Introduction to the Holistic Treatment of EDS
The Resilience Medicine Approach to the treatment of Ehlers-Danlos syndromes (EDS) with holistic, integrative and cannabinoid medicine.
What is EDS?
Ehlers-Danlos syndromes (EDS) are a group of inherited genetic conditions that cause hypermobility as well as many other symptoms. They are often misdiagnosed or undiagnosed for many years. There are 13 types of EDS, most of which are rare but hypermobile EDS (hEDS) is the most common type.
Some people may have hypermobility symptoms and other symptoms like pain but do not meet the full criteria for hEDS and are diagnosed with what is called Hypermobility spectrum disorder (HSD), which can be treated similarly to hEDS.
While there is no cure for EDS itself, a holistic approach can dramatically improve quality of life, and reduce common symptoms experienced by those with EDS such as fatigue, pain, brain fog, anxiety, and improve mood so you can return to life again.
In this article you are going to learn about each of these holistic approaches in detail, how to use them for your healing journey as well as the latest research evidence and and EDS case study to help remove the confusion and help you navigate a path to feeling better.
Ehlers-Danlos Syndromes (EDS) is a group of inherited genetic conditions that primarily affect connective tissue, and one of its most common forms is hypermobile Ehlers-Danlos Syndrome (hEDS). Individuals with hEDS experience a range of symptoms, which can include:
- Joint hypermobility: One of the most recognizable symptoms of hEDS is increased range of motion of the joints, beyond what is typical in the general population. This is from the underlying collagen abnormalities, which can weaken the ligament and joint capsule structures supporting the joints.
- Loose, unstable joints that dislocate easily: Frequent joint dislocations and subluxations are common in people with hEDS. Even daily activities like putting on shoes or twisting to grab something can cause joints to slip.
- Joint pain and clicking: Joint pain is another common symptom of hEDS. Pain in the joints, such as in the knees and shoulders, can be accompanied by clicking or popping sounds in the affected area.
- Body pain: Pain in the body can be diffuse and generalised to different parts of the body. It is not unusual to experience undue soreness even after light activity.
- Extreme tiredness (fatigue): Individuals with hEDS often report fatigue and a reduced physical endurance level, despite adequate rest.
- Skin that bruises easily: Many people with hEDS may notice that their skin bruises easily, even with minimal trauma or injury. Wounds may also take longer to heal.
- Digestive problems, such as heartburn and constipation and severe issues with slow transit
- Dysautonomia-this is a problem with the autonomic nervous system and can often affect the digestive system, leading to various motility and absorption issues.
- Dizziness and an increased heart rate after standing up including POTS syndrome:
- Postural orthostatic tachycardia syndrome (POTS) is a type of dysautonomia which may cause dizziness, lightheadedness, and an increased heart rate upon standing up as well as low mood, brainfog and fatigue due to lack of normal blood flow to the brain
- Problems with internal organs: such as pelvic floor dysfunction, uterine prolapse, hernias.
- Problems with bladder control: overactive or irritable bladder or difficulty with bladder control.
- Unexplained neurological symptoms including severe episodes of brain fog and reduced cognitive function that are difficult to c
What Causes EDS?
The causes of hypermobile Ehlers-Danlos Syndrome (hEDS) are not yet fully understood but in hEDS, multiple genes are involved.
There is also mitochondrial dysfunction and autonomic nervous system dysfunction which causes many of the most troublesome symptoms.
Inflammatory cytokines may play a role in the progression of the disease. It is worth noting that hEDS is not a psychosomatic disease, it has a biological basis.
Research has shown that some people with hEDS have endocannabinoid system dysfunction. The endocannabinoid system is a neuroregulatory system found in the brain and body that regulates pain signals, mood, fatigue, and responses to stress. This may help explain why medical cannabis has been shown to help alleviate many symptoms-resistant cases of hEDS.
People with hEDS often experience gastrointestinal symptoms, such as constipation, diarrhoea, and heartburn. It is common for these symptoms to be brushed off or misdiagnosed for years as ‘just IBS.’
Additionally, symptoms of dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and neuropathic small fibre pain may go overlooked in patients with hEDS.
