At a glance:
- Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders. Hypermobile Ehlers-Danlos syndrome (hEDS) is the most common type and commonly causes chronic pain, joint instability, fatigue and reduced quality of life.
- Some people with similar symptoms are diagnosed with hypermobility spectrum disorders (HSD). Although HSD is a separate diagnosis, both conditions can cause chronic pain and are managed in similar ways.
- Standard treatments for hEDS include physiotherapy, pain management, psychological support and lifestyle changes, but many people continue to experience persistent symptoms. Medical cannabis may be prescribed when these treatments have not provided enough relief.
- Research into medical cannabis specifically for hEDS remains limited. However, data from the UK Medical Cannabis Registry, which includes patients with both hEDS and HSD, is helping improve our understanding of cannabis-based medicines for hypermobility-associated chronic pain.
Understanding Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders that affect the body’s collagen, resulting in joint hypermobility. Hypermobile Ehlers-Danlos syndrome (hEDS) is the most common subtype and is characterised by generalised joint hypermobility, chronic musculoskeletal pain, joint instability, recurrent injuries, fatigue, and, in some individuals, mild skin hyperextensibility. Although the exact genetic cause of hEDS has not yet been identified, the condition can have a significant impact on daily functioning and quality of life.
Some people with similar symptoms are diagnosed with hypermobility spectrum disorders (HSD) rather than hEDS. Although HSD is a separate diagnosis, both conditions can cause chronic pain, fatigue and joint instability.
Persistent pain is one of the most common and disabling symptoms experienced by people with hEDS and is one of the main reasons they seek medical care. This pain can be complex and may be caused by several different factors, making it difficult to treat.
Challenges in Managing Chronic Pain in Hypermobile Ehlers-Danlos Syndrome
The mechanisms underlying pain in hEDS remain relatively under-researched, making effective treatment challenging to achieve.
Despite conventional approaches, many patients continue to experience pain that significantly limits their functionality and negatively impacts their mental, physical, and social wellbeing. There is a clear need to explore additional options for managing chronic pain associated with hEDS more effectively.
How Might Medical Cannabis Help Ehlers-Danlos Syndrome Pain?
Medical cannabis may help some people with hEDS manage chronic pain by reducing pain intensity and improving symptoms that often accompany long-term pain, such as poor sleep.
Chronic pain is the most common reason patients are prescribed medical cannabis at Curaleaf Clinic and one of the most widely studied uses of cannabis-based medicines. However, research specifically in people with hEDS remains limited. [1]
CBD and THC for Ehlers-Danlos Syndrome Pain
Cannabinoids, including THC and CBD, interact with the body’s endocannabinoid system (ECS), which helps regulate pain, mood, sleep and inflammation. Researchers believe this interaction may help regulate pain signalling, although exactly how this works in people with hEDS is not yet fully understood.
Ehlers-Danlos Syndrome Treatments
There isn’t a single treatment for Ehlers-Danlos syndrome. Instead, treatment focuses on managing symptoms and helping people stay as active and independent as possible.
This may include physiotherapy to improve muscle strength and joint stability while reducing pain and the risk of injury. Other treatments may include occupational therapy, pain management using medicines and other approaches, psychological support to help people cope with chronic pain and fatigue, and lifestyle changes such as low-impact exercise, activity pacing and improving sleep.
Treatment is tailored to each individual, reflecting the wide variation in symptoms and how severely people are affected.
Can I be Prescribed Medical Cannabis for Ehlers-Danlos Syndrome?
Medical cannabis may be considered for people with Ehlers-Danlos syndrome if other treatments haven’t provided enough relief or have caused unwanted side effects.
NHS access for this purpose is very limited, so most people who receive medical cannabis treatment for Ehlers-Danlos syndrome do so through private clinics. In the UK, only specialist doctors on the GMC’s Specialist Register can initiate treatment with medical cannabis.
If you’re exploring whether medical cannabis is right for you, you can complete an initial eligibility assessment with Curaleaf Clinic. The team will review your health and specialist records and, if appropriate, invite you to meet with a pain consultant to determine whether medical cannabis may be an appropriate part of your care plan.
Real-World Evidence: The UK Medical Cannabis Registry
In 2019, Curaleaf Clinic (formerly Sapphire Medical Clinic) established the UK Medical Cannabis Registry to collect information about how patients prescribed medical cannabis respond to treatment over time.
Researchers have since analysed Registry data from people with hypermobility-associated chronic pain, including those with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD), looking at changes in pain, quality of life, sleep and anxiety, as well as how well treatment was tolerated.
What the Registry Data Shows
The study assessed patient-reported outcome measures (PROMs) at baseline and multiple follow-up points (1, 3, 6, 12, and 18 months). These measures included:
- Pain: Changes were observed in perceived pain severity and interference in a proportion of participants across all follow-up points.
- Health-Related Quality of Life: Patients reported a change in mobility, anxiety, and depression levels between baseline and all subsequent periods as measured by the EQ-5D-5L.
- Other Quality of Life measures: Changes in sleep quality were also noted.
- Adverse Events: A total of 50 patients reported one or more adverse events, primarily moderate in severity, with headache, fatigue, and lethargy being the most common.
Research Limitations and Future Directions
It’s essential to understand that the registry’s observational design cannot establish a causal relationship between medical cannabis treatment and the reported outcomes. The findings indicate its potential for some patients with hypermobility-related pain, but further research is needed to fully understand the role of cannabis-based medicines in managing hEDS.
Contributing to Medical Cannabis Research
Patients who participate in the UK Medical Cannabis Registry play a valuable role. Their involvement helps advance our understanding of cannabis-based medicines across various conditions, including hypermobility-associated chronic pain. Initiatives like the UK Medical Cannabis Registry play a vital role in improving patient care and informing future clinical guidelines for medical cannabis in the UK.
This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional regarding treatment options for your specific condition.
References
[1] Sarah Sinclair, https://www.ehlers-danlos.org/information/the-role-of-medical-cannabis-in-eds/
