Are the symptoms weird?

Posted by robindancer5678 @robindancer5678, Jul 26, 2023

So I am new to small fiber poly neuropathy (symptoms started in February, diagnosed in June) and I’m having symptoms that I think are weird, but might be normal. What do you think? Some days I am fine and I am able to dance and walk for miles and I live my normal life. Then the next day I could be floppy in my gait even though I can go to the gym and press 70 pounds with my legs and be on the stationary bicycle for 25 minutes. Some days there is no tingling, some nights the tingling feels like I’m being electrocuted through all my limbs, and I need to grab a couple of gabapentin in order to sleep. Some days I have no twitching in my extremities and other days my muscles say hello to me with twitching periodically. Is this normal? It feels like it waxes and wanes (daily!) and I don’t understand it. AND some days I have fluttering in my chest, which my cardiologist says is not cardiac and may be GERD and some days breathing is a bit labored. I had an I had none of this prior to the start of the polyneuropathy. Off to the pulmonologist today. Thoughts?

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@johnbishop

Hello @rplg, I would like to add my welcome to Connect along with @emo @jwkelly72 @ray666 and others. Like @emo has suggested, I also have been concerned about my balance and have been doing a few different exercises but I setup an appointment with a physical therapist last week and was really happy that I did. He showed me several different exercises that I can do at home to help with the balance. I have difficulty doing them but loved my conversation with him when he mentioned we have to retrain the brain. I said, oh, you mean using neuroplasticity? He's eyes lit up and he said exactly! Here are a couple of videos of the exercises he showed me. Both are difficult for me and I need to be close to a wall or railing for the tandem walking and next to a chair or railing for the single leg stance.

--- Tandem Walking: https://youtu.be/50hy4hkkTSg
--- Single Leg Stance with Support: https://youtu.be/3j0O6jRe8uY

Have you thought about working with a physical therapist to help your balance problem?

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Thank you and yes, I do have an appointment with a physical therapist.

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Physical Hallucinations. False sensory input from malfunctioning nerves. It really is weird. Symptoms come and go, but lately they stay a bit. The worst for me is the morning. Sometimes when I wake up the sensations freak me out. Then I get up and it all goes away. Some days are worse, Wet, hot, cold, burning, tingling all mixed up. Definitely weird. They say it’s from my back. MRI shows severe lumbar arthritis. Collapsing discs. So lose weight, physical therapy and drugs….

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Your symptoms have the same general theme as most of us, which is as you say, consistently inconsistent. Seems no 2 of us are 100% alike, from when we noticed first symptom, severity of onset, tests performed for any possible diagnosis or cause, or types and severity of many types of symptoms. This group is excellent in sharing experiences on what remedies or tools have helped with any given symptom. You have a lot you can explore here and hopefully get ideas. Good luck with your appointments - I hope they are able to narrow down the general underlying condition to help in the recovery and management of your systems. I hope you’ll share what you learn!

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@jwkelly72

Been there , done that, my balance and ability to walk ended in March 1990. Best wishes and recovery

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Please tell us, did your ability and balance problems go away or you can't walk now? I hope your problems are gone now. Thanks

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Gleaned from the internet so grain of salt…….

The pharmacokinetics of gabapentin require regular dosing, it will not work if dosed “as needed.”

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@gba

Please tell us, did your ability and balance problems go away or you can't walk now? I hope your problems are gone now. Thanks

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Can't walk(left side hemiplegia, no balance at all,I either fall back into my wheelchair,forward or left.inversion of my
entire left leg which results in either a scissor kick or getting caught on floors, carpet, rugs, bare, inversion in my ankle too, clawing if my toes especially with an afo on. I get tremors , massive sweating, back pain. Had left side surgeries in 1990,had all types of therapies from biofeedback onward. Had ambulatory therapies from canes-walkers. Manual wheelchair is the only safe bet for me. Since July 1st 1991 I've been able to live alone and independent because of it. I have no issues being wheelchair bound for life. Quality of life, a pain free life, a free life are important. Add to that it's difficult enough for the able bodied to live alone, to be disabled and do it is even tougher. I take pride in it. And a wheelchair is a source of mobility not inability. It is not a shameful thing to need one. The shame would be thinking you're too good to use one, or weak for using one. Arrogance and such pride are sins

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@jwkelly72

Can't walk(left side hemiplegia, no balance at all,I either fall back into my wheelchair,forward or left.inversion of my
entire left leg which results in either a scissor kick or getting caught on floors, carpet, rugs, bare, inversion in my ankle too, clawing if my toes especially with an afo on. I get tremors , massive sweating, back pain. Had left side surgeries in 1990,had all types of therapies from biofeedback onward. Had ambulatory therapies from canes-walkers. Manual wheelchair is the only safe bet for me. Since July 1st 1991 I've been able to live alone and independent because of it. I have no issues being wheelchair bound for life. Quality of life, a pain free life, a free life are important. Add to that it's difficult enough for the able bodied to live alone, to be disabled and do it is even tougher. I take pride in it. And a wheelchair is a source of mobility not inability. It is not a shameful thing to need one. The shame would be thinking you're too good to use one, or weak for using one. Arrogance and such pride are sins

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I agree about a wheelchair being “a source of mobility, but inability.” I’m thinking of talking to my physiatrist about getting one myself, to help me when my symptoms are at their worst.

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@emo

I agree about a wheelchair being “a source of mobility, but inability.” I’m thinking of talking to my physiatrist about getting one myself, to help me when my symptoms are at their worst.

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Why do you need to discuss something that is your choice with someone else like it's anyone's choice but yours. I've had people come up to me wanting a wheelchair for back pain relief, leg pain.. Why suffer to make others feel better about you, be more comfortable with you ? Are they going to share your physical pain, no

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@blearyeyes

Physical Hallucinations. False sensory input from malfunctioning nerves. It really is weird. Symptoms come and go, but lately they stay a bit. The worst for me is the morning. Sometimes when I wake up the sensations freak me out. Then I get up and it all goes away. Some days are worse, Wet, hot, cold, burning, tingling all mixed up. Definitely weird. They say it’s from my back. MRI shows severe lumbar arthritis. Collapsing discs. So lose weight, physical therapy and drugs….

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Similar symptoms for me caused by annular tears in the lumbar spine. Does your MRI show the same?

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@jwkelly72

Why do you need to discuss something that is your choice with someone else like it's anyone's choice but yours. I've had people come up to me wanting a wheelchair for back pain relief, leg pain.. Why suffer to make others feel better about you, be more comfortable with you ? Are they going to share your physical pain, no

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Oh, I agree with you. I planned to talk to my physiatrist (a physical medicine and rehabilitation specialist) because she works at a rehabilitation hospital. They have a specific Wheelchair and Seating clinic, so if she could write me an order to be seen there, they have PTs and technicians (it’s a large rehab hospital) who will meet with you to figure out what works best and potentially we could get the wheelchair rental covered by insurance. If I do it, there’s a chance we could get one more adapted to my condition for much less or covered by insurance than if I just bought or rented it on my own. (I would never have known that except my father had a stroke, and we thought we were stuck with the chair they discharged him with, and turned out that was not the case after his doctor sent him to the Wheelchair and Seating Clinic.)

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