hEDS patients report less pain with long-term medical cannabis use

About half of those in study see hypermobility pain eased over 2 years

Written by Lila Levinson, PhD |

Five marijuana leaves are seen floating above a variety of medical cannabis products.

Long-term medical cannabis use may help ease pain related to hypermobility for some people with Ehlers-Danlos syndrome (EDS), according to a U.K.-based registry study.

The researchers assessed treatment outcomes among people with extremely flexible joints, including individuals with hypermobile EDS (hEDS), who used medical cannabis for at least two years. About 50% to 60% reported clinically meaningful reductions in pain, depending on the exact metric used. The study also involve people with hypermobility spectrum disorders (HSD), an umbrella term for conditions that cause excessive joint motion.

“In this real-world cohort, [medical cannabis] treatment was associated with sustained improvements in outcomes for individuals with hypermobility-associated chronic pain,” the researchers wrote, noting that the study also found “sustained improvements in … anxiety, and sleep outcomes” for this patient group.

“This represents the largest and longest-duration observational study of medical cannabis therapy specifically in hypermobility spectrum disorders and Ehlers-Danlos syndrome, addressing a critical evidence gap in chronic pain management,” the team wrote.

The study, “UK Medical Cannabis Registry: an updated analysis of clinical outcomes of medicinal cannabis therapy for hypermobility-associated chronic pain,” was published in the journal Clinical Rheumatology.

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EDS is a group of disorders that affect the connective tissue that provides structure to joints, skin, blood vessels, and other tissues and organs. In hEDS, the most common of the EDS types, this results in joints with a wider than normal range of motion, or hypermobility.

Hypermobility can cause chronic pain in bones, muscles, and joints. Several different elements, including nerve damage, contribute to pain in these disorders, making the symptom a difficult one to treat.

“Consequently, effective pharmaceutical options for hypermobility-associated chronic pain are scarce,” the researchers wrote.

Pain treatments in hEDS can cause addiction, side effects

Some people with hypermobility may experience pain relief with nonsteroidal anti-inflammatory drugs or opioids. However, these treatments can cause addiction and a range of side effects. Adjunctive, or add-on, therapies may help some patients dealing with pain.

Medical cannabis is a potential adjunctive therapy that contains compounds that interact with pain signaling pathways throughout the body. Unlike recreational cannabis, the levels of these compounds in medical cannabis are fine-tuned to support clinical goals. In an earlier study, the same research group found that medical cannabis use for as long as 18 months could be effective for pain.

For this study, the team expanded that analysis to a larger group of participants and a longer time frame. Using a U.K. registry of medical cannabis users, the researchers identified 240 people with hEDS or HSD who received medical cannabis for at least two years. The participants’ mean age was about 37.8, and 81% were female.

The precise dosages of the treatments given, including the relative levels of cannabis-derived compounds, varied broadly, the researchers noted.

A variety of patient-reported outcome measures, or PROMs, were examined. The participants completed three questionnaires about pain and two about changes in overall health. They also reported on their anxiety levels and sleep.

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As many as 61% of patients had less pain with medical cannabis

Across all scales used, there was significant improvement over the entire treatment timeframe, according to the researchers.

“[These] findings contribute real-world evidence for the therapeutic potential of [medical cannabis] in HSD/hEDS, shown by sustained improvements across all [outcomes],” the team wrote.

For the pain-specific PROMs, 47% to 61% of participants experienced changes that met thresholds for meaningful clinical effectiveness, the data showed.

[These] findings contribute real-world evidence for the therapeutic potential of [medical cannabis] in HSD/hEDS, shown by sustained improvements across all PROMs.

Certain factors had a significant effect on the probability that a participant would experience a clinically meaningful change. For one pain score, the Brief Pain Inventory short form, having poorer sleep quality at the beginning of the study corresponded with a significantly greater chance of meaningful change. Conversely, having a body mass index — a ratio of weight to height that’s used as a measure of body fat — less than 20 kg/square meters was associated with lower odds of improvement.

During the first two years of treatment, mean opioid dosages declined significantly, the researchers noted. This could suggest a reduced reliance on these medications for pain relief.

As such, “the opioid-sparing potential of [medical cannabis products] supports their use as adjuncts to opioid therapy, reducing adverse effects associated with their high doses,” the team wrote.

Importantly, however, the use of medical cannabis can also cause unwanted side effects. About one-quarter of participants reported such issues, most commonly headaches, fatigue, and lethargy. Most cases were mild or moderate, though some severe or life-threatening events occurred, per the researchers.

Further analysis revealed that being older than 50 increased the risk of side effects by more than 350%. 

Together, the findings indicate that some people with hypermobility may respond to pain treatment with medical cannabis.

Researchers warn against ‘indiscriminate prescription’ of meds

However, the researchers wrote: “These findings should not be interpreted as advocating for indiscriminate prescription of CBMPs in hypermobility-associated chronic pain.” Instead, the team recommended post-prescription monitoring for complications such as sleepiness and fatigue.

Among the study’s limitations, the registry didn’t clearly differentiate between hEDS and HSD, so it wasn’t possible to compare results for the two conditions. Also, participants may have been using nonprescription pain relievers and physical therapy, which were not accounted for.

“The lack of a control or placebo arm means it is not possible to distinguish treatment effects from placebo-related or natural changes in pain severity,” the team added.

Future clinical trials with a randomized design are warranted to better assess the effects of medical cannabis on hypermobility pain, according to the investigators.

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