Unstable joints – Could I have Ehlers-Danlos syndrome?

Q: I’ve been diagnosed with hypermobility syndrome/fibromyalgia and will be tested for Ehlers-Danlos Syndrome. If you are hypermobile do you necessarily have EDS? And what is “prolotherapy” as a treatment for hypermobile joints? Is it safe?

A: You can definitely have joint hypermobility without having Ehlers-Danlos syndrome. It is estimated that 10% to 15% of people have hypermobile joints as children (e.g., ability to bend thumb back to touch wrist, or touch palms to the floor without bending knees), but many improve as they reach adulthood.

Various studies have indicated hypermobility – joints that move beyond the normal range of motion – may be two to three times as frequent among those with ME/CFS and Fibromyalgia, and tend to run in families. Usually it causes no problems, but individuals with hypermobile joints are sometimes more susceptible to injuries such as sprains and dislocations. Physicians use a simple “Beighton Hypermobility Score” to quantify joint laxity.

With hypermobility “syndrome,” symptoms may include pains in joints such as the knees, hips, elbows, or fingers.

Management of problematic hypermobility can start with exercises to strengthen the muscles key to stabilizing the target joints and learn how to prevent hyperextension. But importantly this regimen should be as directed by a trained professional such as a physician specialized in physical medicine, rehab, or sports medicine, to avoid injury to the joints.     

Ehlers-Danlos syndrome, on the other hand, is a relatively rare disorder affecting only about one in 5,000 people. Occasionally when a patient with hypermobile joints presents with joint pain, their doctor may want to evaluate for EDS. It is an hereditary connective tissue disorder characterized by defects in collagen – the tough, fibrous protein in connective tissue that helps support the skin, muscles, ligaments and organs of the body. (See info at MayoClinic.com.)

Prolotherapy is a treatment that injects a dextrose (sugar water) solution into the ligament or tendon where it attaches to the bone. The theory is that this causes a localized inflammation in these weak areas, which then increases the blood supply and flow of nutrients and stimulates the tissue to form new ligament tissue in areas where it has become weak.

Prolotherapy is used for many different types of musculoskeletal pain, including arthritis, back pain, neck pain, fibromyalgia, sports injuries, unresolved whiplash injuries, carpal tunnel syndrome, chronic tendonitis, partially torn tendons, ligaments and cartilage, degenerated or herniated discs, TMJ and sciatica.

While no treatment is without risk, the risks from prolotherapy appear to be minimal when the treatment is administered by a doctor who is an experienced prolotherapy practitioner. Many physicians remain skeptical about the benefits of prolotherapy, largely because research has been limited.

According to a summary of current research and recent journal articles published August 2009 in Sports Medicine, prolotherapy is gaining popularity for musculoskeletal treatment, and though “recent research is supportive, larger quality studies are needed.”  
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* Writer/advocate Karen Lee Richards was one of the founders of the ME/CFS and FM patient movement. She co-founded the National Fibromyalgia Association (NFA) with Lynne Matallana in 1997 and served for years as Executive Editor of Fibromyalgia AWARE, the first glossy magazine dedicated to ‘invisible illnesses’. Karen is now Patient Pain Expert for HealthCentral’s ChronicPainConnection (www.chronicpainconnection.com), and is a long-time contributor on patient issues to ProHealth.com.

Note: This information has not been evaluated by the FDA. It is general and is not intended to replace the attention of a trained medical professional, nor is it intended to prevent, diagnose, treat or cure any condition, illness or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “Unstable joints – Could I have Ehlers-Danlos syndrome?”

  1. MtnDews says:

    Play it safe, go to a qualified geneticist to either rule out, or to diagnose Ehlers Danlos. Some now think that Ehlers Danlos is less rare than once thought and is just under diagnosed. I have found that few doctors know much about Ehlers Danlos.
    While waiting for an appointment with a geneticist, gather family medical history to take with you.
    Check out EDNF.org for more information.
    Hope this helps.
    Helen

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