News

RSD leaves long-suffering woman in unrelenting agony
By David Bruce
david.bruce@timesnews.com
Jeanne Pamula has been living with chronic severe pain since 1984. Jeanne Pamula undergoes a therapy session at her home with John Raup, a physical therapist at Great Lakes Home Healthcare. (Jack Hanrahan / Erie Times-News)


Jeanne Pamula gritted her teeth and stared at her living room wall.

A physical therapist gently rubbed the muscles above her right ankle. Each touch sparked intense, searing pain that Pamula compared to childbirth.

"Some days I'm so sensitive that the slightest touch can start me crying," Pamula said. "Imagine severe, burning pain every second of your life. I can't even sleep through the night."

Doctors have diagnosed Pamula with reflex sympathetic dystrophy syndrome, commonly known as RSD and also called complex regional pain syndrome. Her illness has several names, but no definite cause or cure.

Pamula is one of between 2 million and 6 million Americans with RSD. Many of them are misdiagnosed or are told they are imagining the pain.

"Why would I imagine this?" Pamula asked as she sat in a blue recliner in the
corner of her living room. "I want to live a normal life and go to work. I don't want
to stay here all the time."

RSD usually occurs after an injury, though it can strike after trauma as minor as a
vaccination. The nervous system malfunctions, causing the nerves to send constant
pain signals to the brain.

Pamula's illness began in 1984 after she slipped on a patch of ice and dropped a propane tank on her right foot. The pain wouldn't subside, even six weeks after the accident.

"I was treated with several powerful pain-blocking medications, which worked for a while," Pamula said. "A few months later, my neurosurgeon recommended cutting me from my belly button to my tailbone to sever the sympathetic nerves in my spine.

"I was told the surgery would either allow me to live pain-free forever or make me
a paraplegic," Pamula said. "Forever lasted five years."

Pamula danced at her wedding to David Pamula, but she woke up one morning in 1990 with pain in the big toe of her right foot.

Over the next three years, the constant pain spread up her right leg and down her left. Walking, let alone dancing, became impossible.

Pamula now spends most of her time in the blue recliner. Almost everything she needs is within arm's reach: pens, hairbrushes, scissors, a lighter, a bag of chocolates, a remote control for the television and several bottles of painkillers. It takes about 20 pills to get Pamula through the day and night, but the pain never goes away.

"I sleep in this chair because the pain won't let me lie down," Pamula said. "I have slept through the night once in five years. I usually get less than two hours a night."

Insomnia is not unusual for people with RSD, said Michael Stanton-Hicks, M.D., a pain specialist with The Cleveland Clinic.

"The pain is constant, but it seems worse at night because the patient isn't distracted by anything," Stanton-Hicks said.

Pamula's level of pain depends on the weather. She spends cold or rainy days under a heating blanket, almost unable to move.

On warm summer days, her personal care attendant, Lori Putnam, helps her shower, dress and climb into her wheelchair. It may take Pamula two hours to get ready to go out.

"We may visit a store or two, and I'm exhausted — and that's on a good day," Pamula said. "Once we get home, I rest or take a nap."

Doctors don't know what causes RSD, but Stanton-Hicks said there probably is a genetic component — meaning it tends to run in families. Pamula's grandfather suffered from the illness much of his life but wasn't diagnosed until shortly before he died at 98.

"Long before I ever developed RSD, my grandfather gave me a wonderful piece of
advice," Pamula said. "You can be miserable all the time and no one will stick around you, or you can be as happy as you can be and try to deal with it."

Dealing with RSD may be Pamula's only option. No cure exists and doctors simply treat the symptoms and attempt to reduce the pain.

One problem is that the illness is difficult to diagnose. RSD's early symptoms are similar to multiple sclerosis and other diseases, and doctors must rule those out before starting the standard treatment of pain medications, physical therapy, lots of rest and stress reduction.

"Different patients respond to different treatments," Stanton-Hicks said. "One treatment that has worked is neurostimulation, where a device is implanted or we use needles to deliver (electrical) stimulation to the spinal cord or the psoriatic nerve."

Neurostimulation can block the sensation of pain, masking it with a tingling feeling.
However, it doesn't work for all patients and works best within the first year of diagnosis.

Early diagnosis increases the chances RSD can be stopped and its effects reversed.

Pamula hasn't been so fortunate. The searing pain has advanced down her left arm, making it almost impossible for her to use her left hand. Doctors have told her it has even affected some of her internal organs.

"I know it's destroying my bladder and my intestines," Pamula said. "It takes me
45 minutes just to pee."

Her faith, her husband, David, and her friends and family are what help Pamula make it through each painful day. Others who suffer from RSD can't do it.

A significant number of RSD suffers in northwestern Pennsylvania have killed themselves to end their pain, said Pamula, who is secretary of a local support group.

"Suicide is often associated with any kind of chronic pain," Stanton-Hicks said. "If treatment isn't able to control the pain and the patient's psychological response to it, they may lose all will to live."

Pamula said she is still able to enjoy life, especially sharing laughs with family and friends. Still, she remembers what life was like before she fell and fractured her right foot.

"I was 28 when that accident happened — the prime of life," she said. "I've been robbed as far as I'm concerned."

Source

June 7, 2004


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