Managing Ehlers-Danlos Syndrome Naturally

Ehlers-Danlos syndrome (EDS), is a genetic condition that mainly affects the joints, skin and walls of the blood vessels. Depending on the type of EDS you have, a combination of natural treatments and lifestyle modifications, in conjunction with traditional treatments, can contribute greatly to symptom control.

Find out more about this often-painful condition, what to symptoms to look for and how best to manage pain and other symptoms naturally.

What is Ehlers-Danlos syndrome?

The Ehlers-Danlos syndromes are a group of connective tissue disorders caused by varying genetic defects primarily in the structure, production, and/or processing of collagen. Collagen gives tissues strength and structural integrity. Therefore, mutations in the collagen genes can cause disorders like EDS, which are characterised by either poor strength or deficiency of collagen. [1]

EDS is one of the oldest known causes of bruising and bleeding and was first described by Hippocrates in 400 BC.

The syndrome is named after Edvard Ehlers, a Danish dermatologist, (1863–1937) and Henri-Alexandre Danlos a French dermatologist (1844–1912). In 1936 an English physician, Frederick Parkes-Weber, suggested that the disorder be named ‘Ehlers-Danlos syndrome’.

From the 1960s the genetic make-up of EDS was identified. [2]

What are the symptoms of Ehlers-Danlos syndrome?

The primary features of Ehlers-Danlos syndrome are joint hyper-mobility, chronic pain and fatigue. Many people with EDS experience symptoms such as easy bruising, bleeding, varicose veins and poor tissue healing.

Common symptoms of the Ehlers-Danlos Syndromes include the following:

• Joints: Hyper-mobility, or an unusually large range of movement in joints; loose joints prone to dislocation; chronic joint/limb pain; early onset of osteoarthritis.
• Skin: Highly stretchy, velvety skin that is extremely fragile and bruises easily; telangiectasia; abnormal scarring; slow wound healing with scars that form characteristic “cigarette paper” appearance; molluscoid pseudotumors; subcutaneous spheroids, or hard nodules under the skin.
• Bone: Osteoporosis, scoliosis (from birth).
• Gastrointestinal: Hiatal hernias, visceroptosis, rectoceles, rectal prolapse, changes to gut motility.
• Eyes: Unusually small corneas, scleral fragility.
• Heart: Rupture-prone arteries, mitral valve prolapse. [3]

Types of EDS

The Ehlers-Danlos syndromes are classified into a system of types. The classification of each type helps guide clinical diagnosis and appropriate treatment.

Classical EDS (cEDS) 

Gene: COL5A1, COL5A2, COL1A1

People with cEDS may have:

• joint hyper-mobility
• loose, unstable joints that dislocate easily
• stretchy skin
• fragile skin that can split easily, especially over the forehead, knees, shins and elbows
• smooth, velvety skin that bruises easily
• wounds that are slow to heal and leave wide scars
• hernias and organ prolapse

Classic-like EDS (clEDS)    

Vascular EDS (vEDS) 

Gene: COL3A1, COL1A1

People with vEDS may have:

• skin that bruises very easily
• thin skin with visible small blood vessels, particularly on the upper chest and legs
• fragile blood vessels that can bulge or tear, resulting in serious internal bleeding
• a risk of organ problems, such as the bowel tearing, the womb tearing (in late pregnancy) and partial collapse of the lung
• hypermobile fingers and toes, unusual facial features (such as a thin nose and lips, large eyes and small earlobes), varicose veins and delayed wound healing

Hypermobile EDS (hEDS) 

Gene: Unknown

People with hEDS may have:

• joint hyper-mobility
• loose, unstable joints that dislocate easily
• joint pain and clicking joints
• extreme tiredness (fatigue)
• skin that bruises easily
• digestive problems, such as heartburn and constipation
• dizziness and an increased heart rate after standing up
• problems with internal organs, such as mitral valve problems or organ prolapse
• problems with bladder control

Arthrochalasia EDS (aEDS) 

Dermatosparaxis EDS (dEDS) 

People with hEDS may have:

• soft, doughy skin that is extremely fragile
• saggy, redundant skin, especially on the face
• hernias
• mild to severe joint hypermobility

Gene: ADAMTS2

Kyphoscoliotic EDS (kEDS) 

Gene: PLOD1, FKBP14

People with this type of EDS may have:

• curvature of the spine – this starts in early childhood and often gets worse in the teenage years
• joint hyper-mobility
• loose, unstable joints that dislocate easily
• weak muscle tone from childhood (hypotonia) – this may cause a delay in sitting and walking, or difficulty walking if symptoms get worse
• fragile eyes that can easily be damaged
• soft, velvety skin that is stretchy, bruises easily and scars [4]

Gene: ZNF469, PRDM5

People with hEDS may have:

• congenital multiple contractures, characteristically adduction-flexion contractures and/or talipes equinovarus (clubfoot)
• characteristic craniofacial features, which are evident at birth or in early infancy
• characteristic cutaneous features including skin hyper-extensibility
• easy bruisability
• skin fragility with atrophic scars
• increased palmar wrinkling

Myopathic EDS (mEDS) 

Gene: COL12A1

People with hEDS may have:

• congenital muscle hypotonia, and/or muscle atrophy, that improves with age
• proximal joint contractures
• hyper-mobility of distal joints. [5]

What causes EDS and what are the risk factors?

