Chronic Pain, Disability, Disability Awareness, Ehlers-Danlos Syndrome, health

Ehlers Danlos – More Than Just Bendy

Ehlers-Danlos Syndrome Type 3/Hypermobility EDS (hEDS) is a life-long genetic disorder, which is caused by an abnormal mutation of an unknown gene. It causes a fault in the collagen, which is the glue that holds our bodies and organs together causing it to become weak and fragile affecting the whole body. Collagen is found in over one third of the human body, meaning that in hEDS, everything is compromised as a result of the mutation. 

When people talk about Ehlers Danlos, the most common symptoms that are spoken about are the dislocations/subluxations and the pain and fatigue caused by our bodies trying to hold our loose joints together. However, Ehlers Danlos causes so many more symptoms than just these three, so for EDS Awareness Month I thought I would shed some light on some of the more unknown symptoms that come with having EDS. 

Delayed Wound healing and Abnormal Scarring

One of the most common skin issues with EDS is delayed would healing and abnormal scarring. The Ehlers Danlos Society recommend that stitches should stay in for longer than usual in order to improve the healing process but unfortunately this rarely happens. Personally, my skin takes forever to heal and will scar from the slightest scratch. The pictures below are of the same wound; 1 week after the stitches came out, 6 months later and then today. You can see that the wound went from a neat, straight scar to a wide scarwith paper thin skin on top.

Easily Torn Skin

Along with the above skin issues, easily torn skin is another extremely common symptom of EDS. For those of us with EDS, even just removing a plaster can cause our skin to tear open. Personally, this is one of the most irritating symptoms I have as my skin will tear open at the slightest touch so I am constantly covered in scars. 

Resistance to Local Anaesthesia

This is probably one of the most unknown symptoms but the majority of people with EDS suffer from a resistance to local anaesthesia. Research has shown that Lidocaine and Procaine are the least effective in EDS patients, with Articaine being the most effective (and even this was only proven to be effective in 30% of people with EDS). Around a year ago I went into my GP surgery for what was supposed to be a 10-minute appointment to have a minor op. I ended up being in there for 45 minutes due to the local anaesthetic not working. Once my GP finally managed to get enough anaesthetic into me to enable him to start the procedure, he then had to stop to give me more when the numbness wore off halfway through. 

Costochondritis

Costochondritis is inflammation of the cartilage that connects the breastbone to the ribs. The pain caused by it often mimics the symptoms of a heart attack, which is terrifying when it first happens. There is no cause and the pain usually worsens when you breathe or cough, hence the mimicking of a heart attack. I remember when I first experienced Costochondritis at around the age of 14, I honestly thought I was dying. Luckily, as I’ve got older, I experience it less than I used to but every now and then it will come back with a vengeance. (If you do have EDS and experience similar symptoms but haven’t had a diagnosis of Costochondritis then please do seek medical help to ensure it isn’t anything more serious).

Postural Orthostatic Tachycardia Syndrome (POTS)

POTS is an extremely common comorbidity of EDS. It is caused by an abnormal response by our autonomic nervous systems and it causes symptoms such as palpitations, dizziness, nausea, breathlessness, headaches and fainting. To be diagnosed with POTS, your heart rate must persistently increase by at least 30bpm within 10 minutes of standing up. Although POTS is a common comorbidity of EDS, it can be difficult to get a diagnosis. Personally, I was told that I most likely had POTS 6 years ago but it still isn’t listed on my medical record due to not being able to access a Tilt Table Test. You can see from the photo below that my heart rate rose by almost 50 bpm within just 2 minutes of standing up from the sofa and this was accompanied by extreme dizziness, nausea and loss of vision.

Gastrointestinal Issues

Every single person I know with EDS has some sort of gastrointestinal issue and research conducted by The Ehlers Danlos Society shows that those with hEDS often suffer from GI issues such as indigestion and IBS with the most common symptoms being; abdominal pain, nausea and constipation. Unfortunately, there are also a number of hEDS patients who suffer from more severe GI issues such as, Gastroparesis, which is a chronic condition where the stomach is unable to empty in the normal way. 

So, whilst EDS is known as a condition that causes frequent dislocations and joint pain, it is far more than just being bendy. Every single part of the body that is affected by EDS in some way and that is why it is so vital that people are diagnosed as early as possible, in order to get the help they need to be able to manage their symptoms. 

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