Hello Everyone!

My name is Raechel and I live in Washington state. I was diagnosed with CRPS 2 this week and needless to say my life is in shambles. My children are being denied the ability to live with me because I am on Opiates for my pain. Yes you read that correctly... my children are not allowed to live with me because I am on pain medication. (so says the state of washington)
On and off for the past two weeks I have had these what I can describe as "flare ups"?
I guess I should start off with I started having symptoms last July, 2014 after a 13 mile hike in the mountains with my now husband. My pack on my back only weighed less than 25 lbs i think it was 24lbs to be exact. I DID NOT wear my hip strap and this is where i am told I made my mistake. I came back from that hike and I have never been the same. I was finally diagnosed with a brachial plexus injury to my right shoulder, with a 25% loss of nerve function diagnosed using the painful EMG test. My injury has now turned into CRPS type 2.
The pain goes up and down in severity, is a 10+++ at its worst!!
But the last two weeks, my skin on my hands is peeling? and getting worse everyday.... My pain meds are not touching the pain at this moment, and every second of typing is making it worse, the numbness and pain. My symptoms have now spread to my left shoulder and my right hand turns colors... mostly blue.
Am I the only one that has the skin flaking off and such? I feel as though some of these symptoms do not even apply to a nerve injury! lol. It makes no sense to me!
I AM SO IN NEED OF SUPPORT AND REASSURANCE! THAT MY LIFE WILL IMPROVE! I AM LOSING HOPE AS THE DAYS GO ON... that i will lose my children and my will to live... I feel like this is so unfair and i didnt ask for this disease!!! so not only do I have to learn to live with it, because of the pain it causes I have to learn to live without my children as well and that does not seem fair!

Hi Rachel,

Welcome to Neurotalk!

I am VERY sorry for all you are going through!

It does not seem right that Washington state would take custody of your children simply because you are using opiates for pain control.
I hope you will be able to acquire adequate legal representation in the child custody issue(s).

Rachel, you might get more individualized support if you copy your post above and start a new thread just for your own story. Just a thought.
You have a unique situation.

Glad you are reaching out!

Warmly,
DejaVu

Hello and welcome to the NeuroTalk Support Groups.

Just leaving you the link below to the

Reflex Sympathetic Dystrophy (RSD and CRPS) Forum

Check out the "Sticky" threads at the top of that forum too if you can. There are links to useful websites and other information that would be helpful to you.

Post an intro on the main forum and I'm sure the members there will be able to offer you support and information regarding your new diagnosis.

all the best.

Have you had any expert PT at all?
The BP injury & the backpack factor, sounds very similar to thoracic outlet syndrome. (TOS).
We have a TOS forum with info and also passive & self care things to try..
Sometimes consistent and focused posture work is very helpful.. But if it is nerve pain due to impingement it won't get better with meds and no treatment.
http://neurotalk.psychcentral.com/forum24.html
Check the useful sticky threads above the main section ..

If you can find some pain relief for the BP injury maybe the overall pain level will lower..
Some w/ TOS injury do get RSD/CRPS also... and some of the symptoms can overlap..

And many MDs are not fully up on TOS info, so almost need experts - PT /chiro or TOS doctors for best treatment.

Dear friend
I haven't had the chance to start at the beginning of this
site
When you wrote that your state took your babies
Your children from you makes me so angry and ever so sad
children look for their mommy no matter what

This place has helped educate me on so many levels
Their experience strength and hope

The hope you find a cure
or even the right medications to help
releive the pains

There is a two part for myself
I am on a mechanical level screwed
I am also screwed out of the neurological pain
that consumes my entire body
Espically my right back
Hands and feet
Some funky stuff happening
In medication forum sub:SCS
Unexplained stuff new crap
But very scary and disturbing
When I was on the medication Lyrica
I will never forget what the magic amount was
four tablets don't remember how many mils each tablet
This was for the neurological pain my hands and feet are experiencing
Then the worse thing ever being allergic to the medication
Broke out in blisters in mouth
Hands and feet skin changes that never returned back the way
I know my skin to be
And my telling you this is
In the latter part of your message
I need you to get this
I went and am still in a extreme depressive state
Never like when I was on Lyrica

Bottom line
I am only medicated for mechanical pain Opioids
A high dose
I have had to take custody of my granddaughter
Disclosed all the Meds I am on
Judge allowed me to take her until my daughter
works on her addiction problem