Emerging evidence in this field suggests that the collagen sheaths surrounding nerves may be implicated in these symptoms, perhaps explaining the unusual location and character of the pain experienced by patients. If these symptoms are overlooked, they can have a major impact on quality of life. Individuals with hEDS should seek proper medical care from a practitioner who understands the complexities of managing this condition.
Finally, research in emerging areas such as the endocannabinoid system, the link between neurodiversity and EDS and small fibre neuropathy offer further hope for a better understanding of these conditions and progressing towards more targeted treatments.
Diagnosis of EDS
The hypermobility type of EDS (hEDS) is the most common form of the condition, and unlike the rarer types of EDS, it is a multi-gene disorder. This means that hEDS can be caused by mutations in a number of different genes, making it a complex condition that can be difficult to diagnose.
Diagnosis is made based on a clinical evaluation of the patient’s symptoms, medical history, and family history of the condition and ruling out other conditions.
This can involve a range of tests and assessments, including joint mobility testing, skin examination, and imaging studies such as MRI or ultrasound. Due to the complex and varied nature of hEDS, it is important to work with healthcare professionals who are familiar with the condition and can provide specialized care and support. With the right diagnosis and treatment plan, however, people with hEDS can learn to manage their symptoms effectively.
Unlike the hypermobility type of EDS (hEDS) the other types of EDS can often be diagnosed through genetic testing. A blood test can be used to identify the specific gene mutations, allowing for a more definitive diagnosis and more targeted treatment options.
However, it is important to note that even with a genetic diagnosis, the symptoms and severity of EDS can vary widely between individuals and require personalized care and treatment. Regardless of the specific type of EDS, early diagnosis and management can help improve the quality of life for those with the condition.
Physical Signs of hEDS used in diagnosis: The Beighton score
The Beighton score is normally used for the assessment of hypermobility syndrome and the following signs and symptoms:
Pains in knees, fingers, hips and elbows and one or more of the following:
- The wrist and thumb can be moved downward in a manner that the thumb touches the forearm.
- The little fingers can be extended back over 90 degrees.
- When standing, the knees are abnormally bowed backwards (hyperextended) when viewed from the side.
- When fully extended, the arms bend further than normal.
- When bending at the waist, with the knees straight, you can put your palms flat on the floor.
Some people with hEDS may be missed in diagnosis even into their 50s or older because as you become older, your body adapts as best it can to EDS by stiffening up in some places, masking the classic hypermobility signs. You can become a ‘stiff hypermobile’ person.
However, by looking back at the history when you were younger as well as the other symptoms of the hEDS such as unexplained symptoms, fatigue, POTs-type symptoms and neurological symptoms it is possible to uncover EDS as a cause of many seemingly unrelated issues over many decades.
The Resilience Medicine Toolkit for Fibromyalgia
The Resilience Medicine holistic approach involves incorporating interventions from 6 main categories: Cannabinoids & Power Plants, Diet + Microbiome, Mindbody, supplements & botanicals, Passion and connection & creating a resilience environment.
In the clinic, we also use functional medicine tests and approaches to further personalise treatment based on biomarkers, gut markers and genomics in some cases. We also, where needed, use medications, often with prescribed combinations of nutraceuticals.
These categories were chosen based on Dr Dani’s 15 years of experience using this holistic treatment framework with her patients. Often it is when things from different categories are ‘stacked’ on top of each other to create a unique integrative plan or ‘stack’ that gives the most benefit in EDS, since everyone’s illness is slightly different.
Even if you have tried some of these things before on your own, it is often getting the right combination of things done at the right time that makes a big difference.
It can be very overwhelming and confusing trying to navigate all of the pieces of a holistic treatment plan on your own. Having expert guidance helps remove this confusion and overwhelm and makes sure you are on the best treatment path for your individual needs.
Medical cannabis is a legal medication in the UK and is currently available on private prescription from a specialist doctor. Medical cannabis is whole plant medicine which contains over 100 active cannabinoid compounds, which are thought to work together to deliver the medicinal effects although the main cannabinoids used for dosage currently are CBD and THC. The different strains or chemovars, can produce different therapeutic effects, making it a highly personalized medicine.
