Mustang resident Tracy Jones rushed to a local emergency room with chest pains, terrified she was having a heart attack.
As doctors tried to treat her, Jones learned none of them had ever heard of reflex sympathetic dystrophy, a severe pain disorder she has suffered with for eight years. Her attack turned out to be another symptom of the disabling syndrome.
“That's why we have to get it into the medical community,” she said. “That this is real, because if they can find it within the first three months you have a better chance of it going into remission.”
Jones pushed this fall and received a proclamation from Gov. Brad Henry declaring November RSD awareness month. She is also creating a support group, and has already met a dozen other Oklahomans with the disease.
RSD is a malfunction of part of the nervous system in which nerves misfire, sending constant pain signals to the brain, reaching the level of having a limb amputated without anesthesia. RSD also can cause swelling of the internal organs.
Sufferers eventually lose motion in joints and muscles because they stop using affected areas due to the intense pain that is caused when they move. It is rare for RSD to lead to life-threatening symptoms, Jones said, but about 40 percent of sufferers are believed to commit suicide to find a release from the pain.
“No matter what I do, I am still losing mobility,” she said. “I cant even hold a blow dryer anymore ... I can't lift even that laundry out (of the washer) because I get sharp pains that go up my whole arm.”
While people she's met with RSD have different symptoms, most can trace the illness back to an accident, injury or medical procedure.
Jones said she believes her RSD is connected to an intravenous pain medication she received at a local emergency room seven years ago when she was treated for gall bladder problems. Her right arm quivers constantly, and the slightest touch or sound sends her into agony that radiates throughout her body. It took seven months of visiting doctor after doctor before Jones found a diagnosis.
The youngest RSD victim Jones said she met is a 13-year-old Oklahoma boy who developed the condition after breaking his ankle. A 16-year-old Cushing girl developed RSD after suffering neck injuries during a school bus accident. Before the accident, she was on her school's cheerleading squad, Jones said.
Because little is known about RSD, Jones said some people don't believe the syndrome exists. She said she's been accused of being mentally ill or a pain medication addict. Jones said the pain she feels is real, and the medication she takes dulls it just enough that she can get out of bed for a few hours each day.
“They are getting harder and harder on us, but our medication is no different than for diabetics,” she said. “They have to have insulin. I have to have pain medicine. It doesn't make me an addict — if I don't have that medicine, I can't get up.”
Other than trying to dull the symptoms, the only treatments for RSD are still experimental. Doctors in Arkansas have started a trial procedure, Jones said, in which the RSD patient is placed in a drug-induced coma-like state and slowly resuscitated over several days. Jones was accepted participate two years ago, but because the procedure is experimental, her health insurance won't cover it. The procedure is expected to cost $25,000, but her family hasn't been able to raise the money.
Jones said she's let go of her dream of having the treatment. Instead she focuses on her family, husband Kevin and their sons Jesse and Kody, to keep her going.
“I have a lot of faith, and I can't quit for my kids,” she said.
For more information about RSD, visit Jones' support group Web site at www.oklahoma rsdcrpssupport.com.