despair
 

Hi. I'm a new member. I have Central sensitisation disorder and Functional neurological disorder. My biggest issue is debilitating nerve pain over most of my body. Meds haven't helped much and although I was highly motivated for the first two years I am now highly suicidal.. I went to the hospital Emergency Dept and they kept me overnight and then sent me home. This has occured 3 times before. I'm in agony. I can barely wear clothes, walk, feed myself, etc. I'll have to finish because my hands are too painful. All health professionals who are trying to help wanted me in hospital. And eventually I gave in because things were so severe. There's no where else to go. I live in New Zealand so our system may be different from others. Can someone please help me?

Pain Management
 

I don't know how it is in New Zealand but here in the USA, your primary care Dr. is the one that refers you to pain management. Pain will certainly drive you to depression and your primary should be able to recognize the signs of depression. Some folks get too freaked out in front of the primary and get shuffled off as anxious or unstable so be careful to not go on a rant. You said that Meds haven't helped much. I didn't get any relief until I got Hydrocodone 10-325 but you have to be in PM to recieve that med here in USA. Good Luck, Ken in Texas.

Don't wear clothes if you don't have to. Many days I barely get dressed, there is no need. I have a few things I wear that are loose fitting and very comfortable and light. Heavy clothing bothers me too.

Please Stay Safe, Ask For More Help
 

Hi Indigo,

Welcome to NeuroTalk! :D

Please make yourself at home on any of the many forums here. :)

Your condition sounds very painful and very frustrating. :(
The obstacles to finding adequate assistance and relief within health care systems can become very demoralizing, anger-provoking and saddening, all at the same time. After asking for help, repeatedly, we can get to where we feel hopeless.

I am not sure of how the system operates in New Zealand. If the health care professionals working with you prefer you are admitted to the hospital, I'd hope you'd be admitted to the hospital.

However, I run into the same issue here in the U.S. At times when my primary care doctor has wanted me admitted to the hospital (and he has admitting privileges), the hospital policies have over-ruled his own judgment.

My primary care doctor is allowed to prescribe pain meds, do pain management with me, without referral to the PM clinic. (I think maybe different states have some different regulations and some health care systems have their own policies; thus, PM is not handled in the same way across the U.S.)

Many times, those of us with very painful and chronic medical conditions, also need evaluation and treatment for depression and/or anxiety, as well. It's natural to feel depression and despair when in so much pain and without adequate relief.

Are you being treated for depression, as well as for pain?

A few options until you can see your doctor:

If you are feeling suicidal, please consider going again to your local E.R. I'd hope your need to get medical attention there again will help you to get the ongoing care at a level most helpful to you.

Please call upon friends and family and honestly tell them about your feelings.
If you live alone, ask someone to visit or to stay with you, or if possible, stay with them at their place.

Please call/contact a suicide or crisis hotline.

Indigo, please continue to reach out. :hug:

I've had some periods of ongoing excruciating pain, have been to the E.R. for assistance and have had to keep going back to the E.R. It was always very frustrating. I had two options: ask for more help (again) or give up. I am glad I had asked for more help.

Many health care systems are failing those of us with chronic pain and chronic illnesses. The shortcomings are on the part of the systems, not upon the health care workers trying to help us, and not upon us.

Please ask for more help with your pain and your depression. :hug:

Please take excellent care of yourself during this very trying time.
Stay safe.

:hug:
DejaVu

Hi Indigo,

I know what you are going through, I have suffered with Neurological Hypersensitivity, triggered by my many other painful conditions, for 25 years. Clothes burn, even a light sheet is too heavy in the English winter.

I cope with Lidocaine Infusions, oral Ketamine and (usually) Meditation to strengthen the mind. Increased pain from neck injuries has curtailed practice at the moment.

You need to be seeing a good Pain Management Specialist with a pain aware Psychologist to receive the treatment you need. The ER, while a stop-gap, is no substitute for quality, ongoing help. Your GP should be referring you to all this.

In the interim, if you would like to talk about anything, I am always available.

Dave.

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
 

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 Diandra
 

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. 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 :hug:

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.
:hug:

Tried to PM you....
 

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.

:hug:

DejaVu

indigo trying to reply
 

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 :winky: Hope that explains the edit.

desperate 2
 

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.