News & Events

What Pain Feels LIke for Someone With Ehlers-Danlos Syndrome

Cincinnati Children’s Blog

By:Kenneth Goldschneider, MD, FAAP on August 8, 2013

You might have seen Hallie’s edition of Tell Me a Story. Her journey with pain as a patient withEhlers-Danlos Syndrome (EDS) is familiar to us now, but several years ago, we had not recognized just how often EDS, a hereditary cause of hypermobility, was a cause of pain.  In fact, I recall reading a journal article in the 1990s that said hypermobility was not a cause of pain.

But it is. We’ve learned a lot since then.   Several years ago we began to notice that patients came to our Pain Clinic with a variety of different pains. We listened as they told their stories and noticed that many of them were hypermobile, or “bendy.” We started to see a connection: pain was associated with EDS way more than we ever knew.  It was starting early with these patients, sometimes before adolescence, and really seemed to pick up once a person goes through the hormonal and physical changes of puberty.

While the specific pain can vary from person to person, we have determined some patterns.  Here are the kinds of pain that someone with EDS might feel:

  1. Pain in the joints. Any of the joints can hurt, and often more than one does.
  2. Pain in the back
  3. Pain in the abdomen
  4. Frequent headaches
  5. Pain with daily tasks. People with EDS can have trouble using pens and pencils, because holding tightly to something so thin becomes painful.
  6. Dislocation of joints. Participating in sports or aggressive activities can sometimes lead to a dislocation injury.
  7. Pain all over. Fibromyalgia and Complex Regional Pain Syndrome, a type of severe localized pain, are common symptoms in patients with EDS.

With all of the above symptoms of pain, how does someone with EDS get relief?  We have found several effective treatments for pain relief, but physical therapy (PT) is the most important intervention. The right kind of PT emphasizes “proprioception,” which is the sense of where one’s joints are in space. Patients with EDS lose some of the sense of where their joints shouldbe, which causes misalignment.  And this is a large factor in their pain. Aquatic therapy can be another great way to go, if PT on land is too hard to start with.

Here are other ways we have found to relieve pain associated with Ehlers-Danlos Syndrome:

  1. Work with a pain psychologist. He or she can provide excellent interventions for chronic pain. The idea is to harness the brain to help control the pain and to figure out ways to have a good life in spite of pain. This is extremely important.
  2. Acupuncture can be helpful for some people.
  3. Meditation and gentler martial arts such as Tai Chi can sometimes combine the strength of the mind and the body to bring some relief.
  4. Yoga is often used as a good mind-body therapy. But be cautious. For people with EDS, speak with the instructor and watch a class or two to see if the positions used are okay for your joints.
  5. Medications can help, but cannot change the joints, only lessen the symptoms.  No medication can take the place of proper PT, OT, and psychological therapies:
    1. A fast acting, short-lasting pain medication can be helpful during a painful dislocation.
    2. A muscle relaxant to help reduce muscle spasm after a dislocation can help get the joint back into position.
    3. Some anti-seizure and antidepressants can help with widespread pain, or nerve-related pain

Many patients with EDS come to us feeling resigned to their pain.  They have had it for so long that they feel like it is something they just have to live with. But the reality is that we have found quite a few methodologies that can offer relief. They may not offer 100% reduction in pain, but these treatment approaches help patients get back to their daily lives and tasks. We’re thankful for our patients who have taught us so much along the way.  In turn, we are happy to help other doctors, therapists, and patients with EDS learn more. Be well.

Editor’s note:  we hosted a live event in August 2013, in which Drs. Goldschneider and Neilson answered questions from families related to Pain Management for Children with Ehlers-Danlos syndrome.  You can watch the recording on YouTube

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