Benign Hypermobility Syndrome—Not so “Benign” After All

Benign Hypermobility Syndrome is a recognized disorder. It even has its own ICD-10 code–***** The problem is that labeling Hypermobility Spectrum Disorder as “benign” is inaccurate, because this disorder, a member of the Ehlers-Danlos family of connective tissue disorders, is frequently associated with joint pain, fatigue due to “mild” sleep disordered breathing, blood pressure regulation (POTS), gastrointestinal issues like Irritable Bowel syndrome, headache, Hashimoto’s thyroiditis, and Pseudotumor or Idiopathic Intracranial Hypertension. (ref) In addition, sometimes endometriosis and polycystic ovarian syndrome can be related to this disorder.

Also, labeling this disorder as “Benign” allows many insurance companies to deny payment for tests designed to get to the root cause of many of the symptoms related to this disorder. If it’s “benign,” it can’t cause any problems so why should they cover it. The problem is that many of the symptoms listed above can be disabling to patients—especially headache, neck and joint pain, and fatigue. Since the body’s immune system is frequently compromised in this disorder, it may play a role in Hashimoto’s Thyroiditis, Rheumatoid Arthritis, Sjogren’s Syndrome, Lupus Erythematosus, and other autoimmune conditions.

This disorder formerly belonged to clinical geneticists. However, it is a lot easier these days to find a gene that links to some disorder, than to find out exactly what that gene does, or even its importance to the quality of life of patients who have it. And except for some relatively rare exceptions, labeling something as a “genetic disorder” stops the thinking process about trying to help change the outcome of that disorder for patients.

Since it turns out that so many patients with Hypermobility Spectrum Disorder have autoimmune-related problems, it only stands to reason that patients should take steps to try to decrease unnecessary stimulation of their immune system. And since the immune system is frequently stimulated by bacteria and food getting through a “leaky gut”, it stands to reason that a diet based on an Autoimmune Protocol Diet (pretty restrictive, but gluten and milk-products free as well as hormone and antibiotic free) might help patients with this disorder. That, and avoiding overstretching their joints, treating their “mild” sleep disordered breathing, avoiding unnecessary drugs and surgery, replacing choline and other dietary deficiencies with appropriate supplements, and treating other problems associated with this “benign” condition as they come up (problems with blood vessels” is a logical way to approach Hypermobility Spectrum Disorder.

But frequently no one listens to these patients, shuffling them from doctor to doctor as psychosomatic, symptom amplifiers, cooks, or worse. They can be teenagers who are referred to psychiatrists, twenty-or-thirty-or-forty somethings who are labeled “depressed.” Frequently they are treated with unnecessary surgery and prescription drugs.

But these patients need to be their own “Squeaky Wheels.” They need to know there is hope for them, and while medicine does not have all the answers at this time for them, we are working on it, now that we know what to look for. There’s light at the end of the tunnel, and it is not a train.

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