How to Deal with Chronic Pain When You Have EDS

How to Deal with Chronic Pain When You Have EDS
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If you have Ehlers-Danlos syndrome (EDS), you likely experience chronic pain that can be severe on occasion. The pain may be widespread or limited to one area of your body.

Here is some information about the pain caused by EDS, and ways to help manage it.

What is EDS?

EDS refers to a group of genetic disorders that affect the connective tissues, which provide structure to joints, skin, blood vessels, and other tissues and organs. Depending on the type of EDS you have, symptoms can range from loose joints to life-threatening complications.

Where does it hurt?

At least 90 percent of EDS patients experience chronic pain that can include:

  • Frequent headaches
  • Abdominal pain
  • Joint pain. (Any of the joints can hurt, and sometimes multiple joints hurt simultaneously.)
  • Pain in the face or jaw
  • Nerve pain
  • Arthritis
  • Back pain
  • Neck pain
  • Pain when completing daily tasks, such as holding a pen or pencil
  • Generalized, bodywide pain
  • Pain from previous surgery

Ways to help manage chronic pain

Sufficient research to authoritatively guide how EDS pain should be managed is still lacking. But recommended approaches can include:

Pain management can focus on treating the cause of the pain, such as joints coming out of position. To establish a long-term plan for pain management, consider consulting a multidisciplinary healthcare team. This team might include a pain physician who is well-versed in EDS, a nurse, a kinesiologist, and a pain psychologist.

Contact an EDS patient organization, such as the Ehlers-Danlos Society, for support groups that can share their experiences with pain management.

 

Last updated: May 13, 2020

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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