Comorbidities of EDS

Comorbidities of EDS | Oh Twist!

As I’ve mentiond numerous times throughout this blog, people with Ehlers-Danlos Syndrome seriously win the bad health lottery when it comes to comorbidities, or conditions you have along with a primary condition.

I think it helps when you remember that collagen runs through 80% of the body, so affects virtually every system.

Lastly, I’ll note that there are often BOTH bio-mechanical (physical, e.g. impinged nerves, muscle tension, herniations, loose ligaments), and bio-chemical (e.g. allergy, MCAD) causes to many of our issues (e.g. headaches, frequent urination) lending to the diagnostic and treatment challenge.  

here is an unofficial list of common and semi-common comorbidities (besides hypermobility)  I’ve observed in the EDS community online:

  • Fibromyalgia
  • Chronic fatigue, often diagnosed as CFS/ME
  • Chronic Pain of ALL kinds, including RSD/CRPS, arachnoiditis, neuropathies, radiculopathy, neuralgia, fibromyalgia, etc. often invisible on scans
  • MCAD (Mastocytosis or the newly recognized Mast Cell Activation Syndrome aka MCAS – ICD-10 code to come soon hopefully in 2014)
  • Fibromuscular dysplasia (deformity of the arteries, especially leading to the kidneys)
  • Mood disorders, especially anxiety and depression (likely organic in origin and/or secondary with ASD)
  • Thyroid issues (high and low, often auto-immune despite normal TSH “levels”)
  • MS and other auto-immune disorders (RA, Sjogren’s, Lupus, Ankylosing Spondylitis, OA, more)  
  • Dysautonomia of all kinds, most notably poor temperature and BP regulation (high or low, see POTS below)
  • Raynaud’s phenomon (blood vessel constriction from cold, stress) pronounced “ray-noe’s”) – a form of dysautonomia
  • POTS (Postural Orthostatic Tachycardia Syndrome) – a subset of dysautonomia involving BP drops and syncope (fainting)
  • Mitochondrial disorders and deficiencies
  • Sensory Processing Disorders

This is just a SMALL sampling of the 4-page list. Check out the whole list at


2 thoughts on “Comorbidities of EDS

    1. Zyp Czyk Post author

      Yes, my mom and I both struggling with incontinence and pelvic prolapses.

      And thanks for mentioning that type of migraine. Now I know weakness on one side is not necessarily a stroke.



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