This 2022 review by Whalen and Crone looked at what elements from conservative multidisciplinary approach are best to treat musculoskeletal pain in Ehlers-Danlos Syndrome (EDS) patients. The authors identified and analysed research articles that addressed "Pain Mangement + EDS" with the following approaches physiotherapy, occupational therapy, cognitive behavioural therapy and pharmacological interventions. These treatments were suggested based on a previous review by Chopra et al looking at Pain in EDS.
It's highlighted that despite musculoskeletal problems being a hallmark of the hypermobile EDS types there is little information available to health providers through medical databases like UptoDate and Dynamed etc. to help guide treatment for pain. Most of the information was related to helping fibromyalgia pain vs EDS.
Sadly, there was very limited and weak evidence in the literature for these approaches, yet with little else to offer EDS patients these are still what is recommended. 4 articles were found that met the studies search criteria include a review, clinical trial, study on complementary/alternative therapy and finally a qualitative study on pain. Each of these studies found showed limited and weak evidence.
This article reminds us of a systematic review in 2022 that looked at exercise and rehabilitation in EDS that yielded very limited low quality studies too. It's not so much that exercise doesn't help, but there was limited research. The research is important not only for knowing the best type and approach, but also when trying to get funding through NDIS. So more studies on these "accepted" treatments is important for the entire EDS community and health professionals.
Weak studies don't mean these therapies don't work, it could easily mean "we just haven't done the research yet". Exercise and pain rehabilitation in EDS is a major area that many patients hear we have to do. Now we need the research to help back this up and also analyse the specifics that are more helpful. So if any of our exercise and/or physio students or researchers are needing an idea for a study please look into EDS (and other types beyond hEDS only)