Category: Pain

What is Ehlers Danlos Syndrome?

Ehlers Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that is classified into 13 subtypes. A variation in our genetic code causes our body to improperly form connective tissue, such as collagen. Collagen and other connective tissue help form our joints, skin, and ligaments. 

Common Symptoms of EDS 

Symptoms typical of most EDS subtypes include joint hypermobility, for example, being able to fold your finger back to touch your arm or being double jointed. Skin hyperextensibility is also a symptom of EDS, where the skin is extra stretchy. People with EDS may also have tissue fragility, which results in easy bruising, cuts, and scarring. 

EDS patients often develop a group of seemingly related conditions of which their connection is still not fully understood. These conditions are dysautonomia (including POTS, postural orthostatic tachycardia syndrome), gut dysmotility, mast cell activation syndrome as well as small fiber neuropathy. These conditions can bring about many issues around pain, sleep, digestion, fatigue and energy just to name a few. These symptoms can lead to a vicious cycle of pain and sleep exhaustion. 

Conventional Treatment for EDS

Conventional treatments for EDS and its associated conditions may include physiotherapy, surgery, over-the-counter pain medications, and corticosteroids, though these aren’t the only treatments available. 

Natural Ways to Support EDS

A natural approach to EDS may involve botanical medicines, nutraceuticals, diet and lifestyle medicine, hydrotherapy and physical therapies such as physiotherapy and chiropractic care. When seeking physical therapies, it is essential to work with a health professional who understands EDS and hypermobility. Overstretching and overexertion are serious considerations and if neglected or misunderstood can cause harm. 

Botanical Medicine and EDS

Botanical medicine utilizes the healing properties of plants and may be used to support people with EDS and its comorbidities. Many of the medicines and over-the-counter medications we have today have their origins in natural substances. For example, aspirin is a common pain reliever and its active ingredient is acetylsalicylic acid (ASA). ASA comes from salicylic acid,  first extracted from willow bark. We first knew of willow bark as a pain reliever from the ancient Egyptians who wrote about it some 3,500 years ago. 

A large body of evidence now exists that explains how botanicals can be used to treat and manage our health. Chamomile is a good example of this, as it can be used in numerous ways to treat many conditions. Evidence has shown that chamomile can help relax the muscles on the intestine, reduce cramping, protect the intestinal lining against the formation of ulcers, and the herb has an antidiarrheal effect. When used topically or in an ointment, it can help improve the healing of wounds, and can be used in the treatment of hemorrhoids and eczema.  Studies have even shown that it can be used in the treatment of sleep, anxiety and diabetes. 

Ginger is another botanical with many uses. It is commonly used to help with nausea and upset stomach and is commonly used during pregnancy to help with morning sickness. 

Supplements for EDS

Nutraceutical medicine is the use of vitamins and minerals in a therapeutic manner. A very popular nutraceutical many people are familiar with is melatonin. Melatonin occurs naturally in nature and even in humans. Melatonin plays a role in the management of our sleep cycle and circadian rhythm. Research suggests that melatonin may play a much greater role in our health and wellbeing. Small fiber neuropathy, a feature of EDS, can result in neuropathic pain. Research has suggested that melatonin may play a role in the modulation of neuropathic and inflammatory pain as well as improve the healing of damaged nerves.

Hydrotherapy for EDS

Hydrotherapy is a term used to describe the use of water in a therapeutic manner. For example, a common form of hydrotherapy is contrast showers. If you are interested in learning how to have a contrast shower at home you can follow a guide on my social media @allie.wellness for instructions.

Evidence has shown that hydrotherapy plays a role in strengthening aspects of our nervous system and blood flow. This can help patients manage symptoms related to blood pressure and pain.  

Lifestyle medicine for EDS

Lifestyle and diet modifications (LDM) are another treatment modality utilized in EDS care. This modality is where I feel most people appreciate what individualized care is. EDS is on a spectrum and may not present the exact same for everyone. Part of the approach is to understand what the unique factors that affect you are, how they affect you and what you can change or modify in your own life to improve your quality of life and daily living. 

Some people may find eating a specific food may cause a flare up of MCAS (mast cell activation syndrome) or result in the sudden onset of fatigue. We cannot always avoid certain triggers, but understanding the way they affect us allows us to better plan to mitigate their effects. It isn’t always about harm reduction. Learning about ourselves and which changes improve our symptoms is also an important part of this modality. 

Working with a health professional knowledgeable on EDS is crucial to overall care. Treatments need to be individualized so that they are appropriately, effective and safe for each individual.