Medical Cannabis for Ehlers-Danlos Syndrome [Is It Effective?]
Ehlers-Danlos syndrome is a rare genetic condition that affects the way the body produces or processes collagen. It can cause a variety of symptoms ranging from joint hypermobility to life-threatening organ ruptures. However, one of the most common problems for people with Ehlers-Danlos is chronic pain.
For patients wishing to avoid opioid painkillers, medical marijuana may seem like a safer alternative. But how effective is cannabis for Ehlers-Danlos syndrome? Read on to find out.
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) affects approximately 1 in 5000 people globally. It is an inherited disorder that causes the body to produce or process collagen abnormally.
Collagen is the protein responsible for giving strength and structure to the connective tissue.
It is a vital component of joints, ligaments, tendons, and skin. It also helps to form organs’ internal walls, including the blood vessels and digestive tract.
Therefore, people with EDS may have symptoms that affect any of these structures.
There are at least 13 forms of EDS. Each has distinctive characteristics, but there is also a degree of overlap in their clinical features. Some of the most common EDS symptoms include:
- Joint hypermobility
- Frequent full or partial dislocations
- Chronic pain
- Early-onset osteoarthritis
- Soft, fragile, loose, or elastic skin
- Bruising easily
- Increased risk of organ or blood vessel ruptures
- Increased risk of prolapses or hernias
- Cardiovascular disorders
- Menstrual disorders
- Increased risk of complications during pregnancy
Some forms of EDS can reduce life expectancy, usually due to cardiovascular complications. However, other types are less dangerous, and many people with EDS can live long, although somewhat restricted lives.
What Causes Ehlers-Danlos Syndrome?
EDS develops due to inherited mutations in the genes responsible for collagen production.
Some forms of EDS follow an autosomal recessive pattern, meaning that both parents must carry the genetic mutations to pass them on. However, other types follow an autosomal dominant pattern and can be inherited from just one parent.
Traditional Ehlers-Danlos Treatments
There is no cure for EDS. Therefore, treatment aims to manage symptoms and reduce complications. Some of the most common treatments for EDS include:
- Pain management, including opioid painkillers
- Physical therapy
- Assistive devices, such as mobility aids
- Frequent cardiovascular workups
- Psychological support
In some instances, surgery may be necessary. However, some types of EDS can increase the risk of complications such as bleeding, healing issues, and post-surgical hernias.
Due to the limited treatment options for EDS, some patients are turning to medical cannabis. But how does it help, and is it actually effective? Let’s take a look.
Medical Cannabis for Ehlers-Danlos Syndrome
There is currently no research specifically on cannabis for Ehlers-Danlos syndrome. However, many studies support its use for chronic pain.
For example, a small 2002 study found that 12/15 participants experienced improvements in pain and mood with a low dose of smoked cannabis. Furthermore, 11/15 participants reported improvements in sleep.
A 2018 survey of 984 medical marijuana patients with chronic pain supported these results. When the survey asked how effectively cannabis relieved the participants’ symptoms, the average score was 74.7%.
There are also many anecdotal reports suggesting medical cannabis could benefit patients with Ehlers-Danlos syndrome. One example, highlighted by the medical journal The Lancet, discusses the case of a British woman named Lucy Stafford.
By age 19, Stafford had already received many treatments for EDS, including the potent opioid fentanyl. She had undergone numerous surgeries and addiction to the painkiller tramadol. However, it was only when she began using medical cannabis that her pain became manageable.
Other reports claim that cannabis helps with cramps and spasms and “offers relief no pharmaceutical can.”
Despite the potential benefits, no states currently list EDS as a qualifying condition for medical marijuana. However, several states do permit it as a treatment for chronic, severe, or intractable pain.
THC vs. CBD for Ehlers-Danlos Syndrome
To date, most of the research on cannabis for chronic pain has focused on tetrahydrocannabinol (THC). This is the compound responsible for cannabis’ intoxicating effects. It also provides a series of potential benefits, including muscle relaxation and pain relief.
