Living with Neuropathy - Welcome to the group

Hello Beth @bethwiseman. I would like to add my welcome to Connect along with other members. My small fiber PN is also idiopathic but fortunately I only have the numbness. I'm sorry to hear you haven't found much help with the burning in your feet and legs. You are definitely not alone with those symptoms so I'm hoping other members will be able to share their experience with you. You might find the following discussion helpful.

Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

Have you tried any alternative therapy or treatments?

"Walk This Way..." Everyone has different needs and levels of functioning so this applies to those who have decent balance and can go for walks. I find that if I turn around and walk backwards for short periods on my walks that it stretches my foot muscles and tendons differently and in fact just feels good.

I live in Rhode Island with my husband and have had a general diagnosis by a physiatrist, who performed an EMG test, with severe polyneuropathy possibly triggered by an autoimmune response to spinal surgery.
I am calling neurologists connected to Yale New Have and Rhode Island Hospital to get a more definitive diagnosis and possible way forward. New patient intakes are anywhere from July to September. One Intake coordinator was encouraging for an earlier appointment after I and my GP called. My physical and occupational therapists will also call to say they need a diagnosis to create a proper care plan for me. So, I am doing exercises to maintain some mobility with a walker. My upper body strength is still adequate for this although my legs have not gained strength. This is still very new for me, going from relative strength after the surgery to decreasing strength and sensation in my lower legs and feet, but with comet like nerve pain in my shins, arches and ankles.
I’m grateful for support from family, friends, PT,OT, and home health aides since coming home from a physical rehab, but am also looking for support from a reputable site like Mayo Clinic.

Hello @efgh1020, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. I'm glad to hear you have a strong support team of family, friends and home health aides since your spine surgery.

There is another discussion that you might want to view to see if some of the symptoms are similar to yours:
- Anyone been diagnosed with arachnoiditis after spine surgery?: https://connect.mayoclinic.org/discussion/arachnoiditis-2/

@jenniferhunter and other members may have some information or suggestions to share with you. Are you able to share a little more about the specific type of spine surgery you are recovering from?

Is there a cure for neuropathy?

As far as I know there is no cure for neuropathy. There are ways to treat and manage the symptoms of neuropathy. I replied to your other post with a link to The Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/) which has a lot of helpful information. Another site to learn more about the types of neuropathy and treatment options is Neuropathy Commons (https://neuropathycommons.org/). It's good to learn as much as you can about your health conditions so that you can work with your doctors on a possible treatment.

wholly cow, this search function on Connect works! I remember this video, I'm glad it's still available. I have another one of these scheduled. The doctor says that at the time of the video, 1000 of these ? Did I get that right? I have them done to determine progression of myasthenia gravis, my left arm/leg goes numb.

EMG (Electromyography): About your Mayo Clinic Test – YouTube
— https://www.youtube.com/watch?v=dXEqCf_ksJE

My name is Victoria & I was diagnosed approx. 8 moths. Ago with CRPS . After having a lumbar back fusion. I had two nerve blocks by a pain management Dr. 5 wks. After my surgery but had no relief of my pain. At first my legs and feet were mottled , red and purple with pain, burning and swelling. Now at 9 moths. Post surgery I am still dealing with pain & burning. I am on gabapenton & I occasionally have to take Vicodin (lowest dose) I believe that at this point the gabapenton is making it worse. My blood vessels in my feet and legs bulge out & I’m getting areas of vericose veins. I’m just wondering if other people feel gabapenton is making things worse. In the beginning my pain and burning was mostly in my feet and ankles. Now I have pain and swelling in my calves and legs. I’m retaining a lot of water in my legs. I would appreciate any input.

Hello @bellabray, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Sorry to hear you have pain and swelling in your calves and legs along with the pain and CRPS. You might find reading through the following discussion helpful to meet others with CRPS.

CRPS - anyone suffering with complex regional pain syndrome: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

I had swelling and was retaining fluid in both of my legs and was diagnosed with lymphedema and now wear compression socks which help keep the swelling down. They first did an ultrasound of the legs and then I had a lymphoscintigram which is when I was diagnosed with lymphedema. Have you discussed the swelling in your calves and legs with your doctor?

@pondoak @terryzrust @bethwiseman @windsorchris @efgh1020 @artscaping and others, The Foundation for Peripheral Neuropathy is having a Chair QiGong for PN Webinar if anyone is interested in giving it a try.

QiGong combines gentle flowing movement with breathing and meditation techniques that provide low-impact exercise, improved balance, and overall health benefits. Ms. Cynthia Maltenfort, who is a yoga, tai chi and QiGong instructor, will lead us in this ancient form of Chinese exercise. Learn how QiGong, modified for beginners, can help you.

Wednesday, June 16
2:30 - 3:30 p.m. Eastern Time
1:30 - 2:30 p.m. Central Time
12:30 - 1:30 p.m. Mountain Time
11:30 a.m. - 12:30 p.m. Pacific Time

Register for the Webinar: https://register.gotowebinar.com/register/678958740669516812