Patient Story

My Journey with Central Pain Syndrome (CPS)

My Central Pain Syndrome (CPS) journey started with a stroke in the thalamus at the age of 37. Though my stroke occurred September, 2002, the severe symptoms did not show up until January 1st, 2004. This is very common for this type of neurological condition. At the same time, my thyroid was growing at a fast pace due to papillary cancer. Thyroidectomy was immediate but I will continue to live with Grave’s Disease the rest of my life. This thyroid madness is an entirely different story.

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. After years of research and proof of my stroke in the thalamus, I was finally diagnosed with an Intractable Pain condition know as Central Pain Syndrome post-stroke, as well as other auto-immune diseases.

This horrible disease destroyed what was of my “old life”. Such as my professional legal 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. This was very hard since I had been my husband’s caretaker through all his surgeries and infections since 1987.

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. I devote many hours each week to advocating, learning, writing, and helping others with any type of chronic illness and pain.

There is NO cure for CPS 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. And on little to no money.