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DiscussionPsychological effects of living with neuropathy
Neuropathy | Last Active: Dec 1, 2023 | Replies (106)Comment receiving replies
Replies to "I was just crying a little this afternoon. I’m one of those who has no idea..."
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 💪🏼🫰🏼
I am 49 and was diagnosed with lumbosacral plexopathy in July (which is a rare form or neuropathy). It started with extreme weakness, numbness and pain in my upper legs to the point where I would collapse and could barely walk. As the months have gone on, the numbness and tingling have extended down my legs and into my feet, up into my torso and into my hands. Now my neurologist says these symptoms don't fit the original diagnosis and he has no idea what I have. Thankfully, back at the beginning of August, I contacted the Mayo Clinic about a second opinion appointment and was granted one in November which was the soonest they could get me in. I am hopeful they can figure out what is going on with me. Pain is mostly under control with gabapentin, but I always have a degree of pain that I have just learned to live with. Pain is much worse at night, and sometimes I can't sleep. I can walk but I use a walker when out in public (I don't go out very often because I am so scared of falling and I feel ashamed that I have such obvious physical limitations and have to use a walker). Stairs are incredibly difficult, which is nother reason I don't leave the house unless I have to. I have been receiving high dosage IV steroids every 2 weeks which help for about 5 days and then I go back to where I was.
Anyway, I agree that the psychological side is incredibly hard and many times, harder than the physical side. My son is a freshman in college and it was family weekend last weekend. I was able to visit him and see his dorm, but I realized over the weekend that there is so much I can't do because of my disability. So I spent a lot of time sitting in the car or the hotel while my family went shopping, hiking, exploring the campus.... and I was so depressed that I couldn't enjoy the things I used to take for granted. My depression also stems from what my condition is doing to my kids and husband. I feel terrible that they have to help me with so many things and I can tell my daughter is embarrassed of me. I can't really blame her.
I just recently found Connect and I am SO GLAD I did. I have been searching for a place to read about other's expereiences and share my own in hopes of feeling support and also learning some things along the way. Hang in there @danamw73 - I hope you can find some comfort from this group. And whine away! I completely understand!!
I feel your pain, I’ve been dealing for 12 yrs now, and I’ve had enough!
Hello - I would like to connect with you. I feel I’m in the same boat as you in a way with 2 kids and a full life to live. I do not know how to move forward with this. Is there a way to message you directly?
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?