Peripheral Neuropathy life changing

Posted by orsons @orsons, May 3 7:08pm

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.

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

John, Volunteer Mentor | @johnbishop | May 3 7:46pm

Hello @orsons, Welcome to Connect. You are correct, peripheral neuropathy or any kind of neuropathy can be life changing and difficult to accept. You are not alone and there have been a few other discussions on the topic that you might find helpful.

--- PN: From Anger to Acceptance: https://connect.mayoclinic.org/discussion/pn-from-anger-to-acceptance/
--- Increasingly Difficult to Accept Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/nor-accepting/
--- Acceptance: Anyone have difficulty accepting new limitations daily?: https://connect.mayoclinic.org/discussion/acceptance/

When is your upcoming appointment with a specialist to see if you might have autonomic neuropathy?

NJ Ed | @njed | May 4 6:51am

@orsons - Your symptoms sound very familiar to mine, started in one foot, then the other. My MRI did show stenosis and lower back issues "but not serious enough to cause the PN". Your other symptoms I can relate to, and Mayo did rule out autonomic. I am 9 years into this and at times, I think we all wonder which is worse, the numbness, pain, balance issues and many other symptoms or the way in which it impacts our lives. And it does! After going to 5 neurologists figuring, I'd get the cause of this as I'm not a diabetic, all I got was shrugged shoulders. So, unable to control the PN, I figured out some coping mechanisms which enable me to do what I can do, and I try not concentrate so much on what I can't do. I'm now in my mid 70's and continue to be as active as possible wearing AFO's due to drop foot and even with balance, my wife and I are doing a cruise in the fall. We all need to figure out how to live our lives safely despite we have PN. It's possible, keep positive.

bunnybear | @bunnybear | May 4 7:34am

Gabapentin helped with my PN a lot.

orsons | @orsons | May 4 7:35am

Thank you so much for your lovely response. I have found it difficult to accept because I was so active. It has made me get extremely depressed. It's a very strange condition when you think about it. I thought you had the best medics in US. I'm in UK and will be seeing a neurologist who specialises in this condition but I've to wait to August. I will be having a skin biopsy. Apparently they can tell by that if it's autonomic which I sincerely hope not. It's lovely that your going on a cruise. I read about a couple who went on a day trip where they docked and there was a delay getting back which wasn't their fault. They phoned the cruise liner but it wouldn't wait for them. I think that's terrible!

orsons | @orsons | May 4 7:40am

In reply to @bunnybear "Gabapentin helped with my PN a lot." + (show)

Well I've been on Pregabalin 600mg for quite a while but it doesn't really help. My doctor said thing is pain might be even worse coming off it. I gained about 10 pounds in weight and I don't eat much. Pregabalin seems to cause water retention. That said it is supposed to be best one for PN save Tramadol but that's a killer in the end isn't it.

bunnybear | @bunnybear | May 4 8:02am

Pregabalin (Lyrica) didn’t help my PN either. But it does help other pain. I’m trying to figure out what to do next. I went off Lyrica because it made me gain so much weight but if that is not a side effect for you or you can tolerate the weight gain, Lyrica is a good pain reliever in combination with other pain relief remedies. At least it was for me. Now I’m on gabapentin and at least it relieved my PN. And Tramadol helped a lot and was easy to get off of but my doctor wanted me discontinue it so I complied. Good luck to you!

orsons | @orsons | May 4 9:07am

Interesting what you say. Pregabalin seems to slow metabolism and possibly retain water because I was 8 stone and now I'm nearer to 9 stone which I don't like. Anyway I may try what you are on. It's the pins and needles that gets to me more. It's awful. What to do!

mitfit | @mitfit | May 4 10:49am

You are so right. PN is life changing. I have dealt with it for 40 years and it has progressed over time. I have learned to live with it. I do what I can and no longer complain or curse it. It is what it is. So many people have things worse than I do. I guess the key is to learn to live around it.

orsons | @orsons | May 4 11:56am

Maybe I'll grow to endure it but I have other things that go with it .....it seems tinnitus gastric problems and so on. You have obviously had it from a relatively young age. I was 63 when all this started. Now 67 so I suppose I took it all for granted and never imagined I could have all this. It feels like I've been cursed. Sometimes that's what I feel.

pnpam75 | @pnpam75 | May 4 11:40pm

In reply to @njed "@orsons - Your symptoms sound very familiar to mine, started in one foot, then the other...." + (show)

Sounds sadly too familiar to me. What are AFOs? All these abbreviations are new to me. Peripheral neuropathy has taken over my life in last two years. Now I have MGUS ? as well. I have zero balance as of about a year ago and several falls. I use my newly acquired walker “ almost” all the time. I greatly appreciate “Connect” as I am learning so much about this dreadful condition.