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The Central Pain Syndrome Foundation gained 501c3 status in 2015, making your donations tax deductible.

Help us work toward our mission:

To increase understanding of Central Pain Syndrome, its symptoms, causes, and treatments;

To help ensure quality medical care for those suffering from CPS;
To energize science to find a better treatments, and eventually a cure for the disease;

To improve the lives of patients, their caregivers and families;
To create a network of people dedicated to achieving these goals.

CPSsufferer

Fiona Morrison-Bradbury

Fiona BradburyMy stroke was a thalamic stroke I experienced in my sleep with no previous heath issues and I was not a smoker nor obese. I was 45 years of age and had an 11 year old (who called 911) and a 14 year old. They never discovered the cause of this stroke.

The pain syndrome was diagnosed within 6 months. I thought it was another stroke.

This is a nasty syndrome that makes life difficult to live and to make plans as it changes every day, sometimes every hour. We need to find a cure or at least a reasonable pain management strategy that doesn’t remove us from our lives and families. And, we need people to understand that just because you can’t see a disability, it doesn’t mean it’s not real.

CPSsufferer

Julie Haupt

Julie Haupt

My name is Julie, I’m 33, and I’ve had Central Pain for 6 years. I have severe burning and cold, unrelenting pain throughout both sides of my body. The worst part is my hands. It feels like i’m on fire and also freezing cold.

I had a stroke at 26, a blood clot in my cerebellum, right in the middle of the back of my head, by my spine. Four months later the tingling in my hands started, I also had tightness in my arms. The pain changed to a burning, spread everywhere and worsened. The only place i don’t feel it very much is my lower back and buttocks.

The only thing that has helped me so far is opiates, I’ve tried every non-narcotic. I can’t be on them forever so i’m hoping to get a spinal cord stimulator or something else. Everyday is a struggle not to go crazy, I try to stay distracted with tv and search for help and solutions.

Thank you for this group. It’s nice to hear other peoples experiences and what they’ve tried. It’s nice not to be alone, although I’d never wish this on any person or animal. No one should live like this and I hope there’s a breakthrough soon. Thank you for giving me a voice and help.

CPSsufferer

Nathan Noble

Nathan Noble

Central Pain began at birth.

Cause: Mastocytosis/ Mast Cell Dysfunction ( I have an even more rare variant of this Rare Disease- The Few Immunologist that study and Dx it can’t agree on a name). Also, too many Orthopedic injuries to list and A-Typical Trigeminal Neuralgia that began with a Dislocated & Broken jaw in 89′ and subsequent Oral Surgeries through 94′.

Personal note: Adrenalin Junkie, via Snow & Wake Boarding, Jet Skis (Standup-real type), Dirt Bike & Mt. Bike Riding, Snowshoeing & Hiking are my best “Pain Killers”. RE: Endorphins, Dopamine, etc. Dilaudid used so that I can partake in these activities- need help getting started before those Divine Chemicals begin to flow!

CPSsufferer

Gabrial Brave

Gabrial Brave

In 2009 of July changed my life forever. I was just healing from a hemoglobin in my brain which was very painful. I was finally up and about and I noticed there was numbness on my right arm and leg and pain. I was panicking thinking I had a stroke went to the doctors and she diagnosed me with CPS. she looked at my X-rays and said I had brain damage also in my cerebellum. Things have changed drastically but it’s something I have accepted and learned to deal with this. I’m learning day by day what I can do and what I can’t. My brain damage is something I can’t help for example I have trouble thinking about what I’m about to say. Very forgetful, and my mind goes blank a lot of times. I am trying not to let this get me down. It’s very hard but I say to anybody that has CPS hang in there and I know it’s hard but don’t let this bring you down. It could be way worse.