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Complex regional pain syndrome

Sep 29, 2017 9:51 AM

Is there anyone with complex regional pain syndrome.
Complex regional pain syndrome is a horrific condition which is caused by an injury or can come on by itself (this is what happened to me). It is when the nerves from the brain to the effected limb are damaged this is resulting to extreme burning pain because the nerves are confused and sending the brain mixed messages. I didn't get diagnosed until this year people told me I was making it up and that it was all in my head and when I was rushed into hospital it caused me to be medically miss treated and medically neglected and it has been hard for me as in January of this year it was only in my right hand and now I can no longer use my right side and now I am starting the lose my left side this is all due to the extreme burning stabbing pain this condition is. I have lost parts of my hair and nobody understands how I feel.
So if there is anyone with this condition please speak out we need to raise awareness!!

Sep 29, 2017 10:01 AM

Maybe someone does and they have no beeen diagnosed. It might be helpful if you explain what it is. A lot of people here cannot figure out why they are in pain.

Sep 29, 2017 8:32 PM

That is one of my diagnosis but who knows. It is my understanding that CRPS is really just a group of symptoms that cause pain usually after some previous injury.

Sep 30, 2017 8:34 AM

Crps occurs when the nervous System and the immune system malfunction as they respond to tissue damage from trauma or from nothing. The nerves misfire, sending constant pain signals to the brain. It is also known as the suicide disease and there's no cure so people this this condition and me are stuck with it, it's a great thing for a 15 year old to have (me)

Sep 30, 2017 11:31 AM

Thay soinds vrry similar to fibromyalgia, although not as many symptoms. Definately not fun to have. I understand from a fibromyalgia stand point. I have had fibro since i was 15, but have been suffering since i was a kid. Theu told me it was growing pains. I know how it feels to be young and in pain.

Sep 30, 2017 7:46 PM

I'm sorry to hear that, it's horrible being young and basically house bound due to pain. I got told for years I was having growing pains and because i used to do ballet and spent a few days a week training everyone placed it on that. But doctors recon I've had crps since a child but only in my teens it has flared up and ruined my life.

Oct 02, 2017 3:15 PM

I have it to! I'm 14 (almost 15) I've had it for 4 almost 5 years now😑

Oct 10, 2017 11:17 PM

It's so cruel crps it's taken over my life and so many others

Oct 15, 2017 11:45 PM

For you two young things my heart bleeds for you. If your parents will allow make you a face book page that your friends do not go to and look into support groups. I have joined several that have helped me. These pages will help your parents help you. The pages I belong to have members that are exceptional at research. They also will talk bluntly about meds and homehelp. That is where with my burning rear have found the Wahls Protocol and tricks to make it through most days

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