Medical Cannabis can often help patients who have failed other approaches, to get a quick win in terms of symptom relief and starting a positive neurological ‘cascade’ leaving you more able to engage with other aspects of a holistic treatment plan.
Most patients see a significant improvement within the first month of therapy across multiple symptom clusters including improved mood, fatigue, stress, pain, sleep and mental function.
How is Medical Cannabis Different to CBD I can buy in a shop without a doctor?
It’s important to clarify the distinction between hemp CBD oil wellness supplements available over the counter at health shops and medical cannabis. While both are derived from the cannabis plant, hemp CBD oil supplements do not contain measurable amounts of THC and are not made to medical standards.
On the other hand, prescription medical cannabis contains low doses of THC, which plays a crucial role in its therapeutic effects. The reason being that THC interacts with the endocannabinoid system (ECS) in the brain differently and can help with difficult EDS symptoms like nausea and IBS-like pain, improve sleep and provide pain relief. Medical cannabis uses both CBD and THC to achieve optimal therapeutic effects. Often THC used in a very low dose or ‘microdose’ can have a significant effect when cbd supplements have failed. CBD on its own is rarely effective in EDS.
Medical Cannabis for EDS
Incorporating medical cannabis into the treatment plan for individuals with Ehlers-Danlos Syndrome (EDS) can be a game changer. Dealing with the cluster of symptoms that arise from this condition can be a daunting challenge, but using medical cannabis can help alleviate many of these symptoms by using a single medication that is usually well-tolerated, unlike most other medications often recommended for EDS patients. Medical cannabis can alleviate pain, reduce fatigue, improve sleep quality, ease anxiety, improve mood & motivation and dramatically change quality of life.
The therapeutic benefits of medical cannabis are largely attributed to its interaction with the endocannabinoid system (ECS) and serotonin system. Medical cannabis is known to help balance the ECS, decrease inflammation pathways, and promote neuroprotection and mitochondrial stability when used correctly. All of these mechanisms are imperative for managing the diverse array of symptoms experienced by EDS patients.
Medical cannabis treatment for EDS patients should be personalized and tailored to the individual’s unique needs. The type of cannabis product, delivery method, and minor cannabinoid and terpene profile should be considered when designing a treatment plan.
It is critical to avoid choosing the wrong type of cannabinoid medication, as doing so can exacerbate fatigue and anxiety in EDS. To optimize symptom relief, cannabis that focuses on upliftment during the day and longer-lasting calming effects at night can be particularly helpful for sleep disturbances.
Dr. Gordon is the most experienced cannabinoid medicine physician in the UK, has trained the first UK specialist physicians in the prescribing of medical cannabis for multiple complex chronic conditions including hEDS and has treated thousands of patients with medical cannabis first in Canada and in the past few years in the UK since it has become legal. She uses a more holistic individualized approach to cannabinoid therapy, due to her expertise in Integrative & botanical medicine in addition to her conventional medical training as a physician.
Therapeutic Psychedelics for EDS associated symptoms
There are documented cases of patients who have resorted to ‘microdosing’ with therapeutic psychedelics to alleviate symptoms commonly associated with Ehlers-Danlos Syndrome (EDS), such as fatigue, pain, and mood disturbances. Despite the positive impact observed in these individual cases, more extensive studies replicating the effects of psychedelic microdosing on EDS patients still need to be undertaken and it currently not an option in the UK.
However, if traditional treatments have failed in addressing hard-to-treat depression and neuro-pain, then ketamine therapy may be a viable alternative that can be combined with medical cannabis. In fact, ketamine therapy is now available on a private prescription basis in the UK and may effectively treat depression that has been resistant to other forms of treatment, as well as some forms of chronic pain.
Though microdosing with therapeutic psychedelics is an emerging trend in addressing debilitating symptoms associated with EDS, further research is necessary to validate its efficacy. On the other hand, ketamine therapy proves to be a promising option for patients with treatment-resistant depression and chronic pain, and its accessibility in the UK on a case-by-case basis provides a valuable alternative for those who have exhausted traditional treatments.
