POTSDAM -- Perhaps the only thing more frustrating than having chronic pain is experiencing it and being told there's nothing wrong with you.

According to Clarkson University associate professor of physical therapy Leslie Russek that situation is changing for people who suffer from joint hypermobility syndrome/hypermobile Ehlers Danlos Syndrome (hEDS).

“I consider my primary research area to be joint hypermobility syndrome, which is very poorly recognized in the United States. There's little published in medical journals here compared to in Europe. It's my lifelong interest to treat these people,” she said.

Russek, who also treats people with hEDS from all over the country, may be the first physical therapist in the United States to publish on this topic.

This condition is most noticeable in the connective tissue of joints and skin; people have extra-flexible joints that often sprain or dislocate, and skin doesn’t heal properly. But hEDS can also lead to chronic pain through joint, muscle or nerve problems. More surprising symptoms include sleep disturbance, fatigue, poor coordination, frequent infections, gastrointestinal problems, even anxiety disorder.

“People are born with this and the pain sometimes starts in childhood," Russek said. "We can't make them less hypermobile, but we can teach them how to take care of their bodies to avoid pain and tissue damage. We can help them keep strong muscles to support their joints, to develop better coordination, and show them how to use braces or splints. Physical therapy is the key to managing this condition.”

Toward that end, she is one of just a few physical therapists or physicians leading the charge for awareness. She was part of an international team developing evidence-based guidelines for physical therapy management of hEDS -- these guidelines were published in March. Russek has also presented on physical therapy management of hEDS at regional and national conferences.

“The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome” by Raoul H.H. Engelbert, Birgit Juul-Kristensen, Verity Pacey, Inge de Wandele, Sandy Smeenk, Nicoleta Woinarosky, Stephanie Sabo, Mark C. Scheper, Leslie Russek, and Jane V. Simmonds was published in the March 2017 issue of American Journal of Medical Genetics.

Russek has three more recent publications dealing with chronic pain that came from her 2014-2015 sabbatical in Australia, working at one of the best pain research groups in the world.

“Chronic pain is fascinating because the brain can adapt in bad ways that make you more likely to experience pain. We're just starting to understand how the brain changes and we need to learn how to change it back to relieve pain,” she said. “And, it looks like exercise may be the most powerful pain ‘medicine’ we have – and physical therapists are experts at using exercise to treat pain.”

As a result of her studies Down Under, Russek contributed to a review of literature on how to predict which people suffering from acute low back pain will develop chronic low back pain. Unfortunately, the work found that current diagnostic tools for this are not yet very good at predicting who is most at risk.

Two other publications looked at whether pain could become a conditioned response to non-painful stimuli, like Pavlov’s dogs salivating when they hear a bell and expect food. Researchers and clinicians currently believe pain can be conditioned, but it has been extremely difficult to prove, one way or the other. The work that was recently published didn’t help, as one study found that pain was increased when paired with a non-painful stimulus, and the other found that it was not.

Russek’s other recent articles from the past six months are titled "Can screening instruments accurately determine poor outcome risk in adults with recent onset low back pain? A systematic review and meta-analysis," "Classical Conditioning Fails to Elicit Allodynia in an Experimental Study with Healthy Humans," and "Pain by association? Experimental modulation of human pain thresholds using classical conditioning."

Russek joined the faculty at Clarkson in 1997. She was the first faculty member hired in the physical therapy department, where she teaches a variety of courses, including physiology and kinesiology. Her clinical area is orthopedics including joints and headaches, with chronic pain and hypermobility as her specialty areas.

“I treat patients through Canton-Potsdam Hospital. It's a win-win relationship because they get access to my expertise and I have an area to treat patients. It's good for Clarkson as well, to have faculty who are practicing clinicians,” she noted. "Students appreciate when you relate classroom activities to a patient you saw earlier in the week.”