Working with Neuropathy?

Posted by pfbacon @pfbacon, Sun, Nov 24 7:42am

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.

@pfbacon, I'm 76 and still working full time although I am retiring at the end of the year. I've had neuropathy for 20+ years but only bothered to get it diagnosed in 2016. I have normal old folks aches and pains but don't have any pain with my neuropathy. I also have been fortunate enough to work from home for the past 20+ which helps. Sorry to hear you had to retire due the pain. I think working at anything – job, volunteering or keeping busy with a hobby or something you like doing is important for your overall health. Hoping you can find something to do that can help you keep your mind off of the pain if that's possible.

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I do stay busy – it's funny how we get busier after retirement than we were when we were working. I run on the beach every day (it helps with the pain and fitness and I love it out there in that salty world), I go to the gym, bike when weather permits, I'm writing my autobiography, I have a couple of hobbies: sewing and making things out of the sea glass that I find on the beach, having lunch with friends, a few games of cribbage every night with my husband, housekeeping which I hate but I do it, I keep in touch with old friends on facebook, and I confess that I do a little recreational shopping. By the end of each day, I'm too tired to finish a sudoku puzzle. Peggy

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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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@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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Good morning @iceblue. Thank you for sharing your current health status. You have dealt with some pretty heavy challenges recently with your brother's passing and your mother's need for care. Do you think that those two stressors have had an effect on your increasing pain? Did you share them with your doctor?

Have you considered adding an anxiety medication like Cymbalta in the morning? I found that really helpful when my life partner was going through 7 weeks of radiation and then I flew home for the close on my mountain home of 20 years and emotional farewells to my village.

You introduced me to something, DTD. I think my friend Mikki has that….she can never find the way to her hairdresser and lives in a shrinking physical world. It does seem like more of our issues now have a clinical name and are treatable. The medical world is certainly changing.

Would you please share with me when you take the Gabapentin. A dose of 300 mg is about the minimum you can take. In my case, I have a reaction to that medication during the daytime. I increased my dose from 900 mg to 1200 mg at about 8:30 pm after the move. It reduces the SFN tingles and needles in my hands and helps with sleep. During the daytime, I prefer medical cannabis to manage the SFN symptoms. Are you using any topicals for your feet?

It is just great that you continue your exercise program. Do you start your day with a hot shower? That can feel very good. Check in with me…… I am right here.

May you be free of suffering. Chris

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@artscaping

Good morning @iceblue. Thank you for sharing your current health status. You have dealt with some pretty heavy challenges recently with your brother's passing and your mother's need for care. Do you think that those two stressors have had an effect on your increasing pain? Did you share them with your doctor?

Have you considered adding an anxiety medication like Cymbalta in the morning? I found that really helpful when my life partner was going through 7 weeks of radiation and then I flew home for the close on my mountain home of 20 years and emotional farewells to my village.

You introduced me to something, DTD. I think my friend Mikki has that….she can never find the way to her hairdresser and lives in a shrinking physical world. It does seem like more of our issues now have a clinical name and are treatable. The medical world is certainly changing.

Would you please share with me when you take the Gabapentin. A dose of 300 mg is about the minimum you can take. In my case, I have a reaction to that medication during the daytime. I increased my dose from 900 mg to 1200 mg at about 8:30 pm after the move. It reduces the SFN tingles and needles in my hands and helps with sleep. During the daytime, I prefer medical cannabis to manage the SFN symptoms. Are you using any topicals for your feet?

It is just great that you continue your exercise program. Do you start your day with a hot shower? That can feel very good. Check in with me…… I am right here.

May you be free of suffering. Chris

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Thank you Chris! Actually – the pain in my feet is somewhat reduced since coming home from my Mother's – but it is still bad. From my involvement with this group I knew that 300 mg was a very low dose, but I was not going to question why it was taking so little to eliminate the pain – I was just going with it 🙂

My medical situation is in flux right now. I'm kind of between doctors – and will actually have TWO for a week as I say good-bye to one and hello to a new one. One way or the other though, I will speak to them about how to manage the pain, and I suspect increasing Gabapentin will be the way to go.

I am not feeling a need to manage my anxiety now that I am away from my mother. I am, of course, still grieving the loss of my brother – but that can happen in a healthier way now. Emotionally, I am stable except for moments of grief when memories sneak up on me.

As for the DTD – I cannot tell you what a relief it was to finally stumble on the website (gettinglost.ca). I have been an active member of the research being conducted at the University of Calgary. On top of the online tests that are available, I spent an hour in an fMRI and another hour undergoing neurological tests. My sister has also been involved, and we are documented in one of their (published) papers on genetic linkages in DTD. And yes – I used to get lost in the schools I attended or buildings I worked in, and have always had to take the same routes to places I frequent such as school, work, shopping, or friend's homes. It's a condition that can result in a very small life. The online world made many thing available to me that others take for granted – such as socialize and education 🙂

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So grateful for your encouraging response. And thank you so much for the DTD research. That is my friend…..shrinking world. Are you changing doctors for a new specialist? Chris

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@pfbacon

I’m glad that you asked this question as I’ve been wondering about it myself. I just turned 37 six days ago and I’d really like to work for at least 20 more years. I’m not in pain right now, but I’ve been looking into potential online jobs in the event that I begin to experience pain that forces me to end my career as a school psychologist.

I’d also like to thank you for sharing your hobbies, activities, and interests. I often wonder what everyone does to enjoy life or distract from pain. I too love that salty beach environment and I’m actually heading to Florida tomorrow for that very reason. 😃 Thanks again and take care.

Kia

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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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@artscaping

So grateful for your encouraging response. And thank you so much for the DTD research. That is my friend…..shrinking world. Are you changing doctors for a new specialist? Chris

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I will not be seeing a specialist again – at least, not in the foreseeable future. A Neurologist did the testing and provided a diagnosis, but he sent me back to my GP for monitoring and pain management. He did say I could come back if I had further issues, but I suspect by the time that happens I will need another referral. (In Canada, we cannot see specialists without a referral from a GP.)

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@klro0001

@pfbacon

I’m glad that you asked this question as I’ve been wondering about it myself. I just turned 37 six days ago and I’d really like to work for at least 20 more years. I’m not in pain right now, but I’ve been looking into potential online jobs in the event that I begin to experience pain that forces me to end my career as a school psychologist.

I’d also like to thank you for sharing your hobbies, activities, and interests. I often wonder what everyone does to enjoy life or distract from pain. I too love that salty beach environment and I’m actually heading to Florida tomorrow for that very reason. 😃 Thanks again and take care.

Kia

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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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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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