Excerpted from "When the Pain Never Goes Away," Stroke Connection Magazine September/October 2003
In addition to the physical pain caused by misfiring neurons, CPS also has a psychological component. Not only is the nervous system under assault from extreme, unrelenting pain; a person’s psyche is under assault as well. Survivors with CPS may need psychological care, along with medication such as tricyclic anti-depressants to help them have some experience of life outside their pain.
Most of the survivors we talked to had or were taking anti-depressants with varying results. One survivor in Washington state, where use of medical marijuana is legal, says that the marijuana had helped her the most, providing both pain control and a sense of well-being. Since 1996, ten states have legalized medical marijuana use: Alaska, Arizona, California, Colorado, Hawaii, Maine, Nevada, Oregon, Vermont and Washington. (On June 7, 2005 the Supreme Court ruled that the federal government can still ban possession of marijuana in states that have elimated sanctions for its use in treating symptoms of illness.)
As with other stroke deficits, CPS removes people from normal living. Besides constant pain, there is always an underlying concern that too much movement or a change in the weather will explode into a full-blown pain episode.
Amanda, 45, survived a double brain aneurysm. She describes her situation as “burning, searing pain that feels swollen, as if the skin around it will explode. Muscles in a knot. Skin all over so sensitive sometimes I can’t even get dressed. I can only wear the softest clothes. My feet are so tender to walk on that I fear I may not be able to walk at all soon. I’m sensitive to changes in temperature and mostly can’t be touched at all without pain.”
Virginia Peter survived a cavernous angioma (clusters of abnormal blood vessels) in her right thalamus almost three years ago. “Bad weather can really irritate the CPS to a point where I just want to sleep. When I take some of the pain meds, I am pretty knocked out, so I can’t participate in much. My hand is probably the worst place of pain. When the CPS is at one of its roaring times, I cannot tolerate using my hand at all. Therefore, I am not willing to participate in normal activities such as preparing a meal or using the computer.”
Robert has stood against his relentless pain for more than a decade. “I cannot run or hold things with my hand. I cannot walk very far without great pain going from bad to worse. When it gets worse, it stays that way the rest of the day.
“My left-side movements are jerky, I must always have my left hand in my pocket, or squeeze it with my right hand, or sit on it. The pressure helps the pain some. I have double vision so it’s difficult to drive or do anything that takes depth perception. I limp still. My mobility is limited. At first I didn’t even want to leave the house…gradually I got to where I would drive to work, but I didn’t want to travel anywhere that I didn’t’ have to.
“Pain, as I have it, consumes so much of your energy, you cannot enjoy life as you knew it. Nothing sounds like fun anymore. I guess you want to withdraw from life to deal with pain, as there’s not room for fun and pain in the same sentence. Sometimes, even with the medication I’m on, I don’t want to participate in anything. I must guard my existence, for I feel I may fall over the edge at times.”