The Symptoms I Didn't Know Were Signs of My Hypermobility Disorder

Article updated August 15, 2019.

Some illnesses are easy to recognize. If you’re sneezing and congested, with headaches and maybe a temperature, chances are you’ve got a cold. But perversely, it is often the much more serious, long-term conditions affecting our bodies which slip under the radar. That’s partly because we’re only just starting to talk openly about chronic illness, but it’s also because they’re harder to pin down. It may take years – or in my case, decades – to put together all the seemingly disconnected symptoms to form the bigger picture.

• What is Ehlers-Danlos Syndrome?
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I have hypermobility but it took me too long to work this out. Although my symptoms appeared around the age of 12, a lack of awareness and education meant that it wasn’t until I was 42 that I joined the dots and discovered my condition. Getting a diagnosis is not equivalent to a cure, but it’s often the first step in managing your symptoms and improving your quality of life.

Looking back, there were a range of signs and symptoms throughout my adolescence and adult life that I can now trace back to my hypermobility. Yet the lack of accessible information about hypermobility and the chronic pain it led to meant that I lived for years believing that pain and discomfort were just facts of life. Here are some of the symptoms I now know are (or were) related to my hypermobility:

Digestive problems – My digestive problems and IBS symptoms started at the age of 12. Although there’s a lack of research in this space, there is a clear correlation between hypermobility and gastrointestinal issues. Medical professionals believe it’s because hypermobility weakens the muscles, including those in your digestive tract, that this is the case.

Stretch marks on skin – Also at 12 I began to see stretch marks on my skin. Although stretch marks are very common for a number of reasons, it’s worth being aware that they can indicate hypermobility.

Heat and cold sensitivity – Ever since I was a teenager I have had issues with extremes of temperature. It used to always center around heat issues – I would faint, have heart palpitations and headaches – but more recently I have been affected by the cold weather too, experiencing severe headaches. Temperature intolerance can be another sign of EDS.

Severe headaches and migraines – From the age of 18 I began to develop severe headaches and migraines. I did not know this at the time, but those with hypermobility have a predisposition to them. Unstable joints lead to poor head and neck posture, putting strain and tension on these areas which in turn can result in headaches and even spasms. Headaches can also be caused by the jaw misalignment associated with hypermobility.

Jaw problems can be a real issue for those with EDS. When I was 15 I would wake up every morning with my jaw totally locked: I’d have to open it myself with a loud crack! At the time I didn’t know what it was but now it makes total sense.

Heart murmur – It took collapsing on a tennis court on a very hot day, aged 38, to make me aware of my heart murmur. A person with hypermobility may have problems with “floppy” heart valves, which cause heart murmurs. Heart palpitations and noticeable extra beats can also be signs.

Lung infections – I have always struggled with lung infections but since the age of 38 I have had three serious bouts of pneumonia, which led to a chronic lung condition. A number of forms of EDS, particularly the hypermobile type, can result in asthma-like symptoms.

Chronic pain after childbirth – My chronic pain was exacerbated after I gave birth due to my weak ligaments and connective tissue. Though difficult to deal with, it was this experience which led to my introduction to Pilates, to help with muscular pain. Pilates is now a crucial way in which I manage my hypermobility symptoms.

It wasn’t until I was 42, however, that I put all the above pieces of the puzzle together. I had been seeing a physio regularly to help with my joint and muscular pain and one day she asked if I had any digestive problems. Her question confused me, as I had never previously heard of the link between joint issues and gastro issues. She had already confirmed for me that I was hypermobile, but this new idea lead me to research the other signs of hypermobility and EDS.

Suddenly, all the seemingly unrelated symptoms that heart doctors, lung doctors, ENTs and other medical professionals couldn’t connect, all fit together. My medical history over the past 30 years began to make sense.

You can’t underestimate the sense of relief caused by a diagnosis. Suffering alone for so long can make you doubt yourself and your pain and, although this shouldn’t be the case, a diagnosis feels like validation. It also made me seek out others in the EDS and hypermobility communities and it is here that I’ve met so many exceptional people and had some amazing experiences. I’d love the description of my symptoms to encourage others in their health journeys and remind them, whatever their condition or diagnosis, they are not alone.