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

never
 

I have never had pain issues prior to the ulnar nerve surgery.
I have had plenty of other surgeries for injuries and sinuses, but never a lasting pain issue.
My pain management doctor doesn't think it is CRPS cause it is not progressing, I don't have swelling and some other symptoms so he continues to say it is pain from MGUS.
I know like it was yesterday that my symptoms started within a week of my elbow surgery including the foot pain and discoloration.

I was treated for Lyme disease and confections to rule that out.

Hi guitar guy,

I am sorry for all you have been through.

I had a subcutaneous ulnar nerve transposition. I think that's the surgery you also had?

Weird things had started to happen after the surgery.
Pain was spreading everywhere. BOTH hands and arms and my right foot were a mottled purple color and were swelling. I did have prior pain issues, yet this made it all worse. 3 doctors gave opinions and were concerned I was getting CRPS/RSD.

They had instructed me to desensitize my limbs, using sand paper or other similar tools, along with massage. I worked on my hands and feet with various textured clothes, with various levels of pan scrubbers, with a very soft brush, etc. In time, the mottling and swelling had reversed. Lucky me.

Even so, things have never been the same, The severe swelling started in my feet and the pain has been just excruciating. Another M.D. then told me I have RSD in my feet. I really don't know.

I have other conditions which can inflame feet and all limbs, so it gets confusing in my case.

I'd wanted to let you know the surgery I had for ulnar nerve entrapment had also started some kind of spreading pain and swelling, mottling, etc.

I hope you can find answers and relief!

To Our Healing!
DejaVu

New to here and having CRPS2
 

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!

Rachel, Welcome!
 

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. :hug:

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.

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/