Therapeutic Diets for EDS
While EDS is not a nutritional illness, therapeutic diets such as a modified ketogenic diet, low histamine or elimination diet, or a low glycemic index diet may alleviate some EDS-associated symptoms or help control certain symptom clusters such as fatigue and pain.
A modified ketogenic diet, for example, could be beneficial for patients experiencing chronic pain, as it has been shown to reduce inflammation and promote fat burning. On the other hand, a low histamine or elimination diet could help patients with gut issues and histamine intolerance, both of which are common in EDS. Meanwhile, a low glycemic index diet may help regulate blood sugar levels and improve overall energy levels.
It is important to tailor the diet plan to the individual patient’s specific symptom profile, POTS, gut and blood biomarkers, and other relevant factors.
Mindbody Medicine for EDS
Mindbody practices help to actually change the brain structure and function in multiple ways, turn down the volume on stress, anxiety and pain signals and help our brain’s become more resilient.
Utilizing the bi-directional brain-body communication link can be very effective at reducing pain signaling. For example, specific Mindfulness for pain practices have been shown to be highly effective for improving quality of life, pain and coping in patients who suffer with chronic painful conditions.
This is because chronic pain becomes ‘wired’ into the brain and nervous system, not just in the place you feel the pain, like a joint. This starts a cycle of brain amplification of pain signaling and chemical messengers involving the limbic system, which mindfulness helps to regulate.
Many people with EDS suffer from what we call ‘neuropsychiatric symptoms.’ These are very real symptoms with a brain basis that are more common in people with EDS and hypermobility syndrome and can include anxiety, low stress tolerance, depression, and sleep disturbances. People with ADHD and neurodiversity are also more likely to have EDS and treatment needs to be tailored further to you.
Techniques to activate the Relaxation Response, based on Dr. Gordon’s experience studying these techniques at Harvard University with Dr. Benson as well as other targeted techniques have been shown to have great healing benefits for EDS patients.
Neuromodulation home devices including CES devices, vagal nerve stimulators and other noninvasive techniques may be incorporated into the mindbody approach and monitored with the doctor over time to track progress.
EDS & Physical Exercise:
Specific forms of exercise can also help stimulate endorphin release. However, with EDS, exercise can also lead to more fatigue, pain and brainfog and dysautonomia symptoms which leave you incapacities for sometimes days at a time.
This is why we use specific EDS functional restoration programmes including the option of working with a specialised physiotherapist is key to improving exercise tolerance, dysautonomia and physical fitness as well as supporting hypermobile joints to reduce subluxations and muscle spasms and pain.
Supplements for EDS
Supplements, including nutraceuticals, botanical extracts, medicinal fungi, adaptogens, and minerals, can be helpful in managing symptoms associated with EDS.
deally, these supplements should be tailored to each person based on their specific symptoms.
Many ingredients are compounded into single-tablet formulas for ease of use and improved effectiveness. It’s important to use clinical-grade supplements for treatment under the care of a medical practitioner to get the most out of supplements, but many of these ingredients can be found online.
Here are some examples of supplements that may be beneficial for individuals with EDS:
- Mitochondrial & energy support including NAD+ precursors, PQQ, NT factor lipids, R-lipoic acid, alpha keto glutaric acid, phosphatidyl choline, acetyl L carnitine
- Energising adaptogens such as cordyceps and astragalus and the ginseng family
- Pain management nutraceuticals such as liposomal curcumin, boswellia, PEA and alpha lipoic acid
- Brain fog and mental function
- Immune system regulation
- b vitamins
- sleep support botanicals which may include passionflower, hops, valerian and skullcap
There is no single medication to treat EDS. Instead, often medications are used to target symptoms such as pain or sleep disturbance. Many medications are not well tolerated by patients with EDS which is why a holistic approach is so important.
One commonly prescribed medication for EDS is nonsteroidal anti-inflammatory drugs (NSAIDs) to relieve pain. However it can worsen digestive dysregulation. Other medications that may be prescribed for pain management include opioids, muscle relaxants, and antidepressants.
In addition to pain management medications that increase blood pressure or heart rate may be used to manage symptoms of orthostatic intolerance or POTS, a common condition associated with EDS characterized by lightheadedness and dizziness upon standing up.
