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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: 14 hours ago | Replies (610)Comment receiving replies
Hi, I'm Angela. I'm fairly certain I've had neuropathy since I was in my early 20's ( burning feet, big toes were numb) but was told that it was due to bunion surgeries and then getting pregnant shortly after that. Fast forward to 41, I finally saw a neurologist and he has basically confirmed that it's neuropathy and I am terrified. I had a period of time that I was dealing with some mental health issues and gained A LOT of weight being on antidepressants. Two years ago I finally decided to take myself off after I really didn't like how I felt and was diagnosed as Type II diabetic in Oct 2024 (which I still think was wrong since I have never had a blood sugar even close to what was in the fasting lab). I've lost about 80 pounds since that Oct diagnosis and my labs are perfect. Despite that I've seen more symptoms that have now moved my fingers to go along my feet that have been numb/burning/tingling for years.
I have an EMG scheduled for June and regularly see a chiropractor to which both the chiro and neurologist have said there are very few options for me as this is likely hereditary due to the age this started (and I was in amazing health at that point) and several relatives having it. I will not go back on antidepressants as I'm a firm believer that those extended my mental health issues but will start taking ALA. I can live with the pain that I'm in while it's not fun but I'm so scared I will completely lose my mobility. I am still young as all the women in my family have lived past 100 and my daily workouts have significantly improved my mental health. I have a young daughter that I need to be active for and am also very nervous that I will pass this along to her. I really try to be upbeat but after all I've battled through I'm very discouraged I could lose the lifestyle I've fought so hard to get back to.
Replies to "Hi, I'm Angela. I'm fairly certain I've had neuropathy since I was in my early 20's..."
Hi Angela @amh08, I would like to add my welcome along with @gus0557 and others. I am so glad that you found this site and connect with others with neuropathy. So many of us share the same concerns as yourself and it's difficult to deal with in the early years, especially at your young age and with a young daughter. What has helped a lot of us is learning as much as you can about the condition and what treatments are available that may provide some relief. What works for one of us may or may not work for others.
I think it's fantastic that you have lost 80 pounds since your diagnosis and have good labs. Losing weight was key for me also. Now at age 82, I just focus on staying mobile and exercising daily. I shared my neuropathy journey along with other members in another discussion here - https://connect.mayoclinic.org/comment/310341/.
If you haven't already found the Foundation for Peripheral Neuropathy website, it's a great place to learn more about neuropathy and what helps - https://www.foundationforpn.org/living-well/. You also might want to scan through other discussions in the Neuropathy Support Group to find more answers you have - https://connect.mayoclinic.org/group/neuropathy/.
Welcome, Angela (@amh08)! So much of what you describe recalls for me the early days of my struggling to make a place for neuropathy in my life. Like so many of us, I found myself reaching out to others (doctors, books, YouTube vids), crying in each instance, 'Help me! Please, won't you help me?' What I found terrifying (and it was terrifying at first) was not only was no one drawing closer to help me, they were stepping back, receding, slowly fading into the background––at least that was the sensation. It wasn't until I realized that the reason no one was stepping forward was because they had nothing to offer and it was troubling them as much as it was troubling me. It was at that moment (about two years ago) when I realized that it made far less sense to be reaching out for help but much more sense to be reaching within. The frame of mind I put myself in nowadays when I go to see one of my doctors is not that of someone pleading for help but of someone saying to the doctor, 'I'm working as best I can to manage my neuropathy. I know you don't have a magic cure-all pill that you can give me, but I'd welcome any suggestions you might have. The way I look at it, you and I are teammates in this neuropathy business.' It was at that point that I realized I can survive my neuropathy. I can't make it go away; it's mine for keeps. But I can survive it, and live my best possible life in spite of it.
I wish you mountains of success, Angela, in dealing with your neuropathy!
Cheers!
Ray (@ray666)
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Hi Angela,
First, sorry for all you're going through and hope you'll get more answers. From reading about hereditary neuropathy, there are specific tests that need to be performed including genetic and family history check. The EMG will confirm your condition but I am not sure how much it will tell in reference to heredity. i just had an EMG/nerve conduction test last month which confirmed my condition and added cervical and lumbar radiculopathy. I just hope you have a knowledgeable and compassionate neurologist to help you through this. Please do also focus on the psychological aspect of your condition and surround yourself with a good positive support group. It is really vital.
Hang in there and I wish you the very best. Take care.
gus