THC induces these effects by binding with cell receptors known as CB1 receptors in the brain and nervous system. These receptors are designed to interact with chemicals called endocannabinoids that our bodies naturally produce.
THC has a similar molecular shape to these compounds. Therefore, it can influence their receptors and mimic their effects. In fact, THC binds with CB1 receptors even more fully than our endocannabinoids, which is why its effects are so potent.
In recent years, scientists have become more interested in a different cannabis compound, cannabidiol (CBD).
Unlike THC, it does not bind directly with CB1 receptors. Instead, it affects the body by increasing the activity of our endocannabinoids. Therefore, it does not cause intoxication or other THC side effects, such as dizziness or paranoia.
Furthermore, it is possible to extract CBD from industrial hemp as well as marijuana. This fact means that it is far more widely available than THC, even in many states without medical cannabis laws.
Like THC, CBD could possibly offer some relief to patients with pain due to EDS. A 2019 study followed 97 patients with chronic pain for eight weeks while supplementing their treatment regime with CBD. At the end of the study period, 53% of the participants had reduced or stopped their opioid medication. Moreover, 94% of the participants reported improved quality of life.
Therefore, CBD could provide a viable alternative to THC for patients without access to medical marijuana. It is also an option for those who simply wish to avoid intoxication or impairment.
Best Strains for Ehlers-Danlos Syndrome
When it comes to the best strains for Ehlers-Danlos syndrome, there is no evidence that one is better than another. However, many people choose indica-dominant strains for chronic pain conditions due to their more body-focused effects.
Some popular examples include:
(100% indica, 20% THC) (90% indica, 18.5% THC) (60% indica, 22.5% THC)
The downside of these strains is that they tend to cause relaxation and drowsiness. Therefore, they are potentially more suitable for evening use. For those wishing to remain functional during the day, a high CBD or 1:1 CBD to THC strain might be a better option.
Some popular CBD strains include:
(70% indica, 13.5% CBD, 13.5% THC) (50% indica, 12% CBD, 7% THC) (50% indica, 20% CBD, 0.85%THC)
Once again, no research supports these being the best cannabis strains for Ehlers-Danlos. What works well for one person may be less effective for another, and it is often a matter of trial and error.
For those without access to legal, medical cannabis, high-quality, hemp-derived CBD products may be another option. Look for a brand that provides third-party lab reports and has plenty of positive reviews.
For more on choosing a CBD product, see our article: The Best CBD Products Currently on the Market.
Final Thoughts on Medical Cannabis for Ehlers-Danlos Syndrome
There is currently no research specifically on cannabis for EDS. However, there is evidence that both THC and CBD could help with one of its main symptoms, chronic pain.
Anyone wishing to try cannabis for Ehlers-Danlos syndrome should seek advice from a knowledgeable physician to ensure it is suitable for them.
Cannabis has given me the most incredible and unexpected year of my life
Teenager Lucy Stafford, who has Ehlers Danlos syndrome, says her life changed for the better after self-medicating with cannabis.
Thursday 7 November 2019 18:17, UK
Lucy Stafford has been in extreme pain and has had numerous surgeries to combat the debilitating effects of a rare medical condition.
Since paying privately for the drug, at a cost of £800 a month, her pain has reduced so much that she has stopped other treatments and started university. Here, she writes about how medical cannabis changed her life for the better.
I have a genetic connective tissue disorder called Ehlers Danlos syndrome, which basically means by body cannot produce collagen correctly.
The connective tissues in my joints and my stomach and my bladder – and all of my internal organs – are much more hyper-mobile and flexible than they should be, making them not very good at functioning and extremely painful.
As part of my condition, I dislocate my joints very easily without trauma. So I can dislocate my shoulder by brushing my hair, or dislocate my hip by rolling over in bed – causing a huge amount of pain.
Since I was around 10 years old I’ve had a range of different surgeries, injections and treatments to try and manage the different aspects of my condition, because it affects so much of my body.
From the age of 13 I was prescribed opiates, and I basically took opiates every single day because my pain was so debilitating.
