Autonomic neuropathy

[Guest001]

I have been told that I have autonomic neuropathy and that there is no cure. My gp has been great but at a loss of what to.i have searched for a specialist but sick of getting told we can help only to end up in the same spot but poorer.

I don't think that I can keep going with all the pain I'm in constantly. My partner is very supportive but she can't do anything to reduce pain 

I'm at a loss for where to turn or who to talk to that may be able to help

[Croix]

Dear Guest001~

Welcome to the Forum. I'm very sorry you have been diagnosed with autonomic nephropathy and live in constant pain as a result.

Unfortunatly I beleive this condition can be caused by a number things, and as you say they may not be subject to treatment -unless it is something like diabetes.

So I guess what is left is to treat the pain, which is something I have to do as well. In the  short term it may seem effective ot take pain-killing medication, however it may lose its effectiveness or become addictive. Really only a visit to a specialist pain clinic (up to a week's stay) can sort this out.

I am able not to take too much medication, so it remains effective and try both lifestyle and  mindfulness to try to reduce the pain level and distract myself. For mindfulness I use -now that I have practiced -the free phone app Smiling Mind.

Having an understanding and supportive partner is a real blessing -even if they cannot relieve the pain.

I hpe you feel like coming back again

Croix

[Oldbar fisho]

Thanks for your response.im not sure what happened to my last reply.

If I'm not allowed to say what I'm feeling without offending anyone it's really pointless coming here.

I do appreciate your assistance but feel that this site is not for me 

Thanks

[Croix]

Dear Oldbar fisho~

I did read your post from 2021

https://forums.beyondblue.org.au/t5/suicidal-thoughts-and-self-harm/dont-know-what-to-do/m-p/31534#M...

and know things have been unbearably difficult for you. I hope in the intervening years things have settled down a little. Having a loving family has helped me more than I have always realized and I hope your two daughters remain the  same.

I know Sophie_M did suggest talking with our 24/7 councilors, maybe they have some fresh ideas.

You may not believe the Forum is for you however to live in such a state of pain does by itself give others courage to face the most horrible circumstances, and for that alone this Forum and you have common ground.

I'm lucky I can balance pain wiht the taking of meds and manage, even it it is not ideal, so maybe I'm being a bit presumptuous to compare my experience with yours.

I can only hope you condition abates and you get some relief

Croix

[Oldbar fisho]

Thank you Croix but I do not understand why my posts were not able to be put up if it is so helpful. I het the feeling of being dismissed by someone as not important as not even a reason why they are not there.

My daughters are very aware of my situation but they have their own lives to live and although we talk we do not see each other often as distance for me and work for them rarely are the same.

I will just deal with this issue the best way I know how and that is by myself.

It's better to not hope than to hope and get nothing .

As I asked I'd like all my details removed as I won't be back .this in no way reflects on you but whoever made the decision that my posts shouldn't be put on the forum.

Please do not waste your time responding to this as I won't return to the forum .I will check next week to ensure my details are removed

David

[Eagle Ray]

Hi David,

You may not read this or it may disappear as you’ve asked the posts/thread be removed, but I will try responding anyway in case it helps and you see it.

 I understand what it feels like struggling with health conditions for which there seems little help so I have huge empathy for your situation. I’m 48 now and have had lifelong chronic pain and part of that has been significant autonomic dysfunction. I don’t have autonomic neuropathy but I do have multiple symptoms linked to autonomic dysregulation (which has played a role in hormonal dysregulation as well) including fibromyalgia, mitral valve prolapse, interstitial cystitis, chronic migraine etc. Even before things got really bad aged 13 I had debilitating limb pain from when I was a very small child which I believe may have been linked with my traumatic birth. Many times I have no longer wanted to be here, so I know that feeling of struggling in isolation with conditions that the medical profession seem to have limited help for. In 2020 I was diagnosed with a rare autoimmune liver condition as well that progressively destroys the small bile ducts in the liver. Both chronic stress and the use of pain medications to get by may have contributed to this. No GP has even known what the condition is and I’ve realised through my own research I know more about some aspects of it than even my liver specialist. So I do empathise with that feeling that there’s limited help and it is an isolating struggle.

 I guess what I have tried to do is hold onto the things that are meaningful for me. That has been a love of nature, my interest in photography which I’m still able to do at least some of the time and retain a sense of humour which I know at times is not easy but if I can watch or listen to something funny, or engage with others in a light-hearted way, it does just keep my spirit a bit alive and still going. I have no partner or family support in daily life, though I have occasional supportive conversations with a few extended family members, especially a cousin, and a few friends. These things do make a difference, even if much of the time I’m very much alone.

 I’m sorry to talk about myself so much, but just trying to convey that as hopeless as it can feel sometimes, things can shift and improve, and those improvements and lifting of the spirit do feed back into your physical health. 

I just did a google search and found some online support groups for dysautonomia and peripheral neuropathy, which may be a little different but similar to what you’re experiencing. There may be ways to connect with others going through similar experiences to you. I’ve also learned that persevering with my own research has often led to some answers I just wasn’t getting from doctors. I’ve gradually learned to ask for what I need based on research I’ve done, and where I’ve found a supportive practitioner who’s been willing to try suggestions I’ve put forward, it has led to some breakthrough improvements.

 I know the isolation is horrible and living with significant chronic pain is about as challenging as it gets. But there is often an inner strength and I’ve found it helps to find people with real empathy who connect from the heart and get something of your struggle. While they may be rare they do exist.

I’ve had posts I’ve made moderated at times so I understand that can feel upsetting, especially when you feel so vulnerable. But see if you can try not to take it personally. Doing my best here to help you not give up and know that you are heard. I’ve thought that all is lost at times and then some reprieve has happened or a new insight from research I’ve done has helped me. So I am here and listening if you want to talk.

Take good care,

Eagle Ray