Hi. I've been extensively tested for everything imaginable. MRI, lumbar puncture, endless blood tests, xrays and so on. They've diagnosed via symptoms and I think they're right now. Neither illness has any cure. I think it is autoimmune and neurological. Thanks for your thoughts.

Well, I'll be the one to say I support you in ANY decisions you make around your horrendous situation. Despair is the natural and "correct" emotional response to such a situation. And I mean I support you and honor you in ANY decisions you make for yourself. I have given myself that gift also and it's brought some peace amid the fear, pain, and anguish of a disease that likely won't kill you but make you wish it would many many times. At least that's true for me.

And of course as you are among the living I wish for you relief of your suffering now. I wish there was something to offer you but IMO you seem to have done due diligence. Hell I have nothing to offer myself, outside of the tremendous psychological growth I'm experiencing right now. I can only liken it to my first LSD experience from 40+ years ago that "saved" me from the hell of an abusive childhood.

Much love to you brother from one who suffers to another. For what that's worth

Dearest Indigo,

There are already many wise words here. I am hard pressed to add anything. I second the suggestions for continuing to reach out, find a PM (even if you have to travel) and to seek a therapist familiar with chronic pain.

I know how hard it is when the pain is so great that you question whether you can make it through the next five minutes. It is exhausting. But I also know that it is possible to learn to live with that kind of challenge and to find beauty in your days in spite of the pain. A good therapist help me get there. I am deeply indebted to her for helping me learn to cope.

I, like Dave, am getting relief with ketamine infusions. They are good at addressing centralization. Please keep searching for specialists who can help you. it is worth the effort. Half my care team is 3 hours drive from me and I don't even think twice about going to see them.

I will be keeping you in my prayers and sending healing love to surround your battered body and spirit.

I have all over body stinging to the point of screaming, I am suicidal too.
my heart pounds, I have no control over any of it. anxiety to the point of terror.. mine is very electrical which makes no sense.. Do you feel electrical raindrops on your skin, that makes no sense.
is yours burning of intense stinging to the point of hysteria..
I have not had clothes on in 4 years.. I scream everyday.
It happened after I took 60 pills of levaquin, I felt electricity blow through my entire body then stinging killer bees took over me. I have passed out many times. there is no relief.
please write I am desperate too.
I now have morgellans which I never even knew existed.
please reply

Hi indigo
Sorry for missing your earlier posts - been dealing with a few issues myself recently and not had my usual focus on NT threads.

Firstly I'm in NZ so understand totally your problems with the health system (or lack of). Won't ask what area you're in (it's a small country and your privacy is important) but I may have some info about resources that might help you access support. I've dealt with the system for a while now and have figured out a few places to get help.

Although NZ doesn't have specialized PM clinics as in the US there are a few attached to some hospitals. It seems from your posts that you've pretty much been through the system without much progress. Sometimes the public health system needs a push in the right direction from the patient or an advocate.

Sorry I can't offer any medical solutions to help with the pain but my support is here if you want it. PM me when you're able to send private messages and I'm happy to share what info you might need.

All the best from fellow kiwi.