More on Cannabis
‘Europe’s biggest cannabis farm’ in rural Spain worth over £83m raided by police
Thailand first Asian country to move to decriminalise marijuana – giving people green light to grow it at home
Medicinal cannabis: Campaigners call on Health Secretary after claiming people ‘blocked’ from accessing treatment three years after law change
But the opiates caused horrendous side effects and made my body become dependent on them.
When I was first prescribed opiates I didn’t even know they were addictive or that your body developed this dependence on them.
But when I stopped taking them after many years I became very, very ill, and they did very little to manage the pain I was in initially while causing the horrendous side effects.
This lead to me dropping out of school when I was 15; I really struggled with my education.
I ended up being tube-fed for three years from the age of 16 because I was so unwell.
I was left with no hope for the future, getting any type of education or living a life.
I could barely get out and see my friends because I was in such unimaginable pain – even while taking all of these ridiculous painkillers that weren’t effective.
Last year, I dislocated my jaw. I dislocate my joints very regularly as part of my condition, but my jaw, for whatever reason, dislocated and went into spasm.
I had surgeries, all sorts of drugs and basically anything my doctors could do for me to try and get my jaw back into the correct position, but it was just stuck.
I cannot even explain what a low point I was at in my life. There was no way out.
Then my doctor tried to prescribe me a cannabis-based medicinal product. He didn’t know much about it as a medicine, but couldn’t increase my doses of fentanyl any more.
So he didn’t really have much of a choice. And so he tried it but it got denied funding immediately – as all NHS cannabis prescriptions generally do.
I was at such a point of desperation I medicated with illegal cannabis and it made such a massive difference to my quality of life.
I pretty much straight away realised that all the medication I had been taking for years and years had been doing basically nothing – and I came off all of them as soon as I could.
Once I came off those medications I felt like I had my brain back again.
Image: Only a handful of patients have been prescribed cannabis on the NHS after it was legalised last year
I felt like I could think and didn’t feel absolutely exhausted and drained from all of these drugs I was having to take to manage the pain.
I had finally found something that was a muscle relaxant and a pain relief, and also helped my digestive system, bladder spasms and every aspect of my condition unlike anything else.
I came off all medications and had my feeding tube removed earlier this year.
It has literally been the most incredible, unbelievable and unexpected year of my life.
I take cannabis oils throughout the day as a baseline and then I take it in a vaporiser for acute pain relief. So when I dislocate something or in extreme pain, I will vaporise.
I can basically reduce my pain levels from around a 10 to a four in a matter of minutes. Before cannabis, the pain would send me to A&E where I would be given high doses of morphine to try and get the pain under control.
I would hate to see what my life would have looked like if I hadn’t found cannabis – it has changed and saved my life.
The law changed a year ago, so patients were told they would be able to have access if there was a clinical need for them to have a medical cannabis prescription.
A year on, the NHS claims there is not enough evidence to support cost-effective prescribing for chronic pain or any condition – so patients like me don’t know what to do.
Either we can go to private clinics and get prescriptions, which cost hundreds and hundreds of pounds a month, or try and manage it on the unregulated black market and become a criminal – and no patient should ever be in that position.
CBD Oil: Risks, Side Effects, and What You Need to Know
Alternative treatments for pain have been in practice for thousands of years. The use of herbs, plants, and the ancient practice of acupuncture for medicinal purposes were in existence long before modern medicine. In recent years, CBD oils and products have seemingly risen to popularity out of nowhere, but scientists have been studying cannabidiol (CBD) since the 1970s.
Dr. Nichelle Renk of Alpenglow Pain & Wellness , in Anchorage, Alaska, is a board-certified pain management physician and anesthesiologist who takes a multidisciplinary approach to treating pain. Dr. Renk customizes a variety of treatments for your specific needs, merging traditional medicine and alternative treatments, so you can get the most effective, long-term pain relief from your chronic condition.
If you’re considering CBD oil for pain management, explore this overview of the risks, side effects, and other important information, so you can make an educated decision about what’s best for you.
What is cannabidiol?
