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.
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!
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.
My CPS is caused by hemorrhagic stroke on oct. 3 1994. CPS began from the beginning but in subtle ways. ie… ballooning feeling of knee… general fuzziness of affected side. I look back on what I thought was stroke effects at the time that i thought all strokees encountered but 18 years later i know to be CPS effects and not just stroke affects.
I would also like to add that it was in 1997 i first got online and noticed that there was not anyone specifically paying attention to post stroke nerve pain. There were groups for aphasia and other stroke affects. I began to gather all those strokees together who seemed to need support and information about what Central Pain Syndrome (only one of the many terms it was called back then.) Then in 2000 we expanded and became an alliance of for whomever ended up with CPS from all other conditions. CPS is not rare as it was thought in those days. We all just needed to get on the same page of calling it by the same term…..Central Pain Syndrome.
I am so very proud of those working so hard on continuing the fight to bring CPS out to the world. Bless you on your journey.
The Central Pain Syndrome Foundation is a group of CPS patients and supporters who have come together to fight this crippling disease and the ignorance that surrounds it. Today, we ask for your assistance in making the CPS Foundation a leader in education, support and the research needed for an eventual cure.
Become a CPSF Founder by providing the seed money for our Federal non-profit designation costs.
Please contribute generously to the Central Pain Syndrome Foundation Founders Fund.
Please read Lisa Budzinski’s book “At the End of the Day.”
What does anyone need at the end of any day? Peace, security, purpose and love. These elements and more are discussed with the utmost honesty and vulnerability. This book is intentionally written in a different prose to make you feel as if you are sitting and having a one on one discussion, friend to friend. Providing encouragement and giving direction to inspire the reader to discover the power that can bring hope and fulfillment At the End of the Day.
My CPS journey started with a stroke in the thalamus at the age of 37 (I am now 47). Though my stroke occurred 9/2002, the severe symptoms did not show up until January 1st, 2004.
Since my family doctor and oncologist could not pinpoint why I was having such horrid pain all throughout my body, I went to the Mayo Clinic in Jacksonville, Florida. That is where my stroke was pin pointed to the thalamus but after seeing several specialists there, still no diagnosis.
In the span of 7 years I saw 3 Rheumatologists, 3 Neurologists and 3 Endocrinologists. During this time I also researched all that I could find on the symptoms I was suffering and found that CPS/Thalamic Pain fit very well and when I joined the CPS Alliance forum online, I finally knew what was happening to me was REAL and there were many others experiencing the same 24/7 pain and symptoms I was.
This horrible disease destroyed what was of my “old life”. Such as my career that I had worked so hard at building up for over 20 years. After CPS forced me to retire/disabled, we lost our home of 14 years and without health care, used up all of our savings for doctor appointments and prescription medications. As well as relying on credit cards just to buy gas and groceries.
During that time and up to now, I have seen a great need for knowledge and awareness of this disease that so few know about. Only through knowledge will others suffering with CPS be helped mentally and physically.
There is NO cure and any combination of medications that can be found to be helpful cannot and will not take away the pain and symptoms completely thus forcing those of us with CPS to figure out how to live and manage a life with dreadful pain and symptoms every hour of every day.
Hi, I’m Karen Davis, wife of CPS sufferer, mother of two, dental hygienist and secretary/treasurer of the CPS Foundation. My husband Scott was diagnosed almost ﬁve years ago, it was the result of a brain biopsy of what looked like a cyst/tumor near the thalamus. The biopsy came back benign but our lives were changed forever.
Scott was Mr. mountain man! He loved anything and everything outdoors, from skiing to backpacking you name it he did it. As a couple, we shared this love and went on many fun trips together, he even proposed on a ski trip. CPS has taken this from him and so much more. His life has to revolve around controlling his symptoms the best he can. He has to take medication every six hours, see’s an occupational therapist once a week and has MANY different doctors and appointments. It’s very hard to see the one you love in constant pain. I know he’s not the father he imagined himself to be but I try to think of it this way, maybe rather than horsing around like I know he wanted to, he’s teaching us more important values like resilience and strength of character.
For three and a half years I thought we were all alone. We went to the experts in the ﬁeld and were essentially told that Scott just needed to keep taking his meds, keep trying to work and trudge ahead. While that is ﬁne advice it didn’t give us any help on an emotional level. It was then that we found Louise Mowder’s blog, Scott ﬁnally convinced me to read it, and I literally could not believe there was someone who was using his exact same words! I immediately joined the FB group and was again amazed at how many people had my husband’s condition.
I know how hard this disease can be on the family. It is to promote public awareness and support for CPS sufferers and their families that I joined the CPSF. It is because I want you to know, YOU ARE NOT ALONE!