Raise your hand if you have EDS or HSD and have persistent pain!
That’s gonna be a lot of hands.
Not everyone with Ehlers-Danlos Syndromes or Hypermobility Spectrum Disorders has persistent pain. In many cases, sources of pain can be treated and controlled so quality of life is improved. In other cases, pain is not an issue at all which is FANTASTIC!
However, EDS and HSD are complex conditions which impact every system of the body. They also cause pain via numerous mechanisms and can impact every part of the body. The list is exhaustive! For headache alone, there are more than 20 causes of pain in people with EDS or HSD!
The word “benign” has very appropriately been removed from hypermobility disorder related nosology. Some providers, however are unfortunately still using the old diagnostic term “Benign Joint Hypermobility Syndrome” and sometimes made up ones like "Benign hypermobile EDS". BJHS is SO out of date and is horribly misleading! The cells may not be malignant, but like cancer, EDS and HSD can affect every bodily system. NOT benign indeed!
Quality of life can be impacted further by comorbid conditions like dysautonomia. Some studies have found severe impairments with autonomic nervous system disorders comparable to other chronic, disabling conditions like CHF (congestive heart failure). For more myths about EDS and related disorders, see page 37 of Disjointed - Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.
To learn more about pain in EDS / HSD and treatment options, read the section of Disjointed “Pain, Fatigue, Sleep and Diet”.
EDS and HSD Awareness Month may be over but the Bendy Bodies educational efforts will continue and we have some exciting announcements coming in June so stay tuned!
For all the latest updates, subscribe to the YouTube Channel, the Bendy Bodies Podcast and the Hypermobility MD community.
References:
https://pubmed.ncbi.nlm.nih.gov/20579833/
https://pubmed.ncbi.nlm.nih.gov/25880527/
https://www.mayoclinicproceedings.org/article/S0025-6196(11)61995-2/abstract