Looking to connect with people who have non-diabetic neuropathy

I was diagnosed with peripheral neuropathy 10-12 years ago. If worsened after tkr in 2016z BC came along in 2020 and I went on plant based diet and lost 50!lbs., My neuropathy was so much better… almost gone after being pretty tuff.,during this time I was taking harmony therapy for my cancer. End of January I had Phizrr vax. I immediately started having more pain in feet legs and hand was completely useless . I had many other reactions. I decided it was the hormones therapy snd quit taking it in Fed most difficult effects went away but my neuropathy got worse I have to walk with a cane snd cannot bare long pants or skirts to touch my leg . Shoes must by open and no socks., no covers on my legs at night either. It just keeps getting worse. I’m thinking it must be a different side effect of the vaccine there is no
Other reason got me to be a cripple

I was diagnosed with peripheral neuropathy 10-12 years ago. If worsened after tkr in 2016z BC came along in 2020 and I went on plant based diet and lost 50!lbs., My neuropathy was so much better… almost gone after being pretty tuff.,during this time I was taking harmony therapy for my cancer. End of January I had Phizrr vax. I immediately started having more pain in feet legs and hand was completely useless . I had many other reactions. I decided it was the hormones therapy snd quit taking it in Fed most difficult effects went away but my neuropathy got worse I have to walk with a cane snd cannot bare long pants or skirts to touch my leg . Shoes must by open and no socks., no covers on my legs at night either. It just keeps getting worse. I’m thinking it must be a different side effect of the vaccine there is no
Other reason got me to be a cripple

@arnrob, @marinelastef, @johnbishop and anyone else on a journey through the progressive condition of idiopathic polyneuropathy and idiopathic small fiber neuropathy. You asked to know what works for me. You may want to look back at some of my other posts for specifics. However, things change and now, after about 8 years, I realize that I need to modify and change treatment options as my pain increases in intensity and frequency and my mobility decreases. Here are seven tips: 1. A diagnosis is important so... go through the muscle tests, an MRI, blood panels and most importantly the skin test which was, for me, the most revealing and confirming. 2. Find a neurologist who can be your provider partner. 3. Be religious about following prescribed medications and activities so that the feedback will be meaningful and dosage modifications can be made. 4. As your activity level decreases do the same with your food intake. As my provider reminds me....calories in can only equal calories out and portion control is the best way to get over this hurdle. You will find that after a while, saying "no thank you" becomes much easier. I think they call that getting rid of habit energy. Besides, pain and food just don't pair well. 5. Let go and grieve for the things you used to be able to do but now cause too much discomfort or for which you have to pay the price afterward. Then find new activities. Do some of those things you always wished you had time to do. 6. Ask for help when feeling unstable or unable. Use a walking support to avoid falling when one or the other of your legs has decided to take the day off. 7. Stay in touch with family and friends. Don't wear them out with a recitation of your discomforts.....just express gratitude for the fact that they care. That's enough for today. Let me know if you have specific inquiries and I will respond from my perspective and experience.

Hello @beckypetty, Welcome to Connect. Sorry to hear your neuropathy is getting worse. A lot of us struggle daily with some of life's limitations caused by neuropathy. I know it's not much help saying you are not alone but one common goal we all have is searching for something that will provide that little bit of extra relief to give us some quality of life. I'm not sure if you have seen some of the complementary or integrative therapies that have helped others with neuropathy but the Foundation of Peripheral Neuropathy has some suggestions you may find helpful here -- https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

You may also find a few other discussions helpful by reading posts from other member and learning what has helped them.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I think it's great that you lost 50 lbs on your plant based diet which I'm sure was a big help. Have you tried doing any type of exercises to help with your mobility?

Not sure if you have tried any supplements however I use a compounding pharmacy with very knowledgeable pharmacists who have recommended alpha Lipoic acid for neuropathy at 600 mg twice a day. They have many patients taking this with good results.

Hello @beckypetty, Welcome to Connect. Sorry to hear your neuropathy is getting worse. A lot of us struggle daily with some of life's limitations caused by neuropathy. I know it's not much help saying you are not alone but one common goal we all have is searching for something that will provide that little bit of extra relief to give us some quality of life. I'm not sure if you have seen some of the complementary or integrative therapies that have helped others with neuropathy but the Foundation of Peripheral Neuropathy has some suggestions you may find helpful here -- https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

You may also find a few other discussions helpful by reading posts from other member and learning what has helped them.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I think it's great that you lost 50 lbs on your plant based diet which I'm sure was a big help. Have you tried doing any type of exercises to help with your mobility?

Hi-I have entrapment neuropathy.

Glad this formulation is helping you. Please explain the advantage of the compounded alpha lipoic acid versus the alpha lipoic acid available at the drug store.

Hi @expat49, Have you found anything that helps? I know you mentioned earlier that you have had decompressions surgeries. Did that help?

I'm wondering if you might find the following information helpful.
-- Nerve Compression Syndrome: https://www.healthline.com/health/nerve-compression-syndrome
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/comment/247117/