A complicated disorder, Ehlers Danlos Syndrome (EDS) can cause pain, inflammation and muscle spasms, among other unpleasant symptoms. Some patients report that cannabis has been useful in helping manage these symptoms.
What is Ehlers Danlos Syndrome?
Ehlers Danlos Syndrome (EDS) is a group of inherited disorders of the connective tissue whose hallmark symptoms are overly flexible joints, chronic pain, and stretchy, fragile skin. A multi-systemic disorder, some of the many symptoms of EDS include chronic joint and muscle pain, early onset spine and joint degeneration, joint dislocations, migraines, and gastrointestinal issues; to name a few.
The symptoms of EDS are often treated by numerous physicians with a multi-systemic and multi-disciplinary approach. Most who suffer from the pain of EDS, especially the hypermobile type, have to take medications for pain, inflammation, and muscle spasms; often with little effect and side effects such as constipation, sleepiness, dry mouth, mental fogginess, etc. Many of those with EDS also take medication to control allergic reactions, poor GI motility, sleep disturbances, and both depression and anxiety. All of which carry their own side effect profile.
How Might Cannabis Help Patients with Ehlers Danlos Syndrome?
Cannabis may help many with EDS who contend with debilitating pain and inflammation via activating the internal endocannabinoid system (ECS). The ECS comprises a vast network of chemical signals and cellular receptors which are found throughout our brains and bodies that work like a lock and a key when cannabinoids (CBD, THC, etc) are introduced. As cannabinoids help with sleep, pain, inflammation, anxiety, depression, PTSD, gastrointestinal complaints, etc; there is budding evidence that adding a cannabis regimen as an adjunct to the medication regimen of a person with EDS, or replacing certain medications as medically advised, is attractive when medications seem to fail or produce undesirable side effects.
A Cannabinoid Physician Weighs In
Dr. James Weeks, a cannabinoid physician with One Heart Medical in Cincinnati, Ohio stated that it’s important to keep in mind that when dealing with complex, multi-systemic conditions (such as EDS), that using multiple modalities for relief is key. Sometimes it takes medications, pain management procedures, and cannabis therapy to achieve a better quality of life, he said.
How Is Cannabis Perceived in the EDS Community?
As their quality of life can be severely impaired, EDS patients often find themselves on a cocktail of prescription medications. However, cannabis is finding its footing in the EDS community as a safer and more effective way to manage the myriad of complex symptoms. In data published in the American Journal of Medical Genetics, 37 percent of the 500 EDS patients surveyed reported they used cannabis medicinally. Furthermore, of both the traditional and complementary therapies used by respondents, “marijuana was self-rated as most effective.” A 2018 survey of 984 chronic pain patients using medical marijuana supported these results. Upon asking how effective cannabis was at alleviating the participants’ symptoms, the average score reported was 74.7 percent.
My Experience as an Ehlers Danlos Syndrome Patient
In my personal case, since I have so many conditions associated with my particular hypermobile EDS, I work with my cannabis doctor to isolate some specific symptoms such as chronic pain, inflammation, muscle spasms, depression, anxiety, and PTSD. To help manage these symptoms with cannabis therapy, we use a megadose of CBD (approximately 120 mg) each day via tincture and gummies and THC rich flower and oils toward the evening or when my pain is higher.
Like the handful of those I interviewed with EDS who use cannabis therapy, most of us seem to microdose. Some ways that we medicate are via tinctures, gummies, and a sativa-leaning or hybrid vape pen during the day (for therapeutic value and convenience) and a THC-heavy indica flower, oils, or edibles in the evening to target pain, relaxation, and sleep.
One EDS cannabis user told me she stopped using alcohol to treat her related pain and anxiety by switching to cannabis and she said it made such a difference in her quality of life on many levels. Another patient stated she was able to wean off of opiates and muscle relaxers by using cannabis products.
The only complaint I have heard regarding cannabis use and EDS, given that many of those with EDS cannot work and are on disability, is cost. In many cases, cannabis products are helpful but quite cost prohibitive.
Resources for Support
There are a few resources for cannabis users with Ehlers Danlos Syndrome:
- There is a Facebook group called EDS:A Joint Effort for Ehlers-Danlos Syndrome Patients to come together to openly ask questions, post information and discuss cannabis use for pain relief, healing, alternative herbal treatments, etc.
- A Powerpoint on Ehlers-Danlos Syndrome and Medical Marijuana presented by Ellen Lenox Smith (presented at The Ehlers-Danlos Society 2017 Global Learning Conference).
- There is a newer book by Diana Jovin called Disjointed: Navigating the Diagnosis and Management of Hypermobile EDS and Hypermobility Spectrum Disorders that contains a section on medical cannabis for those with EDS.
None of these points should be construed as medical advice. If you or a loved one has Ehlers Danlos Syndrome, be sure to talk with your EDS medical care team before starting on a cannabis regimen.
Ehlers Danlos Syndrome is not directly a qualifying condition for medical marijuana in Ohio, but EDS patients with chronic pain or other qualifying conditions often can be approved.
Want to share your patient story with MedicateOH? Reach out to us at medicateOH@gmail.com.