Ehlers-Danlos Is Common Cause of Intractable Pain
/By Forest Tennant, PNN Columnist
Ehlers-Danlos Syndrome (EDS) is the best known of the hereditary collagen disorders. From birth, persons with EDS are preprogrammed to start dissolving collagen at some location in the body, as it causes a defect in the way collagen is produced or maintained throughout all tissues.
The fine and soft tissues that are the most susceptible to dissolution are found in the joints, ligaments, eyes, spine, gums and intestine. When these tissues deteriorate and begin to dissolve, inflammation, pain and neurologic impairments begin. The tissue may or may not rebuild and usually leaves permanent damage, pain and/or disability.
Collagen deterioration may start in childhood or middle age. An early sign is being double-jointed or extremely flexible.
It is unknown currently what the exact mechanism is, or what precipitating factors such as virus or trauma that initiate this reaction. Regardless, collagen dissolution will move to a new and different locations once the hereditary preprogramming begins.
EDS commonly hits the spinal canal and spine. The first major problem may be a cerebral spinal fluid leak, protrusion of a disc, Tarlov cyst or arachnoiditis. Given its predilection to hit the spine, EDS may produce the complication of Intractable Pain Syndrome (IPS). In fact, it seems to be emerging as the first or second most common cause of IPS.
EDS Screening Test
Our research has found that a high percentage of patients who have EDS don’t know it. If you have developed a spine or pain problem without an injury or other obvious cause, you should be screened for EDS.
This questionnaire was recently published to help screen people for EDS.
Do you have pain in multiple locations?
Do you have extreme fatigue?
Are you clumsy sometimes and fall or walk into objects?
Are some of the joints in your hands, feet, elbow, hips or knees “loose” or quite flexible?
Have you had a lot of sprains or joint dislocations?
Is your skin thin in places?
Are you double-jointed or able to bend your fingers, arms, or ankle backward?
Are your hands and feet cold much of the time?
Do you bruise easily or have bruises that suddenly occur?
Is your skin “stretchy” in some places?
Are you constipated a lot?
Do you suffer from heart burn or frequent episodes of food regurgitation?
If you answered “Yes” to 6 or more of the 12 questions, you should see a doctor and have the diagnosis confirmed by a genetic test or skin biopsy.
If you have EDS or a hereditary collagen disorder, there are foods, supplements and hormones you can take to help restore and rebuild lost tissue. Click here to see them. These tissue building recommendations from the IPS Research and Education Project are meant to complement and supplement your treatment program, but are not a substitute for inflammation and pain control.
Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.
The Tennant Foundation has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.
