Psychological effects of living with neuropathy

Ah, Chris, after all these years, I can still taste the deep-down glorious afterburn of a short glass of JD Special Select! Those were the days, Chris. I'm glad they're over, but those sure were the days! 🙂

Peace and pleasure to you, too, Chris!
Ray

I hear all of y’all,so good to see and read your input.
I’m @83 yrs. Last chemo was 8 months ago. 6 in.of sigmoid removed after stage 3 colon. Now ! Numb and tingling hand and feet,no pain…tried gabapentin no luck.finally Igot an appointment with a neurologist that scheduled a nerve conduction study and electromyography test.(upcoming) in the meantime I’m psychologically damaged. Those around me seem tired of my wining, so ! Now I avoid them. Maybe 🤔 I’ll go fishing.

It's hard, pcallier, I know, to talk about one's health and not think that others are considering it whining. I try not to go on and on about my own health, but it's a challenge. If I were to be perfectly honest, my health is the No. 1 thing on my mind––or if it's not No. 1, it's darn close. That's why I find the community here at Connect to provide such relief. Here, we can let go and talk as much as we like about our health––doctors, medications, therapies, old aches, new aches, good days, bad days, all of our many ups and downs.

But fishing? Mmm? That sounds like a good idea! 🙂

Cheers!
Ray (@ray666)

Hi @domiha just wanted to add my support. There is no way you can have an illness like this that disrupts your whole life and not feel depressed and despair at times. I think it’s normal and you shouldn’t feel bad because you feel like this sometimes. I think it’s part of the grieving process. This is a huge loss. I can barely leave my house anymore And my medication‘s and my symptoms basically rule my life. I cope by taking courses online and studying some of the things I wanted to do when I was younger, but couldn’t because I was busy supporting my family. Now I can do whatever I want within limits of course. Sometimes I think it’s a small comfort because I’d rather be working. I just forget about the past and try to take every day as it comes. Some days I’m in bed all day and other days I can move around and do a few things around the house. I actually think the worst part is the isolation and the lack of understanding of this illness. We’ve all been there. Hang in there. Try to come up with creative things that you really want to do. Maybe stuff you couldn’t do before. And I haven’t been on this site for very long, but I think it’s perfectly OK to whine. Sometimes we just need to put things out there and we feel a little better. I hope you find a new passion in life take care. I am sending love and support.

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.

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?

I too was diagnosed about the same age as you. It’s now 13 years.
Nothing wrong with occasionally feeling depressed about it. Then we pick ourselves up and do our best to stay positive. This will help a lot because neuropathy is more painful when you have anxiety. Welcome ! I’m new as well.
There are very knowledgeable people here willing to help. Never give up ! Best to you.
Keep fighting 💪🏼🫰🏼

@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.

I could have written your comment- same symptoms, same diagnosis, same epidurals, same surgery, same results. My PN “journey” started with a herniated disc when I was 64, am now 70. This is cold comfort, but as I get further away from the dividing line between life before and after, I find I focus a lot less on the PN, it’s just “me”. Now it’s automatic to do all the little adjustments needed to be safe while doing anything. I’ve already dropped the activities that are unsafe- no playing badmitten with the grands, but red light/green light on the paved driveway is fine. I can’t take them canoeing or hiking (which I loved), but we camped this summer at a cabin (steps with a rail, cots) and to an amusement park (paved pathways, plenty of benches). Without even thinking about it, you think things through and make the adjustments needed.
I do regret I didn’t do more in retirement of the outdoor things I enjoyed, but who knows what lies ahead in life. I did spend the 5 year anniversary of the dividing line in a big soup of whine, there is a lot to mourn. This group is great, people really understand. Ray really means it about that big comfy chair.

Very well said!!! Myself? I was diagnosed with idiopathic Small Fiber Neuropathy 3 years ago. But early symptoms led me to 3 different podiatrists. My feet hurt terribly!!!! So you go to a podiatrist. Right? Misdiagnosed 3 times which led to 3 different USELESS surgeries!!!! On to the neurologists. It took the third one to recommend a skin biopsy to rule out SFN. Unfortunately, it came back positive. He seemed surprised!! Then prescribed horrible medications that help only minimally. My primary care physician always asks about my depression. My response is always that it depends on my pain level. Which is almost always high.
24/7. I’ve tried some antidepressants along with either gabapentin or Lyrica. They are horrible!!!! They mess with your head and do little for pain.
So are you whining? You’re entitled to whine. No one can really understand what we go through on a daily basis. It’s truly debilitating, and hard to accept. I was very active and athletic prior to my first symptoms. Skiing, hiking, tennis, you name it, I was good at it!!! That was all taken away literally overnight. I was forced into early retirement and live a very sedentary life which I wasn’t built for. So am I depressed? You’re damn right I am!!!! It’s been almost 7 years, and to be honest, I’m pissed!!!! My wife is the only one who REALLY knows the pain I feel everyday. Friends don’t understand why I don’t want to participate in certain activities. They see I can walk, but they don’t feel the pain I feel. Even simple activities are overwhelming.
So whine away!!!!
I know what you’re going through.