So sorry for what you are going through but, you have made it to a supportive place.

Many folks here have learned to live with chronic pain but, for many of us, it has been a bumpy road and I know I am not the only one who felt I could not go on.

I have found though, there is always hope. My primary care doc referred me to an excellent pain mgmt doc who helped me regain a life and truly, I was at the end of my rope prior to the referral. Have been seeing him for 11 yrs and every time my pain escalates or changes, he has had a solution.

Maybe if you tell us the meds or therapies you have all ready tried, we could offer some advice.

We are here to talk to....if you feel the need to talk in a more personal or private way, feel free to private message(PM) me anytime.

Indigo...it is 9:15 PM here on the East coast, USA...please know I am praying for a solution for you and healing energy coming your way.
Please keep in touch with us.
My best,
Diandra

Thanks to all of you for your support. Can't write much. Need voice activation but in a very long queue. To respond to some of you- there's no pain specialist in my region and no effective rehab ward. I see my GP once a month. Her preference. I've been to ED 6 times in 2.5 yrs. Admitted twice. Once this year for 12 days. It helped, gave me respite. Other admission 2013, a nightmare. First 2 wks fine then transferred to rehab. There was none. I planned my own rehab and tried to do that. Treated badly, they were aware I had a psych history and stigmatized me. I was highly traumatised by the time i left.

I'm on gabapentin, norflex, nortriptyline and coming off a low dose of methadone for pain. Pregabalin isn't funded and lidocaine patches are illegal. I've had tramadol morphine prednisone. None were helpful. I take magnesium and melatonin. There's no where for me to go and no respite care available for me. Don't fit criteria. ED itself has a long history of treating people who experience mental illness badly. Something staff at mental health services acknowledge.. Sorry can't complete this. Too painful.

Have you delve into whats causeing your neurological symptoms?
i LOOKED up the closest definition, it sounds it could be related to autoimmune diseases, do you have anything that is close?

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.

Hi. I'm not sure how to send you a PM. I'm not quite well enough to figure out how this site works yet. Will spend time to do that once I've improved but would like to chat. Thank you for your warm thoughts. Jenni

Hi Diandra

Got your email but my reply bounced back. Said it needed your approval. And when I tried the various ways to sort it nothing worked. Blocked me. I must be a bit dim! Really struggling with the way this site works. Really want to talk with you. I'm where you were once. Tried to send you my email but the site said I can't do that.

Hope you get this. Sorry all the difficulty.

indigo