Pain Treatment & hEDS/HSD
What Pain Treatments Are hEDS/HSD Patients Actually Using, and Do They Work?
None of us writing this are doctors. This page collects what the published research actually says about pain treatment patterns in hEDS/HSD, so you have something concrete to bring to a doctor.
It is one thing to know that chronic pain is common in hypermobility. It is another to see, in real numbers, what people are actually being prescribed and trying - and how often it falls short.
What hEDS/HSD Patients Are Actually Prescribed and Trying
The same 2023 study of 327 hEDS/HSD patients from an Italian reference center documented treatment patterns directly. Physiotherapy was used by the large majority, especially in hEDS (97.70%) versus HSD (88.89%). On-demand use of NSAIDs or paracetamol was widespread across both groups (85.92%) and often daily. Opioid therapy was notably more common in hEDS specifically: 54.02% of hEDS patients had used opioids, compared to 30.95% of HSD patients.
Beyond first-line pain treatment, 34.20% of patients used benzodiazepines - not only for pain, but for anxiety, panic, and sleep disturbances, more often at older ages. Anti-epileptic drugs typically used for nerve pain (gabapentin and pregabalin) were used by 19.72% of patients, and steroids by 9.86%.
The Uncomfortable Finding: Most of This Doesn't Actually Work
The study's own summary of this data was blunt: physiotherapy and painkillers were ineffective in most patients. That is a striking thing for a study to state directly, and it lines up with what the 'why don't my pain medications work' pattern reported elsewhere on this site actually looks like at scale - not a handful of unlucky cases, but the majority experience in a study of over 300 people.
This does not mean these treatments are worthless or should not be tried - physiotherapy and NSAIDs remain reasonable first steps, and some people clearly do get relief. It does mean that if standard pain management has not worked well for you, you are not an outlier or doing something wrong; this study suggests you are actually the more typical case in this population, which may be useful context when advocating for further evaluation or different approaches rather than more of the same.
What to do with this
If physiotherapy and standard painkillers have not meaningfully helped your pain, this research supports raising that directly with a doctor rather than assuming you need to try harder with the same approach. It may be worth specifically discussing why central sensitization (covered elsewhere on this site) might make standard pain treatments less effective, and whether a referral to a pain specialist or a multidisciplinary approach makes sense given how common treatment-resistant pain appears to be in this population.