Experience leads woman to begin a pain support group
The first time Connie Hughes tried to bring together people with reflex sympathetic dystrophy syndrome, no one showed up.
But the Arlington resident, who has the disorder, understood what was keeping people away: pain.
“One day you might feel good, but the next day you can’t even get out bed,” Hughes said. “It cripples us.”
The chronic condition is characterized by severe burning pain, excessive sweating, tissue swelling, pathological changes in bone and skin and extreme sensitivity to touch, according to the Reflex Sympathetic Dystrophy Syndrome Association. Most cases are in adults between the ages of 40 and 60. Millions of people have the disorder, but it often goes misdiagnosed.
Hughes went on to organize the Southwest Texas Chapter of the association. The support group meets the third Saturday of each month. About a dozen people with the disorder as well as friends and relatives participate.
“They’re at different stages, but every patient shares one common factor and that is excruciating pain,” Hughes said. “Some come in wheelchairs, on crutches or with canes.”
How did you discover you had RSDS?
I had surgery in 1997, and instead of having general anesthesia, I had three epidurals. Seven months later, I had a lot of pain on my left side. I was referred to a neurologist who said I had RSDS.
What is RSDS?
People think it’s related to muscular dystrophy, but it’s not related to that at all. It may be a cousin of multiple sclerosis. When I had the epidurals in my spine, it did some damage to the nerves. I was told there is no cure. That meant I was going to have to live with the pain.
Is there any treatment?
Nerve blocks help with the pain. I got relief for about a year. Then I had a relapse, and it hit with a vengeance. Now I have full body RSD. It’s in all my limbs and organs.
Why is so little known about it?
It goes back to the Civil War, but it hasn’t come to the forefront because people have been misdiagnosed. Some women in the support group thought they had arthritis.
How does it affect people’s lives?
My life is restricted. I used to be able clean house in a day, but now it takes me a week or more. It affects people mentally, physically and emotionally. I’m totally disabled. .. I drag my leg and am partially paralyzed on my left side. I have seizures and osteoporosis. I don’t drive.
Why did you organize the support group?
The support group is all about educating, family, friends, even doctors. … I knew there were people out there, and I wanted them to know they were not alone.
Occupation: Support group founder
Experience: Hughes has experienced the pain of reflex sympathetic dystrophy syndrome since 1997.
About the support group: The group meets the third Saturday of each month. People can call Hughes at 817-465-1584 for more information.
Family: Hughes has a service dog named Sandy who retrieves items and performs other tasks for her.