Living with Neuropathy - Welcome to the group

Good evening @steve123. May I add my genuine welcome to Connect. As @johnbishoop may have mentioned, our group of mentors has no official medical training or certification. We can neither diagnose nor prescribe. What we can do is assist you with your search by introducing you to other folks who have been there.

John has given you some links to current members' journeys. As soon as I get just a little more information about where you have been and what has worked for you. Do you have tingling and then needling sensations in your arms and fingers? How about your legs and feet? When did the neuropathy begin?

How do you feel when you wake up in the morning? What is a typical day for you......medications, exercise, activities? What would you like to be doing that you can't do because of neuropathy? Thanks.......

May you be free of suffering and the causes of suffering.
Chris

Hello @momwith2dogs, Welcome to Mayo Clinic Connect. I think your question - How do you not take any medications was meant for @avmcbellar. Sometimes it's easy to miss someone's reply to your post if you don't specifically tag them with their @membername. I can't speak for Toni but each of us are different and learn to cope with pain the best we can. Sometimes the medications have undesirable side effects which are worse than the pain. I think when that happens people look for alternative treatments to help relieve their symptoms.

It's good that your medications help you sleep. Are you able to share a little more about your diagnosis or symptoms?

Hi @momwith2dogs I only take medications if I have NO other options and they are a must eg antibiotics. Short term is fine. I am leery of long term medications that do not help with a cure but only provide a comfort. I refuse to take a medication indefinitely because it may possibly cause other health issues. Who needs that? I have managed so far with my health not to need long term medications. Thanks for asking. Toni

@steve123 On behalf of the members, mentors, and moderators I'd like to say Welcome to Mayo Clinic Connect, a place to give and get support.

May I ask how long ago you had a stroke and what kind of coping mechanisms, skills, and treatments you have explored so far?

Thanks for the opportunity. I have itching on most of my back that is maddening. I get some relief with a Shingle formula even though I don't think I have Shingles.My husband thinks I have sympathetic dystrophy which he says has little Rx success. Don't know what to do next. MDs sort of shrug.
Thanks for any suggestions.
Joyce M G

@irajoyce. Have you seen a dermatologist? Isn't it frustrating to have your doctor shrug when you have a question? I just left a doctor who did that to me. He thinks that because I'm taking less medications than he, I shouldn't complain. His attitude is, what do you expect, you have this and this. I think he is just buying his time till retirement. I'm going to a new doctor, hope he is more proactive. Itching is maddening, I hope you get better soon. How about good old calamine lotion? I once had a very itchy spot on my leg where I put a topical pain relief patch for too long, calamine lotion worked for me.

Hi @irajoyce

What is your medical history?

irajoyce a thiamine deficiency may be a possible cause of your itching. Thiamine like vitamin D requires magnesium to make it bioavailable. Fat soluble forms last longer and are able to pass through the blood/brain barrier easier than water soluble forms. . Have you been checked for celiac? Eliminating foods containing gluten resulting in a decrease ot elimination of itching could point the way for treatment.

https://mcvitaminshealthproducts.com/complex-regional-pain-syndrome-crps-reflex-sympathetic-dystrophy-rsd
https://nootropicsexpert.com/vitamin-b1-thiamine/

@lioness I had been making "Golden Milk" a while ago and I am not sure if it did help with anything but it was a nice evening beverage. If I want to try it again I will need to check with my transplant team to see if turmeric is OK for me.

@mayofeb2020 I have always found cortisone shots to be very helpful if done by the right doctor. It was pretty random with doctors up here (southern NH) so I checked out some doctors in Boston and landed on one who hit the spot every time. Often they don't get it to the exact right spot and then it's no help. I was heavier when I found the doctor in Boston and the first thing he asked me was if the doctors had used a longer needle! I didn't think so, and he said that with patients "with extra padding" a longer needle was needed to get to the spot and he sure was right. I went to him numerous times and he always got it right, even after I lost weight and had less extra padding. Also, you could try going to a physiatrist. They do guided cortisone shots to ensure they do hit it right.
I would like to have a shot but at this point, I have fairly advanced osteoporosis which is primarily from having to take prednisone. I fear that cortisone, also being a steroid, could worsen the bones in my hip. I need to talk to my endocrinologist about that. I have a zoom appointment coming up this week.
I also had PT for my bursitis but did not find that to help much.

@faithwalker007 I am entering into this discussion quite late but I just want to express to you how much your message struck me. We take our health for granted so much and then hear about someone suffering every day. Entering this late, I am not aware of what problems you and your husband have but my hope for you is that you are able to somehow get some relief. I presume you have been to great doctors for help. Never give up. Hugs.
JK

I wish I could say we have been to great doctors for help. Unfortunately, Wyoming has very few of those. My husband still has no true diagnosis other than traumatic arthritis. I believe he has EDS and/or RA. His doctor (now retired) refused to pursue or refer any avenue.
My pain specialist is rather ignorant on how to treat or manage CRPS type 2, especially with my complicating diagnoses. I’m the guiding light on care and I pray every day that my faculties are with me to not screw something up. Pain has a way of blurring lines and I’m not exactly the expert. That’s why I’m going to them in the FIRST PLACE.
I appreciate your words and heartfelt thoughts. Our lives are made complete by much more than what our bodies dish out. That’s why keeps us alive and joyful. And that is what we call success.