Ehlers Danlos Syndrome is actually an umbrella of inherited conditions that have wide-reaching effects on the body. The most common type is h-EDS, where the H stands for hypermobility. It’s characterised by extra flexible joints and stretchy skin. Heart valves can also be more mobile than usual, leading to a link with cardio issues. Digestive issues are common among people with h-EDS too.

Identifying h-EDS

EDS is considered a rare disease, and diagnosis is often delayed. Like IBS and fibromyalgia, there are no blood tests or x-rays that can diagnose it: it’s a functional condition. Tests can, however, be useful for ruling out other conditions. Indeed, ruling out other conditions is a necessary part of the diagnostic journey. The adult criteria for diagnosing EDS includes:

• assessing hypermobility
• chronic pain
• family history
• other features, like pelvic organ prolapse, a high palate, skin texture and stretchiness
• exclusion of other conditions that could explain the symptoms

Symptoms can be subtle or vague. The joint hypermobility can lead to more falls and joint dislocations, but it might be dismissed as clumsiness. Chronic pain is a common complication, but it can be a struggle to get to the bottom of it without a diagnosis to explain it. Less commonly, headaches can be a feature of the condition. Understanding the whole picture is key to indentifying EDS.

Osteopathy for Ehlers Danlos Syndrome

We often see patients whose pain is associated with hypermobility. So although we can’t resolve the condition itself, we have strategies to manage the symptoms.

When ligaments are lax, joints can travel too far. But if the surrounding muscles are strong, they can help to take over some of role of the ligaments. This is particularly important when joints have dislocated in the past. Without proper rehabilitation and strengthening, recurrent dislocation is much more likely.

Nerve pain is also more common among people with EDS. This might present as sciatica, carpal tunnel syndrome, or something similar in another area. Whether this is part of your chronic pain picture or tends to come and go, we can help to identify where the nerve irritation occurs. From here, we can see if there are any areas of restriction nearby that might be overworking the area and feeding into the problem. Just like with any other patient, we will look at your presentation as a whole to work out what the best course of action would be. Although the EDS may complicate things, it doesn’t necessarily mean we won’t be able to get on top of your symptoms.

No two cases are the same, so at your initial appointment we can identify the areas that need help. With this in mind, we can devise a personalised treatment and exercise plan. Our aims are to reduce pain and improve function, but do let us know if there are any specific goals you’d like to work towards. Things like wanting to return to sport are really helpful for us to know so we can both be on the same page.

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