Penny Carrington’s health had been deteriorating in ways that have puzzled virtually every doctor she’s seen over the past 15 years.

 Rahul Rastogi, MBBS, and Penny Carrington discuss her treatment plan.

“I would get dizzy. I would lose feeling on one side of my body. It felt like there was some kind of barrier between me and whatever I was touching,” Carrington says. “When I took a shower, the water would feel warm on one side and cold on the other side of my body. I couldn’t feel the wind on the right side of my face, but I could feel it on the left side.”

Strangest of all, she had a spot on her arm, about the size of a quarter, where it felt as though someone was “drilling into my bone.”

Her symptoms started shortly after she was treated for a pulmonary embolism (a blood clot in the lungs) in 2004. She says she was starting to recover and ease back into her normal routine, including exercising every day. “Suddenly, I was worse.”

Afraid it might be another blood clot, she went to the emergency room and to her primary care doctor. It wasn’t a clot.

“We don’t know what it is”

Carrington, a systems analyst who lives in Ankeny, Iowa, spent the next two years trying to figure out what was wrong with her.

“I got sent to a lot of specialists,” she says. “All I got out of that was, ‘Yes, you have chronic pain. Yes, you have some neurological and gastroenterological issues. We don’t think your pain is related to that, but we don’t know what it is.’ And they sent me home.”

In the meantime, she was missing a lot of work and had thousands of dollars in medical bills that her health insurance didn’t cover.

And her symptoms got worse.

“I had periods where I’d end up in a wheelchair, not because I couldn’t walk, but because I was so dizzy,” she says. “I made arrangements to work from home because I couldn’t even handle the two-block walk from the parking lot to the office.”

She “kind of went adrift for a while” trying to solve her medical mystery.

“I couldn’t afford to do much,” she says. “And where do you go when you’ve seen everybody?”

A suggestion from an online friend

Carrington began chatting online with people who also had symptoms no one could explain, and one of them suggested she look up Dercum’s disease. Dercum’s is an extremely rare, progressive disorder characterized by multiple painful growths of fatty tissue under the skin. In addition to debilitating pain, symptoms can include weight gain, depression, lethargy and confusion.

Dercum’s is more common in women than in men, but no one knows what causes it, and there is no known cure. It’s so rare that no one knows how prevalent it is, and it is assumed to be under- or mis-diagnosed.

Even Carrington didn’t think Dercum’s explained her symptoms.

“I looked into it and thought, ‘No, I don’t think so,’” she says. “It took me about a year to be convinced that, yeah, this could be it.”

She finally told her primary care doctor in central Iowa about it. He was skeptical.

“He had never heard of it, so he looked it up while I was there and told me I should spend less time online,” she says.

Carrington went back online, looking for a physician who knew about Dercum’s. She came across Rahul Rastogi, MBBS, director of the Pain Management Clinic at University of Iowa Hospitals & Clinics. Over his 20-plus years in practice, he had successfully managed pain in several Dercum’s patients. Carrington asked her primary doctor for a referral.

“I just wanted to rule it in or rule it out,” she says. “After 15 years of searching for a diagnosis, that’s what I was hoping for. If you don’t know what you’re fighting, it’s really hard to win.”

Finally, an answer

She saw Rastogi for the first time in August 2018.

“After he had all the information, it took him all of 30 seconds to say, ‘Yes, that’s what you have. Let’s get you on a treatment plan,’” she says. “I was thrilled. I hadn’t even expected a treatment plan.”

Rastogi explained the disease and discussed the risks and benefits of mexiletine, a drug most commonly used to treat some forms of irregular heartbeat. It is structurally similar to intravenous lidocaine, an anesthetic, which gives mexiletine its pain-relieving properties. However, it also can interfere with liver function and requires close monitoring.

Rastogi started Carrington on a low dose of mexiletine and sees her every three months to monitor her tolerance to the medication and progress in regaining functionality and minimizing her symptoms. He also recommended physical therapy, weight loss (to reduce the amount of fat in the body, which in turn reduces the occurrence of the painful nodules), and psychiatric therapy to help Carrington cope with the emotional and mental side effects of her pain.

“I have been amazed at the disability – psychological as well as physical – and the social impact this uncommon disease causes,” Rastogi says. “Because it is a rare disease, there is a lack of understanding among providers and a lack of standard diagnostic measures and treatment, which further amplifies the distress and disability among these patients.

“With mexiletine, I have seen several patients able to enjoy their normal lives again and re-engage with family and society. This is the best reward.”

Carrington agrees.

“It’s crazy how much more energy I have,” she says. “I used to work during the day, lie down, and get up the next morning and work. That’s all I could do. Now, it’s no big deal if I do the laundry after I’ve worked all day.”

Although she still has bad days, her pain level on most days is about half what it was before, she says. In addition, she has fewer painful nodules of fatty tissue under her skin, and those that do occur aren’t as painful for as long.

She’s happy to concentrate on following her treatment plan — and on how much better she feels.

“You just can’t give up hope,” she says. “I think I had done that for a while. Now I’m just so relieved that I know what’s going on.”

About the Pain Management Clinic

The Pain Management Clinic at University of Iowa Hospitals & Clinics provides multidisciplinary, evidence-based pain treatment and cutting-edge interventional treatments for patients in Iowa and surrounding areas. In addition to board-certified and pain-trained physicians, the clinic staff includes two psychologists, a pharmacist, and pain-trained nurses and medical assistants. The clinic operates two locations: Pomerantz Family Pavilion (Elevator M, Level 4) at UI Hospitals & Clinics, and at UI Health Care–Iowa River Landing in Coralville.

For referrals and consultations, call 800-322-8442 or use our online form.