People: Cindy Lange-Kubick: RSDS, the devil that won’t kill you

Cindy Lange-Kubick: RSDS, the devil that won’t kill you

Posted: Tuesday, March 27, 2012 9:00 am

Heather Kuhl hugs her daughter, Rose, outside their home in Lincoln. Heather is planning to leave next month for treatment for RSDS in New Jersey. (KRISTIN STREFF/ Lincoln Journal Star)

First, they put the long, thin needle into your spine. The pain is excruciating, but it’s worth it because you have pain already, after all.

You have pain every minute of every day, despite the 13 medications you take and the pack you wear on your hip with the electrodes attached to your legs to zap the worst of it.

You go to bed in pain. You wake up in pain — 4 a.m. Monday — your feet on fire, your legs like someone is stabbing you, over and over.

You want to scream, but you don’t.

You want to give up, but you don’t.

You have Rose, that’s why. The squirming girl you call Monkey, your little redhead with Down syndrome, sleeping in the bedroom you share.

And you have Anthony, your “little man,” driving already, almost grown up.

So even though you have RSDS — reflex sympathetic dystrophy syndrome, better known as Hell — you hold on.

And you look forward to the long needle in that hospital in New Jersey next month.

Because the needle is followed by the infusion of drugs, and that is followed by something no money can buy: hope.

Hope is why Heather Kuhl drove from her childhood home in north Lincoln to Home Depot on Monday to pick up a drill, a donation to add to a silent auction.

The auction is Thursday night at the Tack Room.

“We don’t know what we’re doing,” says Heather, 41. “We have no clue.”

But the money raised will go toward expenses not covered by insurance for her trip to New Jersey — to see the same doctors who gave her three years without pain.

You can see the pain etched on her face as she holds Rose. She has whole-body RSDS. Face, arms, hands, legs.

“Every place but my back.”

You do not want to get RSDS. I’d never heard of the disorder before I visited a Lincoln woman in 2000 whose friends had organized a fundraiser.

“The pain is so intense, you go crazy,” Bunny Stovall told me that day. Like heated knives, slicing into the sole of her injured right foot, then twisting.

I’ve heard more stories since, all of them terrifying.

An accident, an injury, something that causes nerves to be damaged. Instead of recovery, the pain gets worse. Some victims beg for the damaged limb to be amputated. Some wish for death.

For Heather, it started in 1997. She hurt her wrist and shoulder from repetitive motion at work.

The arm swelled, turned purple. It took six months to diagnose. The treatment — sever the sympathetic nerve — made the RSDS better initially and, by 2001, she was well enough to work again, go back to school and study accounting.

“I wanted to make something of myself,” she says. “I came close.”

Two years later, she was in a wheelchair. This time, the pain was everywhere. She begged her family to let her die.

Then she found out about a pain clinic in New Jersey. They inserted the long needle in her spine, the infusion of drugs followed, and she had nearly three years without pain.

The RSDS came back, a few months before she got pregnant with Rose.

She lives with her parents now, in the house where she grew up.

She has lots of doctors. A GP. A pain doctor. A foot doctor. A chiropractor. A psychologist.

The first time she went to see Dr. Maria Prendes Lintel, the psychologist asked her a question.

On a scale of one to 10, where is your hope?

One, Heather answered.

She asked again, a few weeks ago.


Heather holds Rose. It hurts. It hurts to be touched. She wants her children to touch her.

She’s on her way to pick up that drill. Dr. Maria donated some pottery for the auction. Her chiropractor donated a pillow.

She hates to ask for help, Heather says. “I never know what to say.”

Then she thinks about New Jersey. Angel Flight has paid for her plane ticket. Medicaid will pick up 80 percent of the hospital bill.

“I don’t know if it will work this time,” she says. “I don’t know for how long it will work, but if I could have one day without pain …”

You want to help her.

Reach Cindy Lange-Kubick at 402-473-7218 or

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