Living with Neuropathy - Welcome to the group

Hi, my name is Shannon and I have autoimmune mediated polyneuropathy caused by Ts-Hds and Am trying to connect with others who have this form of it. In addition those who have found relief through modifications of lifestyle or just a great support group locally. I live in Michigan and this chronic pain from doing the minimal is so disturbing and defeating and Im currently on IVIG. Please help or guve resources if you can. Im grateful that I dont look sick but more and more I feel terrible with burning and pain which makes me more tired amd cause isolation.
Thanks in advance

Let’s talk about post shingle nerve damage. I have been dealing with that on right side of face and deep within my ear. A few years ago I was dealing with burning mouth and spent thousands on dental procedures trying to get the burning mouth to stop. Finally I stopped taking hydrocone-act and pregabalin and the mouth burning was gone! I was off medication for 16 months. Life was wonderful! No burning mouth pain. Then my ear started hurting and I went to clinic. Hesitantly was treated with Amoxicillin with the additive. My records showed an allergic reaction to this additive. I took the medicine and broke out in a rash on both sides of face and the deep ear pain. Emergency room PA told me I had shingles so was given the viral medication for shingles. The shingle scabs on the right side of my face and inside the opening to my ear were bad. Minor scabs on left side. That was first of December 2025. First part of January I still had the scabs. Sometime in Jan 2026 I was diagnosed with post shingle nerve pain on right side of face and right ear. I was put on hydrocone and pregabalin for the pain. Fast forward to Aug 2026. I have had 3 nerve blocks and scheduled for a 3rd nerve block this week. I was taken off the hydrocone-act about 3 months ago because it seemed to make my post shingle nerve pain worse. Last week I made the decision to stop the pregabalin after reading once again how pregabalin could also make pain worse. Remembering back that was the burning mouth experience I had with both medications several years ago with my burning mouth. I have not had any pregabalin now for a week and the post shingle nerve pain is a lot better. I was thinking about canceling my nerve block but decided to proceed with the nerve block in hopes it will help my nerves heal even more. First part of May I had surgery on my right ulnar nerve at elbow because my little finger was burning, my ring finger was numb and palm of hand was numb. I finally wrote letter to my neurologist about testing to get him to take me seriously. My ulnar nerve was seriously compressed. I had been resting my painful forehead on my hand as my elbow rested on the arm of a recliner chair in dealing with the pain of post shingle nerve damage on face and in right ear. I have been in physical therapy in excess of 2 months. My little finger still burns, ring finger and palm of hand still numb. Dr says healing the nerve will take a year or more. It’s taken me two experiences now in taking pregabalin and hydrocone to know without a doubt my system handles those two medications the wrong way by making pain worse. I fought taking the pregabalin the second time but it seemed to be what I was offered! Asking for payers during my nerve block this week for it to go ahead and heal my post shingle nerve damage on face and deep within my ear. I am pretty well convinced that as bad as my shingles looked on right side of face and on ear opening, steroid injections at the sight of those scabs might have helped in preventing the post shingle nerve damage pain. No I had not take the shingles vaccine and I regret that decision. My husband took his first the night I was in emergency room and he followed up with his second shingles vaccine as well!

What is actual Neuropathy

Hi, my name is Shannon and I have autoimmune mediated polyneuropathy caused by Ts-Hds and Am trying to connect with others who have this form of it. In addition those who have found relief through modifications of lifestyle or just a great support group locally. I live in Michigan and this chronic pain from doing the minimal is so disturbing and defeating and Im currently on IVIG. Please help or guve resources if you can. Im grateful that I dont look sick but more and more I feel terrible with burning and pain which makes me more tired amd cause isolation.
Thanks in advance