Working with Neuropathy?

Posted by pfbacon @pfbacon, Nov 24, 2019

Do any of you still work? I’m 68, I was working until last year. I retired because I hurt too much. Doctors diagnosed neuropathy.

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

Hello @pfbacon

While I do not have neuropathy, I do have other health problems that resulted in my retirement when I reached my full retirement age. It is important after retirement to find physical and mental activities that will keep you moving and that will help you enjoy life. As @johnbishop mentioned, do you have hobbies, crafts or other activities that will help you? Also, a lot of communities have senior citizens centers where you can find some activities to keep your mind and body active.

I found a work-at-home job which is quite nice. It gives me an activity that I enjoy and keeps me busy. Do you think that your previous job provided you with skills that you could use in a work-at-home position?

Often AARP has information about these types of positions.

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@jimhd

One thing I felt in those moments was guilt. I know that's dumb, but there it is. It doesn't happen regularly, but when I'm in a big store, I feel the beginning of panic when I become completely disoriented. Lately it's happened while I was driving, and I have to ask my wife where we were supposed to be going. She gets annoyed with me because I'll almost drive past the street or parking lot. Sometimes she hollers at me to turn, or I'll have to make a U turn. On a related level, I can't go into a store without my phone because I'll totally forget why I was there. I'm in trouble if I forgot to add it to my Evernote list, which I do way too often. By the time I get into Evernote I will have forgotten what I was going to write.

I depend a lot on my external hard drive, the one I'm holding in my hand right now.

I'm fairly active, but I had to retire at 55. That was 14 years ago. I was not able to function in my work, and my PCP and the psychiatrist essentially ordered me to retire because I might succeed at suicide. Moving 175 miles was a nightmare, especially for my wife. Because I was so disfunctional, a lot of the work was dumped on her, because I was in bed more often as not.

Gotta go. Pray that I won't get lost.

Jim

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Sounds like you've got a LOT going on in your life. With so many challenges, I am really grateful that you are here for us 🙂

BTW – It is very common for people with DTD to panic when they become disoriented – ESPECIALLY when driving. I've described it by saying 'How would you feel if someone picked you up and dropped you into a completely foreign environment?' Truth is – one moment you are comfortable – know where you are – and the next minute nothing looks familiar. I thought I was losing my mind!

My husband has dyslexia. When I finally had the courage to tell his about my disorientation issues (undiagnosed at that point), he immediately said that it sounded like a form of geographical or environmental dyslexia. Thank God – he is extremely patient with me.

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@iceblue

That's an interesting observation – the connection between dyslexia and disorientation, environmental dyslexia.

When I retired we lived 130 miles from anywhere. It was a 3 hour drive each way, so after a long day of shopping and doctor appointment, it was usually well after midnight when we got home. One night, at around 11, I came to the turnoff toward home – and home was 100 miles away. All of a sudden something weird happened to me, and I couldn't go any further. I know now that I was having a panic attack. We had to turn around and get a motel room. (We crossed that motel off our list of places to stay – disgusting.)

I don't think I was disoriented. I just shut down. It was a really strange feeling.

Being suddenly disoriented is disconcerting, even frightening. I'd never heard a name for it – DTD. In the past ten years I've experienced it numerous times and I hate admitting to my wife that I'm having a brain freeze, and not the kind I get from eating ice cream too fast.

Another way I experience brain freeze is when I'm playing the piano at church. I'll forget what key I'm playing in, or I will jump to the wrong verse (I lead the music service on Sunday evenings). A couple of times I had to stop and start over. My major in college was music with a focus on piano, so that kind of thing shouldn't happen. I wonder sometimes if it's because of a medication, but it's not something new. I warn the people about my brain glitches. It's embarrassing. It could fit under the label of dyslexia, I guess.

Jim

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@iceblue

I am in my early 60's and retired last year. My feet have hurt for well over a decade and I had been medicating in ever increasing amounts with T1's. After many failed attempts, I had given up on getting a diagnosis and/or treatment – but I quit smoking in April and piled on 20 pounds. I wanted to get out and do some walking but told my doctor that part of the reason I don't is because my feet hurt so much – and in fact – the pain had begun to wake me up in the middle of the night. He ordered a nerve conduction test – and here we are.

I also have something called Developmental Topographical Disorientation (DTD) – which means I get disoriented VERY easily. Because of that, I have spent the vast majority of my life in a very limited 'space' (mostly at home!) – so my life is not as outgoing as other's. I read, sew, spend time on the computer, and for exercise – do modified forms of yoga and pilates that will accommodate my arthritis.

Up until very recently, 300 mg of Gabapentin had eliminated the pain from my SFN – but a large dose of stress seems to have completely countered that as my foot pain is as bad now as it ever was. I will manage until I see my doctor in 3 weeks and will be asking for an increased amount of Gabapentin…

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Hi, @iceblue – thanks for sharing about the developmental topographical disorientation (DTD). This abstract of a journal article published in Trends in Cognitive Sciences offers more information on this condition and a link to the full journal text, if you're interested https://www.ncbi.nlm.nih.gov/m/pubmed/27450709/#. Sounds like this is a more newly described condition.

@iceblue – DTD would be a great topic of discussion in the Connect Brain & Nervous System group, https://connect.mayoclinic.org/group/brain-and-nerve-diseases/, if you'd consider starting it. I think others may also have this condition and benefit from finding support. Directions for starting a new discussion are found in the Get Started on Connect section at the bottom of every Connect page https://connect.mayoclinic.org/get-started-on-connect/.

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Thank you Lisa 🙂 I will check out the info on starting a new topic. I just know that for years (decades), I knew something was wrong, but couldn't quite put my finger on what it was. And it does make for a pretty lonely life because you are limited in where you can go…

FYI:
https://www.ncbi.nlm.nih.gov/m/pubmed/20431873/?i=2&from=/27450709/related
* Dr. Iaria, the author of this article is the Researcher at the University of Calgary where I went through my testing. I have not actually met him, but have interacted with him via e-mail.
https://www.ncbi.nlm.nih.gov/m/pubmed/27923326/?i=3&from=/27450709/related
* This is the published study my sister and I were included in. I have also exchanged e-mails with the author (Stacey Barclay)

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@iceblue

So young!!! I hope you are able to work for as long as you want to! You are very wise to be exploring your options and establishing a Plan B.

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Good morning, @iceblue, My memory check tells me you have a medical appointment today. Was this the one with your GP for pain management? Please let us know the results. I will be watching for your post. I hope today is free of suffering for you. Chris

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Thanks for the follow up Chris! I saw my doctor on Friday, and he has given me a 3 month prescription of Gabapentin that indicates I can take up to 600 mg/day. I have been taking 400 mg/day for the past week, and will stay on that for at least one more week before considering an increase in my dosage. My feet are still very painful, but I have noticed that the pain in my hands, arms, and calves has settled down. I am supplementing with T1's a couple of times a day, and although I'm disappointed to be taking those again, it will only be until I land on the right dosage of Gabapentin….

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