The cost of living with pain

The cost of living with pain
Thursday, October 05, 2006 10:22:01 PM

The cost of living with pain

“My entire leg is on fire, it’s an inferno,” she said.

A task as simple as putting on a pair of socks or a dress can become a nightmare for her. The sheets on her bed had to be changed to something softer. Her husband and three children have adjusted to it, but life is still a struggle.
White suffers from a misunderstood and little known condition called Complex Regional Pain (or CRP). According to the American Academy of Family Physicians, “no single drug or combination of drugs gives long-lasting relief to patients with this problem.” It can occur after surgery, a heart attack, a stroke or other medical problems.

The day after an operation on Feb. 27, 2004, she felt something was wrong with her foot. After several visits to the doctor, she was finally diagnosed with CRP, on December of 2004.

“I have to just pray that it goes away,” she said of the pain.

“My swelling is still in my foot, it’s still in my leg. I’m not diabetic, but I have to wear diabetic socks. I went from a 11M shoe to a 13 doublewide shoe for the right foot alone.”

When she discovered that the condition affects children, she decided enough was enough. White has had several resolutions passed in her honor (#147 and #50 respectively), as she emerges as an activist and educator against the condition.

“I became angrier after I found out it affects children,” she said. “For them to have this awful disease at such an early age…it angered me because medical science can put a man on the moon, and a machine on Mars, but we have no cure for CRP.”

She also received a resolution from the Detroit City Council earlier this year. But she still has to suffer through the pain, supporting herself with a cane or by using a scooter. Physical therapy makes the pain worse.

“Right now the disease is eating the muscle in my leg,” she said. “Jesus Christ is my inspiration. He says He’s not going to put more on me than I can bear, and I believe that. I do use vitamins and some herbs. I’ve been researching Egyptian medicine. I use Dead Sea salt in my bath water. My pain level on a daily basis is 7 from a medical perspective. If you look at it from my perspective, it’s totally off the chart. I told Dr. Scott I was going to get a bill from the state.”

Dr. Tara Long-Scott, her podiatrist, has seen quite a change come over White, and was at first skeptical because no one had really taken up the mantle for CRP.

“That’s the thing about Mrs. White, when she said she was going to do it (get resolutions passed) – she did,” said Long-Scott. “She is trying to increase awareness in the general public and the medical (field); she’s also pushing for more research. Doctors know about it (but) because it’s so misunderstood, it’s so important that there’s more awareness.
It happens more commonly in women than men, but it can occur at any time.”

White has started her own support group at People’s Community Church, which meets every last Friday of each month. The purpose of the group is to educate and promote awareness to support other RSD sufferers, their families and givers, or people who are just interested.

“Don’t ever give up,” she said, offering advice to others who are suffering from the condition. “I keep saying I have 68 more years before I stop walking on my own power, which equals 120 years, that’s the type of fight that I’m putting forth and that I won’t quit. I’m not going to just sit down or lay down.”

For more information on Complex Regional Pain, or to join the support group, call (313) 871-4676. The meetings are held at People’s Community Church, 8601 Woodward.

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