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.

Hi Jenni,
I tried to PM you but the system wouldn't let me.
As a new member, I think you need a certain number of posts before you can do PM's so I emailed you instead. I hope you find the email I sent.

Please know I am thinking of you. Your situation is so frustrating, I just want to scream for you.

Would you mind sharing your "story"?
I know you said you can't work.
I can't either, lost my job yrs ago and I loved my job...had a great job at a major computer company in Info Technology....was in mgmt and had 25 terrific people working in my dept.

What did you do?
Do you live alone or with someone?
Do you have support of family or friends who can lend a hand?

I live with only my husband right now but he is at work all day, long days...out of house 12-13 hrs a day. He can food shop and run errands after work. We don't have kids or family that live near but. I do have some friends who help out.

Thinking of you.
D.

Hi Jenni,
I had also tried to send you a PM here on this site. Please check your PM settings when you have a chance, if you would like to send/receive PMs (Private Messages).

I hope you are doing okay.



DejaVu

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

Indigo,

Firstly, I am sorry you find yourself in such pain. I wish you nothing but the best.

While I am unsure how many posts you need to PM, . If you click on Diandra's name and try to PM her now, see if it works.

If not, let's chat briefly in this thread until you get to . Perhaps that is the magic number. If I recall correctly typing can become an issue, so we can keep it brief.

My best,

Jon

Just a quick reminder that the reason we have these initial limitations, is to deter spammers....so posting the numbers may clue any reading here in Hope that explains the edit.

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 Jenni,
Sorry for the delay. Have not felt well lately and have not been very active on these forums.
I did get the msg you sent with your email address and responded back via email.
Your are not dim, this software can be frustrating for a new person.
You have my email now so we can write that way.

I want to help. I feel your pain and know the frustration of feeling like you have nowhere else to turn.

Bluesfan will be a wonderful resource since you are in the same country.
Hold onto hope as Bluesfan can direct you and how great it will be to get connected to a doc or clinic that specializes in pain control.

Some meds I have taken over the yrs that help with pain and even neuropathy despite not being neuropathy meds are Soma(generic name carisoprodol )which is a muscle relaxer. When pain is high, we tense our bodies and when held in that clenched way, it exacerbates any kind of pain. Initially it was tremendously helpful and I still use it when pain is bad. Also, my pain doc lets me use Lorazepam, a tranquilizer, which for me seems to have a synergistic effect with my pain meds. I think when anxiety rises, as pain doses, it helps to relax you a bit and soften the pain.

I have also done ESI's .....epidural steroid injection into vertebrae C5/6 area that helped with pain in neck area. My worst neuropathy is in my right face, jaw,actually the entire right half of my head, down my neck, shoulder scapula with numbness down right arm to 3 fingers. Have had this for decades...damage from an infection.

That just a quick smattering of things I have tried....it is almost midnight and my brains not too sharp.
Will give some more ideas in email.

Hope you get my email. Hang on, we'll all help you. It's going to get better.

My best, D.