A Central Pain Syndrome Survivor's Perspective
In 2010, at age 50, I developed central pain syndrome (CPS) as a result of surgical resection of a persistent bleeding cavernous malformation in my thalamus.
Initial post-surgical pins-and-needle symptoms soon developed into a constant stabbing, searing, throbbing, electrifying burn, along with distorted, painful sensations and muscle tightness on my left side. Touch is extremely painful, making holding hands, reading a book, petting a cat, or grasping a tissue an excruciating experience, like razors on skin. Clothes feel like denim on a sunburn, so finding the softest cotton or flannel-like material is a necessity. Even so, soft clothes and getting dressed are an agonizing torture. On particularly bad days, my flesh feels like it is being scalded in boiling water or oil. Little did I know these symptoms would evolve, escalate, and I would be in the devastating condition I am in today.
Walking is excruciating from knee and foot pain, so I use a cane in my home or yard, and a wheelchair or mobility scooter in public. I suffered a minor knee injury years ago, which had become a nuisance with occasional pain. Since developing CPS, my damaged thalamus relays garbled, incorrect signals, telling my brain the minor knee injury feels like bone on bone, yet there is nothing wrong with it and cortisone injections do not provide relief. Unrelated to my knee pain, my foot hurts as if walking on marbles, making it difficult to find tolerable footwear. Mostly shoes without arches such as cloth tennis shoes or mesh shoes are the most doable, at least for a while. The only slippers I can wear comfortably are sock-slippers.
Usual CPS “treatments” of anticonvulsants, antispasmodics and pain medications have been ineffective. Acupuncture brought no relief, and renowned pain specialists have nothing to offer me.
Living in constant, intractable pain is not only disabling, frustrating and isolating, it is an invisible disease in itself, affecting the lives of both the patient and their loved ones. Something so simple as going for a walk around the block is no longer possible because of my pain and neurologic deficits of double-vision and balance issues. I once used to enjoy Sunday drives and outings with my spouse, but now it hurts too much to leave the comfort zone of home for any length of time, so there are fewer outings and my world has become smaller. The unavoidable limitations are very frustrating and I miss the old me! The yard and flowers I used to take pleasure in are something I now have to do in baby-steps and moderation, knowing it’s really going to hurt even hours later, yet I enjoy the outdoors and rewards of its beauty. Forcing myself to participate in activities can sometimes help get me beyond the agonies to where I can enjoy the moment, especially when extending my energy in moderation. If I push too far, fatigue and misery will be the end result.
Distraction is my primary way of coping. Reading, coloring in adult coloring books (many to choose from!), interactive computer games, activities and/or correspondence with people I know helps somewhat with isolation, providing more of a connection with the outside world. And as mundane as it may be, home chores within limits can serve as a productive distraction.
When pain is beyond distractions, I have no other option but to lie down, put a heating pad on my knee, turn on the overhead heat lamp (winter time), get as comfortable as possible and rest. With any brain injury, fatigue is a normal symptom and naps, rest and quiet time are crucial. Without enough rest, fatigue becomes stress that increases my pain and cognitive deficits and I just can’t function properly. Nighttime sleep is equally essential, and I am able to get four to six hours of good quality sleep using mild medications.
For myself, among the stressors and frustrations of having a complex disease is finding a neurologist or healthcare professional willing and/or interested enough to go above and beyond in gathering patient information, researching any new treatment options to improve quality of life, and to work with the patient as part of a team.
As a neurology patient of many years, being my own advocate has proven a necessity. I work very hard to gain knowledge of my condition(s) and to reach out to experts of leading medical teaching universities when necessary. Seeking second opinions is also a worthwhile option.
I feel public awareness is an essential beginning for gaining the interest and support from research and medical communities. Until then, central pain syndrome will remain an often overlooked topic, treatments will remain the same and patients like myself will continue to suffer.
Patti Gilstrap has been a cavernous malformation (CM) patient since 1987 and has had four hemorrhages requiring surgeries. She has multiple CMs throughout her brain.
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