Our environment plays a significant role in our overall health and resilience, from exposure to noise and light pollution to air pollution and chemicals in our food. Our genes also interact with our environment to impact how we respond to these external factors. For instance, certain genetic variations may make individuals more susceptible to the effects of pollutants in the environment, leading to a range of health symptoms, including chronic fatigue triggered by environmental factors like home renovations or working in a toxic building with chronic mold exposures.
People with EDS may be more sensitive to environmental factors, which can exacerbate symptoms and reduce overall quality of life. Optimizing the home environment can be a critical step in managing symptoms associated with EDS.
Some strategies for creating an EDS-friendly home environment include:
- Try using air purifiers and plant-cleaning plants to improve indoor air quality
- Try avoiding harsh chemical cleaners and products that contain fragrances or other irritants
- Reducing noise pollution by using sound-absorbing materials like curtains and carpets where possible
- Limiting exposure to bright lights, especially in the evening, to support healthy sleep patterns and use blue-blocking glasses after dinner if on screens
- invest in an ergonomic work set-up if you work from home or speak to your employer to help set this up at the office
- Consider specific pillows and mattresses to support the spine for back vs slide sleepers especially if prone to subluxations and/or back and neck pain
Functional Medicine Tests for CFS
We can use functional medicine testing to look at factors such as mitochondrial function markers, genetic stress tolerance, gut microbiome and gut-brain axis function, inflammatory biomarkers, circadian rhythm dysfunction, hormone levels, environmental exposure loads and more, based on your specific situation and symptoms. These tests are optional. In many cases, they can help further customize your treatment based on your biochemistry and underlying contributors to symptoms.
Passion & Connection in EDS
Nurturing social connections, bonding, and cultivating warm and close relationships can play a pivotal role in fostering positive impacts on physical health, immune system function, and brain well-being. However, individuals with EDS often encounter challenges that leave them feeling isolated and unable to sustain their passion projects due to the inconsistency of their health. Fortunately, there are strategies to rekindle these vital aspects of life while prioritizing healing.
Recognizing the significance of social support, one simple step is to reach out to one close connection who can provide understanding and encouragement, even if it is by text message if you feel too unwell to have phone or in person chats.
Additionally, exploring low-energy, non-physically demanding hobbies can be a constructive means of reintroducing passion into life while working on healing. These hobbies should be tailored to suit your energy levels and physical limitations, ensuring that they can be pursued comfortably without exacerbating symptoms. This can help give a renewed sense of purpose, fulfillment, and joy, even during challenging times.
The process of nurturing passion and connections when you have EDS requires patience and most of all, self-compassion. Compassion-focused therapy can sometimes help give the encouragement and support needed as part of the holistic plan to healing and fulfillment.
Ellie, Age 35
Goal: find out what was ‘wrong’ with me and get better so she could go back to yoga again. Ellie had been diagnosed with fibromyalgia, chronic fatigue and depression and had a lot of signs and symptoms of hypermobility but had not been formally diagnosed or discussed. She had tried lots of medications without much success. Her pain and fatigue was getting worse and she had given up a lot of her active hobbies like yoga.
The Plan: After a full assessment, we discovered that likely hEDS was playing a role in her many overlapping symptoms. This helped ‘connect a lot of dots.’ We started a low dose of medical cannabis to reduce pain, sleep issues and fatigue, added mitochondrial support for energy and optimized her gut microbiome to reduce her gut symptoms after functional testing to guide us and started a functional restoration program. We also used overhydration and electrolytes and slow sodium to help with her POTs-like symptoms.
The Outcome: 6 months later, she had more energy, vastly improved pain and better overall functioning. She was able to start doing yoga again under the specialized physio guidance to modify poses for her EDS. She also was able to stop her other medications causing side effects and felt happier generally that she was now able to do more things ‘like normal’ again.
In summary, using a specific, evidence-based holistic approach to treating EDS and related symptoms can dramatically improve quality of life, relieve pain, improve energy & cognitive function and remove the confusion and overwhelm of trying to navigate this complex illness on your own. To take the next step in your journey, book an initial consultation with our expert physicians.