Working with 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.

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

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...

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

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 🙂

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

@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

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

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.)

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.