My Story: Living with Central Pain Syndrome

My Story: Living with Central Pain Syndrome

Between 1987 and 2010 I had four brain hemorrhages from multiple malformed blood vessels known as cerebral cavernous malformations (CCMs), requiring four surgeries.

The most devastating hemorrhage occurred in 2010 in my right thalamus, near the brainstem. When I woke up from surgery, my entire left-side was numb and non-functional. I also had a pins and needles sensation in my left hand.

Patti Gilstrap

Patti Gilstrap

While in the hospital, I was fortunate a nurse identified the pins and needles as “thalamic pain,” also known as central pain syndrome or CPS.

Over the next several weeks, I required intensive rehabilitation to re-learn how to walk, regain my strength and adapt to the “new me.” About two months into my recovery, my physiatrist (a rehab physician) prescribed Lyrica for CPS. Unfortunately, it would become one of many unsuccessful attempts to relieve the pain.

After about six months my left hand burned so badly that I inadvertently gave myself frostbite by overusing ice packs. Fortunately, my frost-bitten hand did heal.

Presently, the symptoms continue to evolve in the worst imaginable ways, affecting my entire left side with a constant burning, stabbing, and throbbing pain that remains unaffected by even the strongest opiate painkillers. Try to imagine feeling as if parts of your body are constantly on fire, with no way of putting out the fire.

CPS is very complex, poorly understood and is caused by damage to the central nervous system. There is no cure and treatment is essentially limited to medications such as anti-convulsants, anti-depressants and anti-spasmodics prescribed through my neurologist. My experience with these medications has remained unsuccessful in providing relief.

Since every basic and slightest movement or activity increases my pain, my lifestyle and my husband’s have changed dramatically.  Activities we once enjoyed together are either modified to accommodate my needs, or are not doable. Something as simple, yet enjoyable, as holding hands or petting our beloved cats, now feels like razor blades on my affected hand.

GE DIGITAL CAMERAMy favorite clothes have been replaced with the softest cotton or flannel material, to help avoid the full impact of the inescapable abrasive feeling against my skin.

CPS makes walking very painful, affecting my mobility, requiring the use of a cane around the home and a mobility scooter during public outings. Wearing shoes is often unbearable, because they add to the painful sensation of walking on marbles or rocks. The most inexpensive, flat insole and arch less boat shoes are the most tolerable.

I am now 54. I’ve observed my own decline and often fear how much the pain and symptoms will progress as I age, as well as the unknowns of what constant pain is doing to my body.

I’m extremely blessed in having a supportive spouse and family. A small circle of friends who live in chronic pain also bless me with their understanding and support. We do our best in keeping a sense of humor, staying active within limits and advocating for myself and others with this devastating condition.

Awareness and research is the foundation of my hope for a better tomorrow. Please visit the Central Pain Syndrome Alliance or watch this video:

Patti Gilstrap and her husband live in White City, Oregon.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Patti Gilstrap

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Patti

Hi Paula,
Thanks for your response. 🙂
I empathize with all of us for living with constant pain – it’s just awful, but as you said, “try to make the most of the present & hope for a better day tomorrow.”
I’ve heard mixed comments re: ketamine, so have not pursued it, but am glad if it’s given you some relief.
Well-wishes & minimal pain days.

Paula Sheerin

Hi Patti, I too have a lot of head pain and I know how difficult it is to live with it. I have a mix of Trigeminal Neuralgia and Complex Regional Pai Syndrome in my eye, face and head. As we are using similar pain meds for neuropathic pain, I wonder if you have considered using ketamine which has been found to be very good for that type of pain.
You can contact me by email or on Facebook if you would like more info or just to talk. I’m female, 58 and live in Ireland and like you, I worry about the future.but try to make the most of the present. I hope for a better day tomorrow.
Please don’t publish my email.

Patti

Well-wishes & gentle hugs to you, Marcia.

Marcia Johnston

Like Patti I also have Central Pain Syndrome and without having the Central Pain Alliance members collective knowledge to draw upon I would have been lost. Thanks to articles like this being published knowledge of CPS will grow and hopefully one day relief will be available. Hugs from Australia