Hypermobility/hEDS Resources

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) have become increasingly more acknowledged as a significant cause of chronic pain and disability and often are accompanied by other complex chronic illnesses. These two conditions are differentiated based on diagnostic criteria. 

 

Symptoms of hEDS and HSD

  • hEDS - joint hypermobility, frequent joint dislocation, stretchy or “velvety” skin, chronic pain in bones and muscles, osteoporosis, osteoarthritis, GI issues, heart and blood vessel issues and health problems including menstrual and pregnancy complications. There is also a higher rate of issues such as disc herniation and other syndromes such as postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS) and frequent migraines. 

  • HSD - has joint hypermobility and many of the other features of hEDS but does not meet the criteria for hEDS, may be accompanied by some of the many symptoms those with the diagnosis of hEDS experience

 

Both of these conditions have both joint hypermobility and symptoms of pain or other symptoms that interfere with daily life. 

 

What should I do for my pain/symptoms/etc? 

 

Every person’s presentation/symptoms are different and therefore may need different forms of care and treatment. Most treatments for symptoms of pain are symptom-based and often various devices or types of therapies. 

 

Physical therapy is a cornerstone of hEDS/HSD care and pain management - it is essential for preventing repeated dislocation and helping address pain breakthroughs. This is because connective tissue that makes up ligaments that normally help maintain the structure of the joints is less effective, and the muscles end up having to do the work of these ligaments instead. Having a regular PT regimen and maintaining a strong core muscle group can protect areas especially affected over time such as the back and shoulders. Additionally, pelvic floor therapy (PFT) can also be immensely helpful for addressing the common issues affecting the bladder, constipation, vaginal pain or incontinence in hypermobile patients. 

 

Manual therapies such as osteopathic manipulative therapy (OMT), massage, acupuncture and other forms of bodywork can be very helpful. Those with joint hypermobility should be extra-cautious about getting their joints “cracked” as there is a higher likelihood of the joint being misaligned and pain relief being minimal and short-lived. I do not EVER recommend allowing high-velocity techniques on the neck/upper neck as hEDS can lead to increased risk of vertebral artery rupture (the blood vessels in the back of the neck). 

 

Items that can help: 

Some recommendations I use or have heard others utilize, varying levels of expense

  • Finger splints: 

    • Oval-8 Finger Splints: LINK

    • Bespoke metal finger splints (various on Etsy) 

  • Wrist compression brace: LINK

  • Knee compression brace: LINK

  • Electrical Heat Pad: 

  • Cold Packs: LINK

  • Medical Corsets/Posture Harnesses/Body Harnesses: 

  • Mobility Aids → variable, dependent on what your needs are 

 

Much of the information contained here comes from the Ehlers-Danlos Society which provides a wide array of helpful information for patients, loved ones and healthcare professionals, in addition to my medical attending Denise Burns DO, FAAO. I also want to say thank you to the “disability doulas” in my life who directed me toward the many resources they utilize.