Excerpted from "When the Pain Never Goes Away," Stroke Connection Magazine September/October 2003
A consistent theme among central pain syndrome (CPS) survivors we contacted is the belief that most doctors don’t understand. Dr. Swift points to the fundamental issues of time and money. It takes a lot of time to treat a patient with CPS, and that treatment will likely go on for a long time without substantial improvement – two circumstances that insurance companies are likely to challenge. Reimbursement does not begin to cover the amount of time necessary to investigate this mysterious syndrome.
“Obviously, doctors cannot lose money on every transaction and stay in business,” Dr. Swift says. “But I’m not concerned with doctor’s incomes. I’m concerned with the care of patients. When doctors sit down with them, patients feel better. That’s called healing, and doctors are supposed to do that, but they can’t because there is no reimbursement for the thing that really makes being a doctor worthwhile, being in the trenches with the patients.”
He also identifies doctor-patient communication as another problem, one compounded by the lack of time spent together. When they only have a few minutes, “It’s hard for patients to remember more than a couple of things. They’re scared, they’re hurting and they’re having a hard time taking in what the doctor is saying.”
“For instance, I might prescribe a tricyclic anti-depressant, and I would explain that it makes you feel better by changing your brain chemistry, so you won’t feel better for three weeks. But when the patient returns, they tell me they took it for a couple of days but they didn’t feel better so they stopped taking it.
“Add that to the feeling that they aren’t really getting meaningful time with the doctor, and you can see why patients feel like they’re not being served.”
To help clarify communication, Dr. Swift says that patients should go into a visit with their doctor informed about their condition. “Either get on www.PubMed.com or go to a patient support group Web site,” he says. “Have your questions written out and don’t let the doctor leave the room till he’s answered them.” He also suggests tape-recording your session with the doctor.
Advice to Caregivers
Just as pain takes all the energy of those who have it, it drains other members of the family. Central Pain Syndrome (CPS) isolates those who have it because the pain causes a person to be constantly focused on an interior state and on guard against what could make it worse.
“Spouses and others need to cut people with CPS some slack,” Dr. McHenry says. “They need emotional support. Some people are embarrassed to talk about it. They are embarrassed to say they don’t care about anything else because it is so bad. They feel broken. They have lost their human dignity. They are very isolated.”