Cannabidiol, commonly called CBD, is a naturally occurring cannabinoid found in the cannabis (marijuana) and hemp plants. According to the World Health Organization , CBD “exhibits no effects indicative of any abuse or dependence potential,” meaning that CBD is not addictive or habit-forming like other pain medications, including opioids, which are commonly prescribed for pain.
CBD oil has demonstrated effectiveness in treating several types of medical conditions, including epilepsy, and it may help relieve chronic pain. Additionally, one does not need increased dose of CBD over time.
Unlike another cannabinoid, tetrahydrocannabinol (THC), CBD does not cause a “high” feeling, so you can potentially relieve pain without alterations to your mood or thinking.
Risk and side effects of CBD
While there’s no evidence to support an addictive nature of CBD oil, you should consult Dr. Renk before you begin using it to help manage your pain. For example, if you’re pregnant or trying to conceive, if your immune system is compromised in some way, or you currently take prescription drugs, CBD oil may not be an ideal treatment.
Otherwise, the vast majority of studies of CBD conclude that CBD is safe and effective at helping you manage an array of health issues.
In clinical trials, when high doses of CBD oil were given to patients, the most common side effects included feeling tired, gastrointestinal issues, and a decreased appetite. Altered liver enzymes were another concern, but again, only after receiving very high doses of CBD in clinical trials, and participants were also taking prescription medications known to damage the liver.
It’s important to note that CBD may interact with your current medications, so it’s imperative that you consult with Dr. Renk before adding CBD oil to your pain management treatments.
CBD oil for chronic pain management
With minimal side effects and risks, you might be wondering if adding CBD to your pain management treatment plan is beneficial. How exactly does CBD relieve pain?
It inhibits inflammatory agents so it can help dull tingling, prickling, and burning sensations associated with some types of chronic pain. This often makes CBD oil an effective supplement for neuropathic pain and other types of pain caused by inflammation.
Recent studies also indicate that CBD oil may be effective at relieving headache and migraine pain , and for arthritis, such as osteoarthritis, which causes joint pain and stiffness. The National Cancer Institute also notes that CBD can potentially reduce the side effects of chemotherapy treatments, including pain, decreased appetite, nausea, and vomiting.
The bottom line on CBD for pain management
Based on what we know about CBD oil and the clinical trials that are available, for the most part, you don’t have to worry about unpleasant side effects or a long-term, addictive nature to CBD oil. As part of a comprehensive pain management plan, CBD oil may help you reduce other medications that do come with side effects and the potential to form a drug dependency.
However, as with any type of treatment, it’s best to consult your physician before beginning something new. Dr. Renk can warn you of any potential drug interactions that CBD could have with your current prescription or over-the-counter pain medications.
Schedule a consultation by calling our office in Anchorage at 907-313-2976, or send us a message online anytime.
You Might Also Enjoy.
Could you have Ehlers-Danlos syndrome (EDS)? This inherited connective tissue disorder causes pain and overly flexible joints and stretchy skin. Take a moment to learn more about the signs and symptoms of EDS, and how this condition is treated.
If you suffer from chronic migraine headaches, you should learn more about these effective treatments to relieve your symptoms of pain, nausea, and sensory distortions. With the right treatment, your migraines can be less severe and less frequent.
Spinal cord stimulation offers an innovative pain relief solution. Take a few moments to learn more about the effectiveness of spinal cord stimulation, and whether this treatment option could be right for you.
Could you benefit from stellate ganglion block (SGB) treatment? This injection procedure can help with symptoms of complex regional pain syndrome (CRPS), post-traumatic stress disorder (PTSD), and even long-haul COVID-19 symptoms. Take a moment to learn mo
Back pain is a common complaint, and it can develop from familiar or little-known causes. Take a few moments to learn more about some of the lesser-known conditions that might be causing your back pain, and what you can do to improve your condition.
Treatments like radiofrequency (RF) ablation offer real promise to alleviate symptoms of chronic pain. Take a few moments to learn more about how RF ablation works, and whether you may be a good candidate for this procedure for long-term pain relief.