The Holistic Treatment Of Ehlers-Danlos syndromes (EDS)

The Resilience Medicine Approach

Holistic EDS Treatment Overview

Intro To Holistic Ehlers-Danlos Syndrome Treatment

Ehlers-Danlos syndromes (EDS) are a group of inherited genetic conditions.  They are often misdiagnosed or undiagnosed for many years.  Hypermobile EDS (hEDS) is the most common type although there are 13 types in total.

A holistic approach to managing EDS can dramatically improve quality of life, especially since hEDS patients are often poorly treated for the associated symptoms experienced.

hEDS is not simply ‘being too flexible.’  It affects many body systems, not just the musculoskeletal system and can also include unexplained neurological symptoms, POTS, severe digestive problems due to slow transit time, problems with the bladder and making cellular energy causing severe fatigue and brainfog and disturbance to sleep cycles and mood. 

Chronic Illness & Ehlers-Danlos Syndrome

It is often known as an ‘invisible’ illness for many people with EDS, especially if you don’t use walking aids people cannot see the disabling symptoms and may think that you are well and look ‘fit.’  Even many doctors  don’t really understand the illness experience and its often devastating effects on quality of life and doing ‘normal’ everyday things due to crippling fatigue alongside pain and gut issues. 

Many people with EDS have other diagnoses too, such as depression, sleep issues, chronic fatigue, anxiety, problems with their digestive system which are often labeled or dismissed as ‘just IBS’ , bladder and women’s health conditions like endometriosis. Without looking at these symptoms and underlying factors together holistically, it is very difficult to get control over any of them because they all affect each other, pain levels and share some underlying mechanisms.

All of the symptoms can be confusing to tease apart, especially since standard specialists only treat symptoms in their area and rarely consider cross-field research.  This often leads to multiple ineffective or high side effect drugs for each symptom and fragmented care. 

Many people with EDS experience a frustrating deterioration in their overall quality of life and ability to do ‘normal’ things from going for walks to seeing friends and going to work, due to a vicious cycle of physically debilitating symptoms, intolerance to being upright/standing up (ie POTS-like symptoms) on top of cognitive brain symptoms like severe brain fog, unpredictable depression and mental fatigue.  

A Holistic Treatment approach helps to break this cycle to improve your quality of life and daily functioning.

The Integrative Medicine Understanding of What Causes EDS

The most common type of EDS, hEDS is a multi-genetic disease and likely involves epigenetic changes too that determines how severe some of the associated symptoms can be, such as widespread pain, mood, fatigue and digestion issues.

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. 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 to other treatments

Symptoms of dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and neuropathic small fibre pain may go overlooked in patients with hEDS but are actually quite common. 

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.

There is also a strong link between hEDS and neurodiversity including ASD and ADHD and these may be genetically linked as well as impact pain signal processing.

The Resilience Medicine Toolkit for EDS

The Resilience Medicine Holistic approach to managing EDS includes considering cannabinoid (cannabis-based) medicines, mindbody approaches, diet and microbiome, prescribed combinations of supplements, nutraceuticals & medications, and creating a resilience environment.  These things when stacked together results in a synergistic effect, where the overall result is bigger than the the sum of each part

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.  These categories were chosen based on Dr Dani’s 15 years of experience using this holistic treatment framework with her patients.  

It’s also worth remembering that 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 the biggest 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 and a system to measure your progress helps remove this confusion and overwhelm and makes sure you are on the best treatment path, since EDS symptoms and the systems most affected are not the same for everyone.

This is a new way of thinking about medicine that goes beyond a ‘disease management’ system but aims to enhance quality of life, energy, mood and reduce pain and the total brain and body stress burden to improve resilience over time to reduce flares and disability.

Medical Cannabis for Ehlers-Danlos Syndrome

Medical cannabis is a legal medicine in the UK, now available on private prescription from a specialist doctor.  Medical cannabis are whole plant medicines which contain 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 for the various symptoms of EDS, making it a highly personalized medicine.Unlike many other medications, medical cannabis is usually well-tolerated and can effectively treat clusters of symptoms with a single medicine. 

Although not a cure for EDS itself, Medical Cannabis can help in those who have failed other approaches to get a quick win in terms of pain and associated symptom relief and starting off a positive neurological ‘cascade’ in the nervous system. 

Most patients see a significant improvement within the first month of therapy across multiple symptom clusters including pain, mood, fatigue, stress, sleep and global functioning. One reason medical cannabis may be effective in treating EDS is that it works on endocannabinoid system (ECS) dysregulation, as well as our serotonin system and inflammation pathways.  There are also receptors in the gut, another system affected by EDS.  Cannabinoids have neuroprotective properties and prescription preparations containing even a ‘microdose’ of THC can work as an effective chronic pain reliever, even when other drugs have not worked or been tolerated . 

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 EDS and chronic painful conditions 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.

Hemp CBD oil wellness supplement products available over the counter at health shops are not the same as medical cannabis and don’t contain any THC.

