Living with Neuropathy - Welcome to the group

@penn, You reminded me of a time when it seemed like every night, I had a body jolt in my hip area that almost lifted me out of bed. It wasn’t painful, but just one weird spasm as my body was getting near sleep. It went on for at least a year and I couldn’t figure it out. I also have no idea how it stopped, because until reading your post, I didn’t realize it no longer happens! I hope yours resolved soon!

I have had periods where I had random twitching when I tried to take a nap in the daytime. As I relaxed, it would suddenly stop. This same twitching would also occur when I was sitting, using my hands, etc but not as strong. It was very strong for a while, but has diminished with time. Who knows why? I’m sure it will be replaced by some other weird thing!

Thank you for providing this group. I have what has been diagnosed as ideopathic Neuropathy in both feet as well as arthritis. Any suggestions to control the pain?

Good morning ona snowy day in Chicago area.
I am GardenerBob. Having just join the neuropathy group just now l wish to introduce myself. As my name implies I am an active gardener but not ine typical sense. I am a nature gardener striving to bring a nature like environment to an urban yard.
My neurology is genitic and as I age an increasing “limitation” to my outdoor activity. Particularly in balance. I wear braces most days due to foot drop and when walking distances use hiking poles, particularly on uneven surfaces. Have fallen many times with no injury in the garden.
My outlook is positive, have done physical therapy to improve leg strength and balance. This I would encourage all such neuropathy suffers to avail themselves. A good therapist is a valued life partner. Regular exercise for strength and flexibility is important.
As is weigh control with good dietary practices.
Peace and joy to all, GardenBob

Hello @stewie4215 and @gardenerbob, I would like to welcome you both to Connect.

@gardenerbob you are so spot on about maintaining a regular exercise program and flexibility being important along with weight control and good nutrition. @stewie4215 you asked what can you do to control the pain. We have a lot of existing discussions that you both might find helpful in the Neuropathy Support Group. Here is a link to the discussion group with a list of all of the discussions: https://connect.mayoclinic.org/group/neuropathy/.

The Foundation for Peripheral Neuropathy also has a lot of helpful information here: https://www.foundationforpn.org/living-well/

Hello, Gardener Bob! (@gardnererbob)

I want to welcome you to Connect and to the neuropathy forum. I’m hardly a long-timer. I joined only a little over a year ago, about the time I received my diagnosis. I’m 78 and was diagnosed with idiopathic peripheral neuropathy in the summer of 2022.

Like you, I do all I can to maintain a positive outlook. I like how you call yourself “Gardener Bob”! That alone suggests a man with a super positive attitude. I’ll have to confess, however, that I’m not a gardener. My partner is, though, a high-octane gardener; at 81, she still does phenomenal things with an English garden. She’s spoiled me. She lets me sit in the garden and do little else but admire her skill and hard work. 🙂

A closing note on my neuropathy: I’m fortunate in that I have no pain; only balance and git-around difficulties. I’ve done lots of insurance-covered PT (with so-so success), but today make do with balance and leg strengthening work around the home. I look forward to seeing you around the forum.

(Snowy in Chicago, eh? Flurries on and off here in Denver; darn cold, though.)

Cheers!
Ray (@ray666)

I have found ice therapy to help a lot. Also I carry Mountain Ice with me for quick temporary relief

I have Type 2 diabetes. Well under control. Except for neuropathy in the feet raising it's ugly head. Taking Gabapentin which controls it relatively well. I've had abdominal surgery recently and I've been sitting a LOT more than normally. Tingling and going to sleep has increased tremendously. When I'm up and moving its a lot better

I'm puzzling over a double whammy. I’m posting not because I’m looking for a snap solution, but only on the chance that another of you out there may have faced the same dilemma.

I have idiopathic PN––no pain (thank goodness!) but balance difficulties, especially in low light and unfamiliar surroundings. That’s Whammy No. 1.

Whammy No. 2 is a nagging bladder: every 20 or 25 minutes it seems I have to “go” again. (I’ve tried Flomax but it hasn’t helped.) What’s the dilemma, you’re wondering? My partner and I have always enjoyed going to the theater: movies, plays, and concerts. We haven’t been to the theater since the onset of my PN. An auditorium environment can be a challenging place: low light, unfamiliar surroundings, and––thanks to a nagging bladder––a need to hop up (darn near impossible for a guy with PN) and go to the restroom.

I realize this is not The Crisis of All Crises, but my partner suggested I ask on Connect; “You never can tell,” she said. “Someone may have already found an answer to this ‘Living with PN’ question.” (I'm smiling even as I ask the question.:-) )

Ray (@ray666)

HI Debbie, I'll seeing my Neurologist next week and I will be asking him about that. I hope there is a reason because nothing makes sense anymore. Just Chronic pain!!!
I wish you the beat!