As seen above, Ehlers-Danlos syndromes are genetic disorders. In many subtypes of EDS, the genes are known and can be found in a blood test. In other types of EDS, however, the genetic cause is not yet known. Regardless, in most cases these gene mutations change the way collagen is made or used in the body.

Your risk of having EDS depends on the subtype that runs in your family. Some subtypes have a dominant inheritance pattern, meaning you only need to get the mutated gene from one parent in order to have the syndrome (each child has a 50-50 chance). Other subtypes are recessive, meaning they have to inherit a mutated gene from both parents. In recessive subtypes, each child of two parents with the gene has a one in four chance of having the syndrome.

Other than having a family history of EDS, there are no known risk factors. The disease affects every race and ethnicity and impacts men and women equally. [6]

How to manage Ehlers-Danlos syndrome

The best treatment for Ehlers-Danlos syndrome (EDS) will depend on the EDS subtype you have what your individual symptoms are.

Chronic pain is particularly difficult for people with EDS to manage, with conventional methods often having limited and impermanent effects and opioids are now considered incapable of successfully controlling it. [7]

In in addition to pain management, medications, therapies, exercises, lifestyle modifications, including diet changes), and supplements can help you to manage symptoms and live well.

Lifestyle modifications

Lifestyle modifications can be extremely helpful in the management of EDS pain. Depending on your needs, modifications may include:

• reducing your stress through meditation, yoga, taking walks in nature or doing any of the things you enjoy
• get low impact exercise such as tai chi, swimming, walking or anything that doesn’t cause you pain
• get physical therapy to help you with you gait, strength, posture and stability. It will also help you with the pain.
• if you work in an office, improve the way you sit at your desk ie. work ergonomics (focus on protecting your joints and reducing pain)
• getting good quality sleep and enough of it
• if you smoke, stop!
• maintaining a healthy body weight. Being overweight put significant stress on your joints and may make the pain you experience from EDS worse.
• Look after your skin with sunscreen and moisturisers.

Nutritional supplementation for EDS

People with Ehlers-Danlos Syndrome often experience fatigue. One of the reasons is that they have difficulty absorbing essential vitamins and minerals.

The symptoms associated with Ehlers–Danlos syndrome may be successfully alleviated using a specific combination of nutritional supplements:

• Calcium
• Carnitine
• Coenzyme Q10
• Glucosamine
• Magnesium
• Silica
• Vitamin C
• Vitamin K [8]

In addition to the above supplements, a diet that has been shown to be effective in reducing symptoms of EDS is the low FODMAP Diet (a diet which is low in fermentable oligosaccharides, disaccharides, monosaccharides and polyols).

When you are following a low FODMAP diet, you need to avoid the foods that aggravate the gut, including:

• Dairy-based milk, yoghurt and ice cream
• Wheat-based products such as cereal, bread and crackers
• Beans and lentils
• Some vegetables, such as artichokes, asparagus, onions and garlic
• Some fruits, such as apples, cherries, pears and peaches

Instead, base your meals around low FODMAP foods such as:

• Eggs and meat
• Certain cheeses such as brie, Camembert, cheddar and feta
• Almond milk
• Grains like rice, quinoa and oats
• Vegetables like eggplant, potatoes, tomatoes, cucumbers and zucchini
• Fruits such as grapes, oranges, strawberries, blueberries and pineapple [9]

You can find out more about the science behind the low FODMAP diet here.

Muscle relaxation

Joint instability may lead to muscle spasms, which may cause some of the pain experienced with EDS. Relaxing the muscles often reduces this pain. Techniques to relax the muscles include the following:

• Massage
• Heat
• Ultrasound
• Transcutaneous electrical nerve stimulation (TENS)
• Myofascial release
• Stretches
• Acupuncture
• Epsom salt baths [10]

How we can help

While there is no cure for EDS, using a combination of therapies, supplements, medications, exercises and alternative treatment options can support your overall health

At Advanced Functional Medicine, we will support you, in conjunction with a multi-disciplinary team, to balance your gut and biochemistry, assist to reduce your pain as much as possible and improve your overall health.