For most people with EDS, CBD hemp supplements on their own are not effective because they lack this small amount of THC that is normally needed for the pain relieving and sleep restoring effects.

Altered States and Psychedelics for Ehlers-Danlos Syndrome

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 is currently not an option in the UK.

However, if traditional treatments have failed in addressing hard-to-treat depression and neuro-pain,  ketamine therapy may be a viable alternative that can be combined with medical cannabis as part of a holistic approach. Ketamine therapy is now available privately in the UK.

Mindbody Medicine for Ehlers-Danlos Syndrome (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.   

Utilising the bi-directional brain-body communication link can be very effective at reducing pain signalling.  For example, specific Mindfulness for pain practices have been shown to be highly effective for improving quality of life in chronic painful conditions, since it helps regulate the limbic system involved in pain escalation.  

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.  

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.

Creating a tailored mindbody practice to suit you best at each stage of the healing journey and making it easy and unburdensome to stick to is important for effectiveness, since many patients may have tried some of these things previously and not noticed an improvement.

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.

Diet and Microbiome for Ehlers-Danlos Syndrome (EDS)

While EDS is not a nutritional illness, therapeutic diets tailored to each person may alleviate some EDS-associated symptoms or help control certain symptom clusters such as fatigue and brainfog. Therapeutic diets work via multiple mechanisms such as:

  • Influencing multiple inflammation and pain pathways
  • Affecting  neuro-immune modulation
  • Affecting gut-brain axis function
  • Shifting microbiome health 

For example, a modified ketogenic diet may improve symptoms for some people whereas a  low histamine or elimination diet can help others with gut issues and histamine intolerance, both of which are common in EDS.

Other people may respond better to a different therapeutic diet depending on their gut symptoms, such as addressing SIBO and methanogen overgrowth which is so common in EDS due to the altered gut motility. 

This is rarely considered as part of ‘standard’ medical care for EDS despite the huge impact EDS has on the gut and the growing body of evidence.

Medications for Ehlers-Danlos Syndrome (EDS)

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 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, which can all have significant side effects.

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.

Medical cannabis is usually well tolerated even in cases where other medications were not, which makes it a bit unique.

Supplements for Ehlers-Danlos Syndrome (EDS)

Supplements and Nutraceuticals including botanical extracts, medicinal fungi, adaptogens and amino acids and minerals can all be helpful for different symptoms seen in EDS as part of a holistic approach to management.  It’s important to get the dosage and combination right and personalized to you.  For example, most drug store supplements have ineffective dosages or single ingredients that lack the synergistic effect and are usually ineffective.  

Each person will likely have a different ‘stack’ of supplements but may include:

  • Magnesium Glycinate to support muscular and cellular function
  • Mitochondrial & energy support including NAD+ precursors, PQQ, NT factor lipids, R-lipoic acid, alpha keto glutaric acid, phosphatidylcholine, acetyl L carnitine
  • Energizing adaptogens such as cordyceps and astragalus and the ginseng family
  • Pain management nutraceuticals such as liposomal curcumin, boswellia, PEA and alpha lipoic acid
  • Specific b vitamins where deficient
  • Gut support including promotility herbal complexes
  • sleep support botanicals which may include passionflower, hops, valerian and skullcap

Resilience Environment for Ehlers-Danlos Syndrome (EDS)

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.  People with EDS may be more sensitive to environmental factors, which can exacerbate symptoms and reduce overall quality of life. Optimising 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
  • Investigate sources of mould in the home as a contributor for fatigue
  • 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

Infrared saunas and cold water immersion therapy may also be helpful for some patients to alter the pain response and inflammation pathways, but should be done gradually after discussing with a doctor or health practitioner to make sure it’s right for you, especially if you have POTS like symptoms.

Functional Testing for Ehlers-Danlos Syndrome (EDS)

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 customise your treatment based on your biochemistry and underlying contributors to symptoms.

Ehlers-Danlos Syndrome (EDS) Patient Case Study

Patient: 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.

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.

Measuring Quality of Life in Ehlers-Danlos Syndrome (EDS)

One of the challenges of doing multiple things together when you have EDS is how to know what is working and how to keep track of everything without becoming overwhelmed.  This is where a system for measuring and tracking is so important. 

We use a simple resilience and quality of life score metric that you can track in a simple app, including measurements of pain, stress, mood, energy levels and mental clarity.  This helps you track the different aspects of how you are feeling as you go on your healing journey.

Validated rating scales for pain and fatigue, such as the FSS and sleep assessments can also be useful.  

We track these metrics over time and put you in charge of your data with easy to read metrics so both you and your medical team can see what’s working and tweak the plan over time.

Next step

EDS can be really difficult and exhausting to navigate on your own but you can start feeling better and stay well.

Dr. Dani has helped thousands of patients with difficult to treat chronic painful conditions including EDS over the past 15 years using this approach, first in North America where it is more developed and now in the UK. 

Using a specific, personalised holistic approach to the pain, fatigue and related symptoms can dramatically improve your quality of life even if you have failed multiple treatments in the past. 

To take the next step in your journey, book an initial consultation with our expert physicians.