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.