I am so sad for you
I don't know what to say
This I want you to know
I know what it is like to want to die
it's just so painful
And there is zero done for my hands and feet
Yet pictures don't lie
And that's what I had for my doctors
My blood work three scripts filled with an array
of test to figure out what's going on
The process of elimation and ruling out the possible causes
of my hands and feet bruise after unexplained pain in the area
a vein will swell then burst after filling and swelling then turn black and blue

I hate that this has happened to me and this great body
It was so lean and mean put men to shame what I could do
probably my own demise
Your desire not to give up the desire to live is my concern
Please get any help with this part of giving up
It is not an option for myself
And I am just broken up about what happened to you
You have no idea
My body giving up on me
I am not ready for that
I am still in a funk that is always underlying
Fight fighting what
This I would like to know
Fighting what
This monster pain
That opioids barely touch
because this body is allergic to so many medications
There is a study out there by a doctor Kevin Tracey of neurology
and I believe his study is a ticket to somewhere better
It just needs to come here in the USA
TRIALS ARE IN EUROPE
STRICT LAWS HERE IN THE USA NOT ALLOWING
THE SELECT FEW IN HIS STUDY
BUT A UNNAMED PERSON CURED
THIS IS NOT MEDICINE RELATED
BUT BY A DEVICE PLANTED ON THE NERVOUS SYSTEM
AND IS TWEEKING THE NERVES THAT ARE DESTROYED

My pain specialest shot my thunder down
when I brought it up to him
He gives out the Meds is my only answer to his defense
with how he reacted to the new information I just learned about

I keep going of track
Point
Please don't give into that state of giving up
My father commited suidide
I promised my four grow children
They will never find my body in that state
Never to fear
I know that kind of pain
I am still stuck in that funk
when the pain is so great it wakes me
at five in the morning
And cannot go back to sleep
I have to wait till at least seven in the morning
If I would to begin taking my Meds haphazardly
I would be screwed
I take my Meds faithfully
On time the same time everyday
Why you might ask
I am a recovering alcoholic and addict
Over twenty years now
My drug of choice is alcohol
I know what my first three drinks do to me
And respect where I am today
If I were to abuse my Meds
I'm not a pill person
Hate IT
but this is my life
No more life in a bottle
Grew up and took responsibility
Of ME
DON'T YOU GIVE UP OR GIVE IN
WE ARE ALL HERE FOR YOU JUST AS LONG
AS YOU KEEP COMING
LOVE
me
My your days be bright

I have no life. I don't want to be here anymore. I am contemplating having my left arm and right foot amputated.
Today I trued to workout but I feel like my feet are broken and burned and get icy numb. My left arm and hand turn purple and ice cold. I can bend my arm joints much and even tapping on my arm is horrible, horrific pain.

I need to find an expert in or near Philly, Pa.

The only thing that worked is Nucynta but my family was not happy with me taking it so I stopped.

I'm so sorry to read how bad your pain has become.

I'm not sure if you have CRPS or not but please post over on the

RSD/CRPS Forum

as I know there have been past posts/threads about amputation and considering the nature of such surgery, it would be best if you could investigate every single alternative before making a decision... just my thoughts anyway.

<< edited to add: Sorry, I didn't see that you've just posted there earlier. That's a good place to ask >>

Have you tried Low Dose Naltrexone? I have Small Fiber Neuropathy and it has been very helpful for me.

http://www.ldnresearchtrust.org/cont...deep-chopra-md

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3661907/

can't believe how much effort it is to type this.
I cried myself to sleep last night. Nothing is helping today. Feels like my left arm and right foot are being crushed, literally.

I am going to ask about something stronger than nucynta or a pain pump or nerve block.

I tried rite aid and cvs pharmacy. They also checked all their locations in the area and nobody had enough Nucynta. They said they rarely stock it. They also said it is illegal to fill a script partial and give me the rest later when it comes to narcotics. They said by law they can't give me half for example and provide the rest later.

Weird?

They said the doctor will have to give another script for remaining med.

Only time I ever got a partial order filled is when I had a pharma whom I befriended and he let me slide and was the one to allow me partial orders.

Hi,
You have a classic case of spontaneous CRPS spread. I bet you have had other pain issues before this happened? http://www.ncbi.nlm.nih.gov/pubmed/21331457