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Anyone experience muscle loss due to neuropathy?

Posted by jum13 @jum13, May 28 9:14pm

I have been dealing with PN for 20+ years. 5 years ago I began working out and lost weight and got in great shape. I bike, walk, lift weights. Every year I take a fitness assessment test. This years test showed a higher than average overall muscle mass for my age(60), I was below average for legs and had lost a significant amount of muscle mass in my legs from the previous year. I read that is possible with neuropathy even with exercise. Just wondering if anyone has experienced that before? I had been struggling with unexplained leg weakness, I don’t know just trying to figure it out.

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megidigo | @megidigo | Jun 1 9:46am
In reply to @artemis1886 "Muscle atrophy is part of neuropathy and so is weight loss. These past nine months I..." + (show)
Profile picture for artemis1886 @artemis1886

Muscle atrophy is part of neuropathy and so is weight loss. These past nine months I went from 195 to 150.
The bad thing is I spent 10,000 dollars redoing my wardrobe before I retired from work. I hadn’t bought clothes in over ten years because I hate to shop. I have muscle atrophy in my feet and legs. My neuropathy I have had since 2001 and mine is autoimmune. I have lupus, connective tissue disease, sojourns and Hashimotos. I get really frustrated reading up on neuropathy because everything is for diabetics. My a1c and everything is fine but my inflammatory markers are sky high. My last blood work last month my sed rate was 135+. The system quit counting. The neuropathy in 2021 moved into my heart so now I have cardiac autonomic neuropathy called CAN. The thing I wish most is the doctors would be upfront with you about what to expect with neuropathy instead of telling you as something new happens, I am getting some muscle mass back with IVIG I take every three weeks for three days. I noticed it when my son was in an accident and been diagnosed with severe traumatic brain injury without it I would be lost. I change him and rotate him along with feeding him. He is starting to feed himself. Plus I bath him. The worst for me is the fatigue.

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@artemis1886
I only know of CAN because I found it online as I found out about autonomic neuropathy as it is effecting my bowels. I agree with you about doctors - nothing was explained to me about it being in my motor nerves or the fact its long fibre or that it could affect my bowels. I found out a year later. Im having bad fascilations in my left calf which has the most atrophy and left foot is worse everymorning I wake up. Considering going to the hospital but know nothing will be done. The neuro I was seeing told me to go and enjoy and live life and he didnt need to see me anymore despite the fact Im declining. I’m only two years in and feel like I wont be walking soon. I cant get someone to examine my foot and see if there is damage done due to the neuropathy.

Sorry to hear about your son and then dealing with your own health issues. That is deserving of great respect.

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dorob | @dorob | Jun 2 7:44am
In reply to @klj01 "At age of "82" I fight daily with pain in my feet. All this started in..." + (show)
Profile picture for klj01 @klj01

At age of "82" I fight daily with pain in my feet. All this started in my 70's and was caused by Peripheral Neuropathy, According to my Doctor. Now I have pain in my neck, back and some fingers. Is this cause by Peripheral Neuropathy as well?

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@klj01
I am sorry you are experiencing this as well. I started having numbness in my fingertips in 2008. A ctscan showed cervical compression of spinal cord - 1st surgery. 10 years later, similar symptoms returned - 2nd cervical surgery. Now after a series of falls due to a complicated knee replacement, severe neuropathy in ring and pinkie fingers of right hand now starting in left. Also PN in feet and lateral calf muscles. Ctscan shows a subluxation of cervical discs below my other neck hardware. Getting ready for surgery #3. These issues began after years of work in the exercise and fitness world and honestly probably life in general - the lifting and moving of things, body genetics (I don’t think I have the gift of a perfect skeletal structure!). So the peripheral neuropathy is not causing your neck issues, it is just the opposite. I encourage you to see an orthopedic surgeon or neurologist or neurosurgeon to see what your options are at your beautiful age of 82. I wish you many blessings!

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frankmoore | @frankmoore | Jun 4 12:49am
In reply to @artemis1886 "Muscle atrophy is part of neuropathy and so is weight loss. These past nine months I..." + (show)
Profile picture for artemis1886 @artemis1886

Muscle atrophy is part of neuropathy and so is weight loss. These past nine months I went from 195 to 150.
The bad thing is I spent 10,000 dollars redoing my wardrobe before I retired from work. I hadn’t bought clothes in over ten years because I hate to shop. I have muscle atrophy in my feet and legs. My neuropathy I have had since 2001 and mine is autoimmune. I have lupus, connective tissue disease, sojourns and Hashimotos. I get really frustrated reading up on neuropathy because everything is for diabetics. My a1c and everything is fine but my inflammatory markers are sky high. My last blood work last month my sed rate was 135+. The system quit counting. The neuropathy in 2021 moved into my heart so now I have cardiac autonomic neuropathy called CAN. The thing I wish most is the doctors would be upfront with you about what to expect with neuropathy instead of telling you as something new happens, I am getting some muscle mass back with IVIG I take every three weeks for three days. I noticed it when my son was in an accident and been diagnosed with severe traumatic brain injury without it I would be lost. I change him and rotate him along with feeding him. He is starting to feed himself. Plus I bath him. The worst for me is the fatigue.

Jump to this post

@artemis1886 I have muscle waisting in both lower legs.i go to the gym 5 days a week working on all muscle groups & spend quite a bit of time on my legs. That seems to have slowed down the muscle loss & has helped a lot on my balance. Before I took up this program I fell often & i have had some close calls since but have manage to get my feet back under me before succumbing to gravity. I will try the IVIG & see if that helps me.
Thank you & good luck.

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artemis1886 | @artemis1886 | Jun 4 12:44pm
In reply to @frankmoore "@artemis1886 I have muscle waisting in both lower legs.i go to the gym 5 days a..." + (show)
Profile picture for frankmoore @frankmoore

@artemis1886 I have muscle waisting in both lower legs.i go to the gym 5 days a week working on all muscle groups & spend quite a bit of time on my legs. That seems to have slowed down the muscle loss & has helped a lot on my balance. Before I took up this program I fell often & i have had some close calls since but have manage to get my feet back under me before succumbing to gravity. I will try the IVIG & see if that helps me.
Thank you & good luck.

Jump to this post

@frankmoore My neuropathy is autoimmune. So IVIG also works on my Lupus, sojourns and connective tissue disease. I was on IVIG from age 10-18. I was told if I would have stayed on it I would not be in the shape I am in.

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cleveland26 | @cleveland26 | Jun 4 1:01pm

I have muscle loss also. Until reading this thread, I attributed the loss solely to Mounjaro, a GLP -1. I didn't realize that neuropathy causes muscle loss as well.

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