Living with Neuropathy - Welcome to the group

Welcome @decrepit, Such great advice about doing some homework prior to getting treatments for neuropathy. There are a lot of businesses out there selling hope in the form of a cure for neuropathy when there is none. We just have to find something that provides relief from our neuropathy symptoms.

@duquer also shared his story of how Sanexas helped him and may have some thoughts or suggestions. He shared his story here - https://connect.mayoclinic.org/comment/645606/.

You mentioned PT treatments. Have you had any PT sessions to help you work on strength building?

Welcome @sunshine4me, I'm sorry to hear you have CRPS that seems to be getting worse. There is another discussion which I think you might find helpful on CRPS.

-- Want to talk with others. Have you found relief from CRPS?
https://connect.mayoclinic.org/discussion/crps-2/.
Have you looked into any pain management programs?

Hello @partner, Welcome to Connect. I love your statement - I am 86 years young. Attitude and gratitude are everything when battling long term conditions. The Foundation for Peripheral Neuropathy has a list of supplements that have shown to be helpful for neuropathy here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf. The supplements are listed at the end of the document. They also have information on living well with neuropathy that you might find helpful here - https://www.foundationforpn.org/living-well/.

It sounds like you already have a great daily exercise regimen. There is another discussion you might find helpful if you want to add some strength training.
-- Strength training: How-to video collection
https://connect.mayoclinic.org/discussion/strength-training-how-to-video-collection/.
You mentioned it's hard for you to purchase an Alpha Lipoic Acid supplement. Are you able to order supplements online and have them shipped to you or do you have to drive somewhere to get them?

As a retired 41 years in healthcare, I followed my health care team recommendations to the letter. Wilde physical therapy was good to keep my muscles, someone stronger, physical therapy, and no affect on the neuropathy, pain, pins, and needles etc. I found that undergoing the Sanexas treatment it gave me some very good results.

I was told I had CRPS which expresses itself with increasing numbness and painful tingling in my lower extremities. How can I beat this?

...to continue to give a picture of the last 4 years, I've also been told I have idiopathic small fiber neuropathy.
I've had trouble with my spine (scoliosis since adolescence) which finally lead to severe pain that did not respond to my various non-surgical treatments over the years, so a little over a year ago I had an ALIF/PLIF spinal fusion S-1 to T-10.
I am an active 71 year old female. I'm finally back on the tennis courts with my friend, but I numbness and pins and needles pain can be difficult at times. I would like to stop taking the medications I've been prescribed, but the pain is to great to try to ignore.

My feet are numb and my balance is very bad. Does it ever go away?

Welcome @chawkers, Does it ever go away is the question that I don't think anyone can answer. I'm not a medical professional but I think the key is to live each day the best you can and seek answers and treatments that will provide some relief for your symptoms. I have numbness with my neuropathy but no pain and have had it for over 20 years. My balance is not very good but I try to work on it as much as I can. There is another discussion that you might find helpful if you only have numbness:
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.

Here's another site you where you might find some helpful information:
--- Living Well - The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

Are you able to share a little more about your diagnosis and any treatments you've tried?

I lost the use of my legs last MAY. This followed a tremendous spinal pain in the middle of the night, I shouted, I cried. I can transfer in/out of my wheel chair. I cannot stand or walk. One Dr suspected CAUDA EQUINA. My spine clinic went ballistic when I mentioned this. The Dr. Lied and said that CE was never mentioned with her, after spelling CAUDA EQUINA on the back of her business card. My pain clinic has spent hours trying to convince me that all my problems result from NEUROPATHY. I may try the Mayo Clinic for a diagnosis.

Has anyone lost the use of their legs from Neuropathy?

I did, rather suddenly from idiopathic PN. My legs felt weak and heavy one day then when hospitalized 10 days later because my balance was in danger, I finally fell and couldn’t get up (for 6 months). I was transferred to a nursing home/rehab center in a wheelchair, where I had a great pair of PT’s helping me start over with my feet and hands. It was hard work, and after a month was sent home, where I had therapists in my home a few days a week, and plenty of daily exercises. That transitioned to outpatient PT, which at the 6 month mark from onset of PN, I was back on my feet (mostly with walker for safety), but walking unassisted inside my home. I was able to start driving! They helped me so much get strength, learn to balance, and ways to cope and improvise as my condition needs for me to be able to do things. I suppose by all counts my Neuropathy itself didn’t improve, but I made muscles stronger and had a lot of forced standing so I could literally get back on my feet. 6 years later, I could probably walk or shuffle a mile unassisted, though my legs and knees would tire. With that said, it is imperative that I keep exercising, moving, and maintaining strength if I hope to offset any deterioration, if that is to come.