Neuropathy symptoms are worse when I sit or lay down: Anyone else?

Hi - I’m not sure what type of neuropathy you have, but I can’t take a long walk or dance either. I do find lying down provides a certain type of comfort and relaxation, to a point. I find the longer I’m down, the stiffer I am when I get up, and the longer it takes to get loose and get my balance to take my first step. Once up, it gets easier and I find new comfort in walking/waddling around to get things done. Unfortunately, Ivan only stand for so long and must take frequent sit breaks, but I find I need both rest and activity for my neuropathy relief and need to strengthen when I can. I hope you find the right balance!

To clarify my comment about going for a walk and dancing, I have had my PN since 2005. Brought on by a severe case of shingles in my left leg misdiagnosed and mistreated by three doctors. A dermatologist finally helped me after four months of misery. I then developed RA and reached a point where I almost couldn’t walk at all. Then I found my rheumatologist who is a gem and has helped me so much. I thank all the good doctors out there. I also love my oncologist who is a good doctor and a good person. Who congratulated me on eight years free last week.

I do the same with the waddling around. I work 4 hours everyday and manage but worry about when I can’t do that anymore. I know the time will come. I’m getting older and I’m single. Kids are busy with their own family situations with little time for me.

We get more and more common to an extent! I got shingles 4 yrs after my neuropathy onset , in my arm along an already surgeries ulna nerve, and WOW was the shingles a neurological setback! I like your rheumatologist comment - I have yet to seek one out, but have heard others use them and am thinking it may be worth a try! Congrats on 8 yrs cancer free! I am 1 yr throat cancer free, and treatments set neuropathy back a bit, but like shingles, and later the shingles vaccine, spaced around my Covid vaccines, I am back to my “normal “ unexplained neuropathy level!

Congratulations on your one-year free. Keep up the good work. Life is indeed strange and takes us in many directions. God bless.

Have any of your doctors said what brought on or caused the neuropathy?

I’m not sure if the question is for me, but no clue. 5 yrs ago I was admitted with a UTI at the same time coincidentally, but bloodwork didn’t show GBS. All they did was bloodwork in SC. I’ve since moved to NC and I got sidetracked by having to prioritize cancer treatment, something that showed up in a test in SC, but they sat on that report without telling me and I accidentally discovered it in a report as I was moving 8 months later. Anyway, I’m now advocating more strongly for help understanding this 5 yr neuropathy. I recently had a nerve biopsy confirming severe atonal loss (no cause given) and waiting for a second opinion on meaning of some small inflammation found. My current neurologist will not do an MRI because he doesn’t think it will tell us anything. That too will be discussed with my 2nd opinion. Otherwise, my current neurologist has not offered up a next diagnostic plan, seems he thinks the quest for answers is time to end. So I’m keeping my eyes and ears open, trying to learn, and live with whatever… there are so many positive, knowledgeable, and helpful people here.

I want to write something about caring children, but i won't. What type of medical advice have you received from your doctor?

Can you identify good neurologist in North Carolina?

At the current moment I cannot. Since I moved here with the surprise cancer diagnosis, oncology was priority and neurology took back burner, and unfortunately, I got the short straw with my current neurologist. He’s not very organized, gets information mixed up, and loses reports. I sympathize with the toll Covid has put on medical offices, but this is a little deeper I think with him. So I have a 2nd I’m scheduled for next month, so I’m not sure of him yet. The problem as you probably know is that it can take 4 months easy to get scheduled as a new patient with specialists anymore. I have had great luck with Atrium Health in other specialties I’ve visited, so am hoping Neurology can prove to be the same.