Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy group.

@mike365

Hi Sue and John, thank you for the comments, welcome and information. I'm working through strategies to get to sleep, including listening to boring podcasts in the background. I have tried listening to podcasts like "Sleep with me", and others similar, on Spotify and found it sometimes works. I also listen to favourite old music albums in the background helps also. I have pills I can take, but limit this strategy to once a month or so.
Staying asleep is a different matter. I'm thankful if I can get 4 hours, and overjoyed if I get 6 hours. I try to have a nap in the afternoons, and now view this as part of my SFN sleep cycle.
Thank you both for your comments, it helps just to know I can contact someone, and express myself.

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I too don’t get enough sleep , waking during the early hours and that’s it I can’t get to sleep again . It’s awful and I know it makes our medical problem even harder to deal with , thinking of you

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I suffered for many years watching the neurophy go from a big tow and foot slap to no longer being able to feel anything at all from my feet. Then my primary care doc discovered I had a hyper active parathyroid. The slightly by only a point or two elevated calcium in the blood higher than normal went unnoticed from 15 to 53. Within hours of successful removal of the hyperactive parathyroid got the use of my toes and feeling improved for 6 months.

But the calcium built up around my disc and excelerated disc degeneration. MRI 2years ago showed many mild bulging disc. Last week 4 in the L spine are now moderate to sever and one in-the T spine is quite sever. Both legs are numb for 8 weeks straight and had 24 hour bed rest massage and 6 hours of tens treatment before the MRI so it showed best case.

Have gone from a day or two a month with little or no sleep to an average of 3 or 4 hour a day depending on the week. But the nights where there is no sleep because muscle relaxer, pain pills and sleep aid are not always enough to get sleep.

Hope you find answers.

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@sueholdenf

Thankyou for this information , I will bring it up with my neurologist , as my GP. Does not know much about this condition . Another thing if you could help me please , I’m interested to know if or when. People with neuropathy affecting the feet , eg , numbness Consider to stop driving , would it be up to the patient or can the neurologist Stop you driving . They are quite happy with me driving at the moment , but if I feel the need I will install hand controls to the car ( not looking forward to that ). Do you know where I can get more info on this please . Susan

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@steeldove posted a link to the manufacturer of the hand controls and may have some suggestions for you. Here is a link to the post – https://connect.mayoclinic.org/comment/157046/

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@johnbishop

Welcome @amahoff, Members have shared experiences that may be helpful in the following discussions:

— Muscle Spams and Neuropathy: https://connect.mayoclinic.org/discussion/muscle-spams/
— Does Small Fiber Neuropathy also cause muscle spasms?: https://connect.mayoclinic.org/discussion/does-small-fiber-neuropathy-also-cause-muscle-spasms/

Have you been diagnosed with neuropathy?

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John, I'm new here. 62 y/o F. Dx Nov.2019 with PN hands, toes/feet leg stiffness. I have had the whole gambit, MRI's, etc. Extreme burning in upper arms, on gaba 600mg x4/day, neurotriptiline 40ng x 2/day. I'm now experiencing numbness/heaviness upper thighs. Just saw 2nd neuro, put thru battery of usual tests. Concerned about my upper thighs. Anyone else going thru similar? I'm in Ontario Canada. Had to retire after 30+ years in Healthcare. Not sure what to exoect next.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Since 2012. Pain meds are really the only way to help with such pain. It's all over my body also from 4 back surgeries and a disc that broke and is sticking inside my spinal cord but hasn't broken through to the spinal fluid yet. ✝ With God I keep walking even after being paralyzed from the waste down. God is a miracle waiting for you to ask. Bless you all in such Pain!!!! ❤

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I’m dealing with it as a parent of a 50 yr old chef. Diagnosed 5months ago after a 11step fall crushing his clavicle. Now on Gabopentin, 900 mg and two depression meds. He now goes without eating for days and sleeps 3/4s of a day. He works 5-6 hours a day and then collapses. Is this common? I’m concerned he might fall asleep at the wheel

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@vicjfaoro1

I’m dealing with it as a parent of a 50 yr old chef. Diagnosed 5months ago after a 11step fall crushing his clavicle. Now on Gabopentin, 900 mg and two depression meds. He now goes without eating for days and sleeps 3/4s of a day. He works 5-6 hours a day and then collapses. Is this common? I’m concerned he might fall asleep at the wheel

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@vicjfaoro1 – I've read that fatigue can be one of the symptoms of taking antidepressant medication. Here's some information on the topic — When Your Antidepressant Makes You Tired: https://www.verywellmind.com/fatigue-caused-by-antidepressant-1067353

One of the tips the article mentions is taking the medication at bedtime. When does your husband take the medications? Has your husband discussed the symptoms with his doctor?

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@amart26

I ‘ve had neuropathy since I had my right hip replaced… had EMG and I was told it is chronic

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Mine started 14 months after left hip replaced first dizzy high heart rate that kind of went away they a month later feet started burning stabbing pain. Hip was OK first 4 months now it hurts when I sit. Chronic pain that i don't think is related to tendons.

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I am not sure where to find the correct group but I have something called TSHDS Antibody. My neuropathy is caused by immune mediated. Has this been written about this kind, I am new to this sight so I am not sure what this is or how It happened to me ?

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@dkappel

I am not sure where to find the correct group but I have something called TSHDS Antibody. My neuropathy is caused by immune mediated. Has this been written about this kind, I am new to this sight so I am not sure what this is or how It happened to me ?

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Hi @dkappel, I think this may be the discussion you were looking for ?

TS-HDS Antibody and Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/ts-hds-antibody-and-small-fiber-neuropathy/

Neuropathy Commons has a good explanation of all of the antibodies associated with neuropathy including TS-HDS — https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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11 months legs ,arms,face

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I have sensory , motor and autonomic neuropathy . I had a fall in June 2021. Can anyone comment on symptoms. I have numbness in feet and up my legs, in hands and arms and have issues with dry mouth and eyes. Anyone else experiencing these issues ?

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