Psychological effects of living with neuropathy

Hi, @valec ..... I would love to have little wine 🍷 while we whine, but one of the things I kept reading for those of us with PN was to cut out ALL alcohol. I typically had a glass of red wine with a meal and an occasional cocktail. But it has been several months, now, and I honestly don't notice much of a difference. Perhaps in my case the wine really wasn't playing a part in my symptoms. I suppose I need to try going back to my old habit and see if it makes things appear any worse! 😂

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@domiha = Wow...what a topic! Early on when I first came on board to the Connect, mentor John @johnbishop said to learn as much as you can about your condition, and I have focused on that wise advice. I've purchased several publications relating to PN and various reliable websites not selling any products are helpful. I think what has helped me the most is hearing from others who also have PN. Our doctors don't deal with the psychological effects of PN, they deal with test results. Has a doctor ever asked how do you feel about having PN? Think about it. We deal with this each day, how it affects our lives, and it does. To what degree, that depends on each person. I appreciate Debbie's comments above and it's true, it's what you can do. And, as @valec said, don't give up and keep fighting. How true! Mike, thanks for this post, it got many thinking.

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@ray666 Thanks for your response. As I read it, I was reminded of that song from "The Showman" - "This is me!" I have been retired for 9 years now... and do not miss the paperwork. I was in helping professions all my life, and I do miss the interaction with people... but the paperwork had become too time consuming. I'm sorry that you had to give up your beloved acting career, as it obviously brought you a lot of enjoyment. I can't say, either, that I have a lot of "pain" with my PN. I do have pins and needles, tingling, and numbness in my feet and slightly into my ankles at times. On occasion, I may get the burning sensation in my toes. But for the most part, my feet feel numb and tingly, which is strange.... and I have some issues with gait and balance at times...but not a lot of actual pain. If I'm walking full speed in a pretty straight path, such as for exercise, I tend to wobble less. I have more problem maneuvering from room to room in my home.... or in stores with aisles and stands to travel around. I was diagnosed with spinal stenosis in Nov 2021. I saw several neurologists and several orthopedists before deciding on one. The spine specialist I chose sent me for PT, and when that didn't do the trick after several months, he sent me to a pain specialist for epidural injections in my spine and also in my sacrum. By Nov 2022, the pain in my hips and legs was so bad I could walk only about 30 yards before sitting. I had a four-level laminectomy in Nov 2022 and two months later resumed PT. After a few months of the PT, I seemed to still be having problems with balance, so the spine doc sent me for an MRI of my neck, and he found that I had a disc at C-4 that was pushing against my spinal cord. No pain, but it obviously didn't need to be left to get worse... so I underwent a cervical fusion in May. After 6 weeks, I resumed PT.... and I could tell immediately that the cervical surgery did help. But the balance was still off a bit, and the conclusion is that it was related to the year of compression of my spinal cord from the stenosis. Here I am almost 2 years later .... able to walk again, but needing a break more often than before... and also my calf muscles seem to tire more easily. Could it be from sitting on my keester too much during the lockdown? I'll never know. I try to walk everyday. During the summer I swam. And I do go to the gym on occasion. I've read and researched, and I had my PCP check my Vitamin B-12 and B6, both of which are fine. I've bought "recovery shoes" in several brands. Some help more than others. I've gone the Gabapentin and Lyrica routes.... neither one doing anything for me other than making me feel loopy. I now take a low dose of Amitriptyline, but I can't say it helps very much. I have taken Benfotiamine and R Alpha Lipoic Acid ever since not long after my surgery last November... and it's about time I chunked those, too, to see if I notice any change. I have a foot massager that I slip my feet into several times a week, and that helps a bit. But I'm gradually coming to the realization that, like you, this is something that is a part of me now and I will just have to live with it. You said "the psychological hurt was punishing," and I guess that's where I am now. At 72, I suppose I should be grateful to still be mobile. albeit with limitations. Bette Davis had it right when she said "old age is not for sissies." This old body is beginning to show signs of wear and tear... and most everyone goes through aches and pains with aging. But I refuse to mentally "grow old" any sooner than I absolutely have to. 🙂

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Hi @domiha I had exactly the same experience as you. BTW, in my humble opinion, I doubt that 1 or 2 drinks is the cause of your problem. Otherwise, almost everybody would have PN, and/or alcohol wouldn't have been invented.
I used to drink quite a bit; perhaps 3 drinks a day. When I was diagnosed with small fiber PN, I decided to quit entirely. I was "on the wagon" for 3 months, and the PN continued to get worse.
I decided that my experiment wasn't working, but I cut back to one glass of wine/day, when I resumed drinking because of the PN and other reasons.
My logic(?) was that if it wasn't working after 3 months, alcohol probably wasn't the cause, and anyway I enjoy my wine too much to wait years to find out, which I don't have many of left.
I haven't seen a study which adequately addresses this particular question, other than the standard remark that excess alcohol can be a cause of PN. I've also been given completely different answers by my doctors. My guess is that nobody knows for sure.
If you or anyone else has different information, please post.
Thanks and good luck.

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I was just crying a little this afternoon. I’m one of those who has no idea why or how I got it (after many Dr and specialists appointments). Been dealing with it for around 4-5 yrs now. I get so depressed because I turned 50 this year and feel that I am still so young with hopefully, a lot of life left to live, especially for my 12yr old son. I try so hard to focus on other things. Mom always told me that your mind can only focus on one thing at a time. But, it’s just so hard at times. So, like others have said, feel free to whine. I’m new to the group and bet it’s completely understood and relatable to all.

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TY Ray, I’m so delighted to get feedback. I tried attending the live support group with my local bell 🔔 ringers group, I was the only one in attendance. Still ! I go each month to see if anyone is in attendance..
NOW ! I know there has to be someone that has tried
cannabis for relief. Don’t be shy speak up.good or bad idea/ experience.

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Welcome @danamw73, I think we've all been there at one time or another and it's easy to get depressed when you have to deal with the condition every day. My neuropathy started sometime in my late 40s into my 50s but I didn't bother to get a diagnosis until I was in my early 70s. My best advice that I can offer is to learn as much as you can about your condition and treatment options available that may provide relief for your symptoms. Connect is a great place to learn what treatments others have shared has helped them.

If you haven't already seen the following site, it might be worth your time to read through some of the information on the available alternative and complementary treatments.
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Do you you mind sharing a little more about your diagnosis and any treatments you have tried?

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@jeffrapp I had one physical therapist tell me that alcohol was bad for PN because of the sugar, especially in wines or liqueurs. But, then, no doctor has told me to stop eating all sugar. I've not been drinking for the past two months... and I have honestly not noticed any huge difference. I had a glass of red wine with dinner tonight. Just like you, I'm on the downhill slide of my life and I figure I should still enjoy a glass of wine on occasion. I wonder? Are diabetics supposed to avoid alcoholic drinks because of sugar content?
Cheers! 🙂
Mike

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