No place to be?

Hi
Nope not the same as you but definitely living with CRPS pain, autoimmune stuff and judt a lot. That is like you. Of course I dont know your exposure but I'm 70. Came out in the mid 1980s when AIDS was "the gsy plague." At the time, just being LGBT made people, even ?y family afraid. Course at that time it was a death sentence. I'm so glad you hsve been able to be treated even tho treatment has had its own repercussions. I helped make a few squares on the quilt. Even one was too many. One was for a nurse with an on the job ER exposure.
I feel for what you've been thru even psychological. Do you have a therapist or a group you can attend for support. My psychologist specializes in chronic pain and immune diseases. They are out there and might be a good source to help as being in constant pain and run arounds and sometimes gaslighting and getting lost in the poorly functioning medical establishment can be so frustrating on too of it all. Having a good pcp of course is so important. Fo you want to share more abpit how we can be supportive? It might help specifically to post in each section that directly relates to one thing for ideas. Like for long vovid who would have thought that a rheumatologist was the dr of choice. And we can help each other in so many ways.
I'm glad you posted. I've not been here in a while but its definitely a good place to come when feeling overwhelmed or at wits end. We can definitely relate.

I just saw (remembered) you said thete was no place for you. If you find a thread that can relate and start a thread there like you did here, you never know who can relate to individual issues. Like there has to be people here who have long term AIDS and medicine side effects the same as you?

@jclarke
You are not alone and people do care. This site is very supportive.

Are you working with a neurologist and are you being treated for your neuropathy? Are you modifying diet and supplements to bring down b6 toxicity and are you having regular bloodwork to monitor abnormalities/toxicities/deficiencies? Do you take any supplements for neuropathy (like magnesium, alpha Lipoic acid, acetylene carnitine)?

@jclarke Welcome to Mayo Clinic Connect!

We all are comprised of many different possible physical, emotional, or mental health concerns. It seems the combinations are endless! One of the things that make Mayo Connect a unique place is we can participate in more than one group at any given time. Please take your time, take a look around and find those conversations that appeal to you!
Ginger