Living with reflex sympathetic dystrophy

Living with reflex sympathetic dystrophy

Cold weather can worsen this chronic condition

Anne VanCuren, 59, traces the onset of her reflex sympathetic dystrophy to a 2006 fall. It took four years for her to be correctly diagnosed. The condition is so bad that she is unable to work as a nurse.
THE NEWS JOURNAL/JENNIFER CORBETT

Living with reflex sympathetic dystrophy

Cold weather can worsen this chronic condition

The flipflops on Anne VanCuren’s feet last week had nothing to do with the recent run of warm temperatures.

VanCuren, 59, of Pike Creek, wears the slip-on shoes year-round because any other footwear is too painful for her swollen, aching feet.

It’s just one of the small ways her life has changed since VanCuren developed reflex sympathetic dystrophy, or RSD, after a fall in 2006.

Also known as complex regional pain syndrome, RSD is a chronic pain condition that results from a malfunction of the nervous system. Those who live with the progressive disorder endure severe, burning pain in parts of their bodies, usually their extremities.

What’s worse, their pain can be exacerbated by the weather. Something as simple as feeling a rush of cool air from outside can turn their skin spotty shades of purple and red, while simultaneously giving them the sensation of being being poked all over by a sharp skewer.

Even in mild weather, VanCuren covers herself with a blanket when her husband, Wayne, opens the door to let their dogs out. Moving around is painful so she uses a cane; areas of her knee are so sensitive even parts of her jeans can’t touch them. She spends most of her days in the couple’s lower-level den, rarely venturing out of the house alone and never when it’s cold.

“I’m basically like a bear in the winter. I hibernate,” said VanCuren. “Even as I talk right now, my leg feels like it’s on fire. I guess I just get used to it.”

First, trauma

RSD usually develops following an accident, injury, surgery or other trauma. In children, the culprit often is a sports injury or fracture, but adults can develop the syndrome following surgery, such as for knee replacement or carpal tunnel syndrome.

Rather than healing over time, the trauma instead causes the sympathetic nervous system — responsible for the body’s fight-or-flight response — to respond in an abnormal way. For people with RSD, this can include intense pain, skin sensitivity, swelling of their tissues, tremors or other movement problems.

More than 1 million people are estimated to have RSD, with about 50,000 people in the United States are diagnosed each year, said James Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, based in Milford, Conn.

The impact of living in such intense pain tends to be underestimated. Broatch said survey of RSD patients done by researchers at Johns Hopkins University found that 47 percent of patients reported they had considered suicide.

Cold weather often is a trigger for a flare-up, but some people also are affected by heat.

“It’s a very perplexing syndrome,” Broatch said. “Most people really do get well, but there is a strong subset of 20 to 30 percent of people who never get rid of it.”

Because there are no medical tests for RSD, patients may have to endure pain for years, seeing an average of five doctors before they get an accurate diagnosis. Broatch said one of the challenges facing patients is the subjective nature of pain, which can be hard to measure. Physicians also typically aren’t trained in how to treat patients with chronic pain, and some may view their patient’s discomfort as psychological rather than physical.

Depressed, too

Even after working as a licensed practical nurse for 35 years, VanCuren had never heard of RSD. Apparently, neither had most of the dozen physicians she saw in the years following her fall. She underwent knee surgeries to repair torn meniscus and remove a cyst, while another doctor told her she needed a total knee replacement. All the while, both of her knees continued to swell and take on a purplish hue.

Eventually, the pain made it too hard to continue working, and VanCuren went out on disability.

Depression settled in — a common occurrence for those battling RSD — and she continued to seek out a health care professional who could figure out what was wrong. Even after she was diagnosed two years ago, sustained relief was hard to find.

But earlier this year, VanCuren spent five days at Hahnemann University Hospital in Philadelphia, where she underwent five days of treatment with intravenous lidocaine, a local anesthetic that stops nerves from sending pain signals. The treatment reduced her pain as well as her depression symptoms.

Six months later, the effects have faded. Doctors have recommended another infusion, but her insurance won’t cover the $42,000 cost.

As she looks at other options, she takes nine kinds of medicines, including anti-depressants and pain medication. None are narcotics because she has a sensitivity to them.

“She puts on a brave face because she’s very tolerant of pain. But I can tell by the tone of her voice how she’s feeling,” said Wayne VanCuren, who has been married to Anne for 13 years. “It’s an invisible affliction.”

‘It’s really hell’

Pain modification is key for people with RSD, Broatch said. Medications can help, but physical or occupational therapy can make a difference, although in some cases the therapy can cause more pain before it eventually decreases. Sleep also is critical.

Autumn Stevens, 32, of Harrington, has lived with RSD after a rollover vehicle accident when she was 21. It took her five years to get a diagnosis. On occasion, she’s had to go to the hospital because the pain is so intense, yet she’s faced skepticism from medical personnel who don’t know about her condition and don’t realize her sensitivity to being touched.

“I’ve had doctors think I was faking. You’re treated as a drug-seeker,” said Stevens, who takes a low dose of narcotics.

Even simple acts like getting her two kids to and from school are painful in the colder months. “If the air temperature isn’t right, it just burns,” she said. “It’s really hell.”

 

 

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4 responses to “Living with reflex sympathetic dystrophy

  1. Luckily I’m personally recovering from CRPS. I’ve had it for about 2 years now. What’s described here does sound familiar. Even though I’m doing better, I still need a cane to walk, can’t walk long distances or stand very long. And yes, the changing weather never missed her effect either. Sometimes I can’t make sense of why my foot is overreacting, also when I’m / have a fever for example it has an effect on my foot. It’s sensitive to absolutely every change I guess.
    I always loved to go to spa’s, play tennis, go snowboarding but all those hobbies are definitely still off limits in any case. I just hope I can one day I can practice those activities again but we’ll see.
    In any case my situation is still improving slowly so I’m at least slowly getting my life back, I’ve still got my hopes up to play tennis again one day, let’s hope that works out!

    To other people suffering from this extremely painful disease I would like to say : never give up, never lose hope, keep pushing your doctors and try to find (other) ways to still enjoy life in a way it gives you energy to continue fighting!

  2. She should try Nutritional Response Testing, or NET. It keeps 90+% of my symptoms gone. No drugs at all. I don’t listen to Drs on this. The NRT takes care of regulating and making sure my hormones secretion is right completely, w/o drugs. It is that simple. Check out my blog on here: isthisthecure4RSDS?

  3. First of all, I’d like to say that my heart goes out to all who suffer from RSD. I am also a victim of this horrific, debilitating, and chronically painful neurological syndrome! My symptoms began a little over eight years ago now. My life has literally been turned upside down and inside out! I enjoyed an award-winning career as a teacher, but I resigned several years ago because of my health! My symptoms have progressed dramatically! Truly, if it had not been for my relationship with God, I don’t know how I would handle all that I go through on a daily basis!

    I also have a blog on WordPress.com. I share about RSD, to try to help bring about awareness of this life-changing syndrome. It is a very sad commentary, that so many physicians know very little about it! God bless you!

    Paulette

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