Who else has Autonomic Neuropathy?

Hello @lubelle, Welcome to Connect. I know it's difficult trying to help your son with his small fiber neuropathy condition. You mentioned in another post that he is physically fit and health conscious which is a good thing. Thank you for advocating and helping your son find something that helps his neuropathy symptoms. There are many types of treatments available including complementary and alternative that may or may not help which is why it is so difficult to deal with this condition. The best thing you can do is learn as much as you can about the condition and treatments that are available.

Here are two sites that I have found helpful in learning about neuropathy and treatments:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You might also find the following discussion helpful where members including myself have posted about our journey with neuropathy and what has helped - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Does your son have any pain associated with his neuropathy symptoms?

Yes, mainly his feet. He uses ice baths daily, especially after working out in gym or walking (can't run much anymore due to balance issues).
Thank you for the information you sent and I will definitely check this out.
He so does not trust the medical community any longer with what they put him through - so many bad diagnosis that seemed to just send him further down the wrong path - leading to depression and more anxiety.
I see Northwestern University is having success with VM202, but haven't had the chance yet to really understand what that is.
The hopeful news was that his neurologist did say she has seen this completely just go away for some people. Not likely, but hope for some!
Again thank you and I"ll be watching this much closer.

I was recently diagnosed with small fiber polyneuropathy and autonomic neuropathy after 12 years of symptoms. I expereince pain all over my body, burning, tingling. crawling sensation, temperature dysfunction, digestive issues, bladder issues, heart issues, high blood pressure . I have difficulty with balance some days and expereince extreme fatigue at times. I am learning my limits and try to keep going. I was told to keep moving because as soon as I stopped, I would stop permanently and be in a wheelchair. I walk 30 minutes a day and do aqua therapy two times a week. I take pregabalin and duloxitine for the neuropathy. Everything symptom is treated as needed and there is no cure only control.

Here’s a good review of duloxitine. It may provide some answers and advice.
https://en.wikipedia.org/wiki/Duloxetine, the generic of Cymbalta.

I don't have a POTS problem, but I remember from past skimming of this site, that many people who do are seeking help with diagnosis.

I just encountered this article in the New York Times, and thought sharing it here might help others.
https://www.nytimes.com/2021/11/09/well/live/chronic-pain-treatment.html

It’s apparent to me that if you have autonomic neuropathy, you shouldn’t be surprised if you end up with tri myalga as one of the Simpsons, you will develop many more complicated systems as the condition progresses any opinions, and thoughts anybody suffering through it

many, many complications. i have had it since 2015 and with God's help I have managed to manage each one as it came up and add to my daily schedule. With thought and studying the problem you can find ways to cope with it. (i.e.) loss of automatic control of internal body temperature, Hot showers to warm, cold showers to cool. A vest with ice packs when outside temperature exceeds 90 degrees. Each situation requires thought but over the years, solutions were found to lessen the problem. Your attitude is everything. take the problems as they come, find some joy daily. Take one day at a time. You are not in control. Sharon

Hi @andyjustin, to help you connect with other members who have autonomic neuropathy, I moved your post to this existing discussion:
- Who else has Autonomic Neuropathy?: https://connect.mayoclinic.org/discussion/autonomic-neuroapthy/

Do you also have trigeminal neuralgia?

It seems that one of the symptoms of my autonomic neuropathy is a try myalgia I am a year and a half into my original diagnosis. AN has attacked every part of my body. It’s kinda like having a voodoo Inside of me, which pics infuses how it’s gonna screw with me every day symptoms come and go but seem to be progressing you and a half ago. My life is totally normal. An Has Robed me Of what I had hoped would be a carefree life in my mid 60s before an It doesn’t really matter. This is my life now And I have no idea what the future will bring other than pain and disappointment, but the fight is still a fight

Hi, apparently I was post to the wrong group anyway I have autonomic neuropathy diagnosed a year and a half ago. I just turned 67. I am dealing with multiple symptoms constantly and Rob me of life. I hope to have lived moving forward. I do take it a day and time of my symptoms myalgia try myalgia time to move around kind of like having a voodoo doll inside. You pick me away different parts on different days. I take between 1200 and 1800 mg of gabapentin every day when I get severe attack myalgia I take quite a bit more my symptoms seem to come and go coming more often than going. I read another post right it’s gotten to the point where I don’t even bother calling my doctor certain symptoms appear. I am concerned that eventually as my symptoms progress and my quality of life diminishes, my ability to Function will dictate further life choices Let’s be realistic science doesn’t have the answer. I do read and pay attention to research going on, but like everybody with I take it a day at a time.