items per trip, as I cannot walk too far, I don't attempt motorized carts because I cannot get out of chairs sometimes. My bathroom has not been scrubbed in months, there are times I just cry because of my inability to perform such basic functions anymore. I am doing physical therapy, but so far, no help.

@sallygirl what were you diagnosed with and when? There are many of us with somewhat similar symptoms.

I have many physical issues, but the one pertaining to this group that I was officially diagnosed with is motor and sensory polyneuropathy. I said peripheral neuropathy above, but that is probably because of how it was explained to me, but the results and doctor's notes list it as motor and sensory polyneuropathy.
My primary doctor diagnosed peripheral neuropathy some months back after an MRI and CT, and my neurosurgeon had an EMG and nerve conductive test performed to verify on 6/21/23. Test results were almost immediate. I expected weeks for that, so was shocked at quickness of. The symptoms started appearing moderately last November and progressed since then.

Sorry to hear you have a double whammy, bummer. I only have motor and PN in legs. So far I’ve been able to keep it in check with exercise and walking.

Thank you. I was away for a long time. Thanks for your comment./reply.

I'm so far down this neuropathy hole I have to reach up to touch bottom. My QOL, which has been hovering just over zero since chemo five years ago, seems to be moving toward negative numbers. I do what I can. I am now looking more into exercise for therapy. I use my stationary bike and am trying isometric exercises. I am also using resistance bands, which work well. Being retired, I divide my day into, e.g., one hour blocks of time within which I can pre-plan an activity. Accomplishing my first task in the morning, large or small, gets me out of neutral, into gear, and off to a good start. A successfully executed task in the morning creates momentum, which helps me accomplish the rest of the day's activities. While I am thus engaged, the distress from neuropathy is much less noticeable.

Hi, Sarah (@sallygirl)

I was also surprised at how fast I got the results of my EMG: mere minutes, not days or weeks. I'll never forget the moment. My doctor had finished the test and told me I could get dressed. I was expecting him to say he'd call me in a few days. Instead, he drifted to the exam room's only window and stood there for two minutes with his back to me while I slipped back into my clothes. His silence had me in suspense. They were an excruciatingly long two minutes. Finally, he turned and came back to me, saying, "Well, Ray, I've got both good news and bad news for you. Which do you want first?" The good news was my condition might have been worse. The bad news was: idiopathic polyneuropathy. I hadn't expected I'd go home that same day with the results of my EMG already in hand.

Ray (@ray666)

My hand drop has progressed to "hands feel like they don't want to move anymore." It feels like my limbs are turning into clay. I can still move them, but what used to be mostly automatic now requires a deliberate effort using manual override. It's like if you've ever woken to an arm that went to "sleep" because of impeded circulation. At first, the "sleeping" limb is numb and will not move. That is what I have now, to a lesser degree, when my arm is at rest, but it seems to be slowly worsening.

I feel for you. My arms got so bad while sleeping that I wear long wrist supports to bed every night, at the suggestion of folks on here, especially @johnbishop . Something turns my arms “off” very easily, and some stools (especially metal) seem to turn my legs off sometimes. It’s almost like a switch that turns the power completely off in my arms or legs, and takes a while to shake it off and get the current flowing again. It seems my nerves must be easily compressed. I can’t sit at a computer for long. It seems no matter how I position my arms, elbows, or wrists, they become unusable very quickly, and I try them out often, can’t stay on a computer more than 15 minutes at a time. My last EMG on one arm and leg for PN was 2+ years ago, and I recall a note to the effect that due to PN, carpal tunnel couldn’t be distinguished but was possible. But my fingers really affected are my pinky & ring fingers on both arms, and I know those are the ulna nerve system vs carpal. But either way, they say it’s PN and I need to live with it, so I took the advice on buying wrist/forearm supports for sleeping, and I have had a 95% improvement in not waking up with the dead, non-moving arms from compressing them while I sleep!