Out of the fire, a phoenix emerges
By Karen F. Mrnarevic
Pascack Valley Community Life

Photo courtesy of Pamela Curry River Vale resident Pamela Curry, diagnosed with Reflex Sympathetic Dystrophy earlier this year, will participate in the Walk for Hope and Possibility, a five-mile walk in Central Park on June 28. She says she saw the walk as the perfect opportunity to push herself to get out of her wheelchair and back on her feet.

Thus began Pamela’s journey into a world she had never known existed, a world of persistent, inexplicable pain, electric zapping spasms that radiate across her legs, arms, hands and back, and a disease that some doctors don’t even believe is real – Regional Sympathetic Dystrophy (RSD).

Pamela, a River Vale resident, had just concluded a long recovery from pneumonia, and had been working out moderately to get back in shape. Her knee pain had been getting worse, but it was bearable until the day it finally got out of control, and Pamela found herself completely incapable of walking. She sought help from an orthopedist, who ran an MRI and found that one of her knees was almost completely depleted of cartilage. But responding to the intensity of the pain Pamela was describing, the orthopedist referred her to a rheumatologist and suggested that she might have arthritis or lyme disease. The rheumatologist offered a disturbing possible diagnosis – avascular necrosis, or the death of the bone tissue surrounding the knee.

Throughout the process, Pamela was stricken by how odd it was that only one of her knees seemed to have sustained injury, but the searing pain was equally as bad in her other knee. Seeking another opinion, she went to the Hospital for Special surgery, where a doctor finally suggested that she might be experiencing RSD. “I didn’t know what RSD was,” Pamela recalls, so her first instinct was to be relieved she did not have avascular necrosis. “I called my internist and I was all excited. I said, ‘I don’t have necrosis, I have RSD.’ And he said, ‘You need to come in immediately.’ I went in and he explained to me what RSD was, and I think then that it really sunk in.’”

RSD, also known as Complex Regional Pain Syndrome (CRPS), is a chronic neurological syndrome characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. It is unknown what causes RSD, but its onset is often preceded by a soft tissue injury, like a broken bone, burn, laceration or nerve injury. The pain is usually disproportionate to the severity of the injury it accompanies, and it worsens with time and can spread to other parts of the body. For many, the condition is progressive, and can last forever.

Since being diagnosed, Pamela’s RSD has spread. “I have it in my elbows in the backs of my hands and in my knees. My sympathetic nervous system… is completely engaged. I can tell you when it’s going to thunder. It’s like my body gets electrocuted.” Immediately following the diagnosis, Pamela was confined to a wheelchair, and until she surrendered to her doctor’s prescribed drug therapies, the pain was debilitating. But she began to do research on the disease, and soon learned that movement could be her best friend.

While doing online research, she came across the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), a not-for-profit organization established in 1984 to raise awareness of CRPS, educate the general public and the medical community, and fund research. When she read about the RSDSA’s largest annual fundraiser, the Walk for Hope and Possibility, a five-mile walk in Central Park on June 28, she says she saw it as the perfect opportunity to push herself to get out of her wheelchair and back on her feet. “I thought, 'Well, this is perfect, it’s March, certainly by June, I should be able to [walk],'” she says. “I thought, 'I have to sign up for this. I have to set goals.'”

With help from her family, her sister, husband and parents, Pamela began with baby steps – walk from the kitchen to the back door one day, walk around the pool the next. “I have gone from not being able to walk to waking up every morning and saying, ‘Ok, what am I going to do today? How am I going to get through the day? How am I going to battle this disease without letting it get me down?” And her persistence has led to remarkable improvements in her mobility; on Feb. 22, she was confined to a wheelchair, and on June 17, she walked four miles.

Pamela’s experience hasn’t been all about triumph. Pain is a constant reality for her. “I’ve been in physical therapy, and you put a feather duster on my skin and it’s like nails. And I just lay there and I cry. But I know that it’s helping me,” she says. If she can help herself, Pamela believes that she may be able to help countless other like her. “It’s the weirdest disease, and people have never heard of it. But I know there are people out there with it and I just want to raise awareness, because if people have these symptoms and can’t find the right doctor and are suffering, I feel really bad,” she says. “If I do nothing else on this earth but raise awareness about this disease and touch one life and help one other person who may have this, then I will have accomplished something.”

Pamela has already raised over $1,500 for the RSDSA. And on June 28, she plans on pushing her body to its limits, walking five miles, and crossing the finish line at the Walk for Hope. “It started out as a personal goal, you know, ‘Pamela, can you do this?’ Now I know I can do this. So now I hope I can show other people how they can do it. I know there are going to be people there who are in wheelchairs… but maybe I can just be a bit of an inspiration to them.”

She hopes that the walk will bring her closer to people who can identify with what she experiences everyday – “the burning and the zapping, and how a feather duster looks so gentle, and yet it feels like a knife. And how your husband’s hands at one time are so tender and then they feel like a porcupine, which is really hard on him too.” She says the hardest part of living with RSD is seeing the effect it has on her family. Jack asked me what are the hardest things that you’ve had to go through, and I’ve said, ‘to watch the pain in your eyes and my parents’ eyes watching me in pain,’” she says. “So lots of times I cry alone if I cry, because I don’t want to hurt other people.”

While some doctors are reluctant to classify RSD as a disease, Pamela says that she has been lucky that her internist is a believer. “As long as I have him treating me I am fine,” she says. “Without him, though, I don’t know where I would be.” She says she can imagine that there are many people who suffer needlessly at the hands of doctors who choose to overlook a diagnosis of RSD, given the fact that symptoms, while concrete to those experiencing them, are difficult to quantify through testing.

She advises anybody who is experiences symptoms like hers to consult as many doctors as it takes it get relief and not to be discouraged by doctors who dismiss it as psychosomatic. “It’s a real disease where the nerves truly cross-fire,” she said. “Don’t give up, don’t think you’re crazy.” She also cautions RSD sufferers against surrendering to the pain and retreating hopelessly into themselves. “You can have a really bad day, but the next day can be better,” she says. “If you have a bad moment, it doesn’t last forever.” And lastly, she says, physical activity, while it may seem like torture to an RSD sufferer, is the key to improving mobility and lessening pain. “The worst thing with RSD is to be sedentary. You’ve got to move,” she says. “It’s so easy to take naps… I set the alarm to get up early, I start my physical therapy. If I don’t do it, I don’t get well.”

Speaking with Pamela, her eyes bright and her face full of joy despite the pain that courses through her limbs almost constantly, it is easy to imagine her as a motivational speaker. She did not choose to be stricken with condition that may effect her the rest of her life, but she is making the best of the hand she has been dealt, and it is impossible not to feel inspired by her.

“My mom, one time when I was really young, she gave me this card. It said, ‘If you can imagine it, you can achieve it. If you can dream it, you can become it.’” Pamela pauses to reflect on how the meaning of the words has changed for her. “I have come full circle now, because that little card is my motto for life.”

Source

June 22, 2009