Living with Neuropathy - Welcome to the group

bcool123
Have you considered getting Orthotics made from a podiatrist?
I had some made at least 30 years ago and paid $400. Wonder what they cost now?? They helped me.
Jake

NJH, I had my covid shots in January. After my second one I had a reaction but it was like having flu symptoms. It only lasted two days. I do not think it is the vaccinations that have caused this. I am taking a statin drug so I stopped it. I feel like all of mine is somehow related even though I am not a doctor. I am keeping a running diary on what is happening to me in case I have to go to the ER. That way it doesn't have to be explained. I have another appt. to go back to the eye Dr who is a neuro/opthamologist. He had checked my eyes and said no damage so we will see what he says this time. You can get dry eyes with SFN but I looked at the symptoms and I don't think it is dry eyes. I think mine is related. I am going to see about a second opinion. I believe I have SFN I just want to get more information then what has been given to me. I thank you for sharing your story. I joined this to communicate with other people and thought it might help me. My neuro doctor said he has not heard of any people with eye pain. You are the second person that I have heard of that has had eye pains. The doctor said that I am the second patient that said my symptoms came on overnight full blown.

I have perrephial neuropathy and can no longer walk because I am numb up to my ankles. I stopped driving 5 years ago. I also started having the symptoms in my hands and now I have very little use or control of them. The pain is off the charts almost 24/7. Nothing seems to help. Anyone else have issues with their hands? Does anything help you? Thanks.

Holding off I’m going to a podiatrist because I know they will want to give me orthotics and I can’t afford them right now because I’m having asbestos issues under my house!

Hello @gizzmo48, Welcome to Connect. Sorry to hear you have not been able to find anything to help with the pain. I have some minor pain in my hands due to carpal tunnel and I also have small fiber peripheral neuropathy in my feet but I don't have any pain with them just some numbness. I try to do some hand exercises daily to keep some flexibility in the fingers, hands and wrist. It does help with the stiffness. Have you had your hands checked for carpal tunnel syndrome?

bcool123
Asbestos, that sounds like like an expensive fix. I wonder how much orthotics cost now days. To much I’m sure.
Jake

In reply to gizzmo48.

Interesting combination of symptoms! There are supposedly 100 different varieties of peripheral neuropathy, each with a different combination of symptoms--but no distinguishing names, so understanding and comparing experiences is complicated, but still worthwhile.

Just because you have one disorder doesn’t mean you don’t have another one, as well. My first round of significant hand disfunction 5 years ago turned out to be caused mainly by cervical spinal stenosis (big operation, long recovery.) Last year when it was getting bad again, the cause was carpel tunnel—aggravated/caused by underlying peripheral neuropathy (small operations, long recovery). I still have trigger thumb on and off since, with residual weakness and pain, and have started to develop Dupuytrens contracture. I’m losing ground now, but continue doing my PT hand exercises, so can still play ukuele and fiddle for entertainment, socializing and stress release, even though I can’t tolerate piano anymore.

SOME QUESTIONS TO CONSIDER:
-What kind of doctor do you have? (GP? Neurologist?)
-Do you have a diagnosis? Is your caregiver sure that all symptoms have the same cause (neuropathy?)
-Have you had nerve studies such as emg/nerve conduction or nerve biopsies?
-Are you getting physical/occupational therapy?
-What are your goals?

I’m curious about how you’re getting around. I was shocked that my neurologist recommended a walker when my neuropathy was diagnosed. But after the shock wore off, I tried it, and love that I can “feel” the ground through my hands and safely continue with exercise walks. (If you try a walker you should get foam pads for the handles to protect your hands from vibration, as vibration can aggravate carpel tunnel and hand neuropathy.)

Wishing you good luck with seeking relief and doing the hard work required to live well with neuropathy.

I just spent two hours with Andrew at the Boulder running company in Colorado Springs. He fitted me with a pair of women’s New Balance 940s which have the widest toebox of anything we tried. Wider than the Hokas. Ended up adding a insert for padding and arch support for my plantar fasciitis. I gimped in and walked out. Now my neuropathy is happy and my plantar fasciitis is getting happier. Please post this wherever it needs to go for people asking about shoes. I really appreciate all of the information and suggestions I’ve gotten off of this site. Keep up the good work and good luck to everybody.

About 7 years ago I had SCT. Did nothing but cost me $8,000. I'd pay double if it would work.

Hi Julkun. Yes, It would be worth an enormous amount of money to be normal again. I had a similar experience with the Physical Therapy Dept. at Loma Linda, a respected 7th Day Adventist Hospital in San Bernardino County in Southern California, with a Medical School and Dental School. They actually advertised they could cure neuropathy, but they failed, just like Chiropractor's, at a cost of $6,000+. That was about 4 years ago. But when I read about others problems, I feel very fortunate to have almost no pain, and can still drive at 93.
BillU