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Peripheral Neuropathy is life changing: How do you accept it?

Posted by orsons @orsons, May 3, 2024

It all started with pins and needles in one foot. I left it but finally went to hospital and they said my thyroid was underactive. So I was put on tablets to regulate my thyroid but the pins and needles remained and then went to other foot as well. I went to neurology and had MRI of head and back and later that year had another MRI but apart from stenosis there was no compression. I was very ill back in 2020 with other ailments which remain which is all rather strange. This neuropathy has been life changing. I take maximum dose Pregabalin but it doesn't really help save if I come off it the pain and discomfort could become worse. I have tinnitus and gastric problems digestive issues. I am going to see a specialist to see if I might have autonomic neuropathy which I hope will be ruled out. I just cannot accept what has happened to me.

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arcuri24 | @arcuri24 | 3 hours ago
In reply to @johnbishop "@lalper - I've often wondered if my degenerative disc disease plays a part in my neuropathy..." + (show)
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@lalper - I've often wondered if my degenerative disc disease plays a part in my neuropathy symptoms which is mostly numbness and some tingling in my feet and legs. I'm 83 now but it all started in my toes sometime in my mid to late 40s and gradually worked it's way up into the legs. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. You are so right about it not being easy to keep moving forward. Looking back, I should have seen it coming - my wife used to tell me when I was in my fifties that I walked like an old man then. I just smiled but now that smile has turned into a smirk and on the good days, a smile that breaks into a short lived laugh.

Being proactive is an excellent approach. My gait is not good and I have trouble walking distances and my balance is not very good. I try to keep moving and make a point of exercising 5 or 6 days a week for 30 to 45 minutes on an cross-fit trainer recumbent bike and a few minutes on a new stepper that I recently acquired.

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@johnbishop

It is interesting that you said your neuropathy started in your toes. For years I had pain in my right big toe-it felt like someone had banged it with a hammer. But now after neuropathic numbness and tingling had taken over my feet and more recently on and off in my shins, the toe no longer has that bruised feeling. I am wondering if the toe was a precursor to my celiac-induced neuropathy. My walking is pretty good save for the shin shave biopsy that apparently has irritated some nerves with the dermatologist's needle. Balance is okay and I do exercises for that almost daily. I am also working on reducing sugar intake since it is often inflammatory. I am really hoping that if the shave biopsy heals which may take quite some time according to my neurologist, I can hopefully drive the neuropathic pains from shins and deal only with the tingling of feet.

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traveler12 | @traveler12 | 2 hours ago
In reply to @ogl "I understand. It seems like my PN came on very quickly. I feel very disabled and..." + (show)
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I understand. It seems like my PN came on very quickly. I feel very disabled and can't imagine how to live with this for the rest of my life. I have recently had bouts of incredible itchiness that drives me crazy. I have asked my doctor about Gabapentin.

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I suffer from severe itching too. I found that applying some capsaicin cream a great help. I use a 0.1% cream. Either use a rubber glove or make sure you wash your hands well. You don’t want to touch your eyes by mistake and burn them.

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ogl | @ogl | 28 minutes ago

Thank you. I will try it.

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