Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

My EDS Story

I haven’t written a blog post in over a year, I can’t really explain why as I’m not entirely sure myself but it’s 2020 now and I finally have the motivation to start blogging again. 

Over the last few months I have been thinking about my life with EDS so far and thinking about how I got to where I am now with all the symptoms and comorbidities of EDS so I thought I would put it down in writing. This is by no means a full account of my medical history but more a reflection of the parts of my health at certain ages, that have led to who and how I am now.

1 to 7 years old:

I didn’t really have many standard symptoms of EDS between the ages of 1 to 7.

Other than being extremely tiny, having Delayed Visual Maturation as a baby and suffering from a number of ENT issues, my early childhood was pretty normal. I pretty much just spent my first 7 years of life running around without a care in the world, waving at anyone that would wave back at me. 

One of my earliest memories of what would become countless hospital trips was when I was 3 and my brother and I were messing around. Ian stole my beloved toy and whilst attempting to get it back, I managed to walk into a door. From memory, I didn’t hit the door particularly hard but it was enough for me to completely split my head open right above my left eye. Looking back, this was probably the first sign of the skin issues EDS would cause me. 

Other than ENT issues and fragile skin, the only other symptom of EDS I had between birth and the age of 7 was a sensitivity to things touching my skin and a constantly high body temperature. By 6 years old, everything I wore was uncomfortable and my skin would constantly burn and itch to the point I would make my poor mother spend hours cutting out every kind of label from any clothing just to try and reduce the burning feeling. Add to this the fact that I always felt hot and my poor parents were driven to despair by my reluctance to actually get dressed in the morning. 

I remember going to Lapland aged 6 and throwing a tantrum pretty much every morning because I was so hot, I didn’t want to put the thick snowsuit on. Being only 6 years old, I hadn’t quite grasped the fact that I couldn’t go out in a t-shirt in -10 degrees…

8 to 10:

At the age of 8 I started struggling to breathe properly and so I was referred back to the Paediatric ENT Consultant who I saw when I was a baby. He said that I had such a tiny nasal airway that I almost didn’t have one at all and so referred me for surgery to create one and enable me to start breathing through my nose.

During this timeframe, I also started getting headaches almost every day for what seemed like no reason. I remember going to the school medical centre constantly complaining of a headache and being given a cold, damp towel to place on my head for 15 minutes or so (did anyone else’s school nurses believe that a wet towel could fix almost any illness/injury?) and sent on my way but nothing ever worked other than going to sleep. 

It turned out that my chronic headaches were related to one of the main criteria for diagnosing hEDS; Dental Crowding. My jaw was so small that my teeth were all crowded together and that was causing my headaches. My dentist suggested putting a brace at the back of my teeth to push my jaw out and allow my teeth to naturally fall into place. Luckily, my parents agreed to try the brace out and within 18 months my jaw had widened, my teeth had fallen into the right place and my headaches and were almost completely gone.

11 to 15:

From the age of 11 to 15 my knees started to sublux. A subluxation is a partial dislocation, where the joint begins to dislocate but corrects itself before a full dislocation occurs. A subluxation can be just as painful as a dislocation; however, people usually recover from them much quicker.  

My knees first started subluxing when I was playing netball at school. I remember going to pivot and feeling my right kneecap move out of place, but it happened so quickly that I wondered if I had imagined it. I had heard of people dislocating their kneecaps as my mum had dislocated hers before but I had no idea that joints could partially dislocate. After about the 4th subluxation, my dad took me to see my GP who told me that I was just suffering from growing pains and that the pain in my knee would subside after a couple of months. 

However, the pain never went and both kneecaps continued to sublux, so I ended up seeing an orthopaedic surgeon who told me that I had a shallow trochlea groove, meaning that my kneecaps could easily slip out of place. He referred me to physio to strengthen the muscles around my knee and told me to stop all sports except for swimming. After subluxing my knees regularly from the age of 11, it wasn’t until I was 14 that I dislocated my left knee. 

At the age of 15, I started feeling dizzy and losing my vision briefly on a regular basis whenever I stood up after sitting or lying down for a while. This is something that unfortunately has never gone away; however, I now know it is due to Postural Orthostatic Tachycardia Syndrome (POTS). POTS is when your heart rate rises more than 30bpm upon standing and is usually accompanied by symptoms such as; palpitations, lightheadedness, nausea, fatigue, struggling to breathe, headaches and in some cases fainting.

16 to 17:

My journey to diagnosis began when I was 16 after I went to see a dermatologist about a patch of skin on my chest that had become discoloured and rough. As much as I was confused initially, I owe Dr Harrison everything for actually connecting the dots and not stopping until she figured out what was causing all my health complaints (I didn’t end up getting diagnosed until much later but Dr Harrison was very much in my corner fighting for me all the way).

18 to 22:

Whilst my journey to diagnosis was still ongoing, I started feeling constantly exhausted to the point that I could barely concentrate on a TV programme.

After suffering from extreme exhaustion for around 7 months and spending the majority of a family holiday to Australia asleep, I ended up being diagnosed with ME/Chronic Fatigue Syndrome in my last year of A-levels. I ended up missing around 6 weeks of school due to severe exhaustion and simple illnesses knocking me for six. 

Despite suffering from ME, I finished my A-Levels, got diagnosed with EDS and went onto University. Unfortunately, my body wasn’t quite onboard with the whole University thing and continued to throw me curveballs to try and get me to leave. In my first year I developed an intolerance to alcohol (not that I drank much prior!), which wasn’t entirely conducive to the whole ‘Freshers’ thing (I’m pleased to report that the alcohol intolerance was short-lived & my body eventually realised what it was missing out on and I can now enjoy the occasional gin…).

At 19 my kneecap dislocated again and I ended up tearing all of my ligaments bar my ACL in the process. Around the same time my ankles began to sublux and my back started to hurt whenever I stood up for too long. 

For the next year, my health was pretty stable (well as stable as things can be when you have EDS). I was in remission from ME and knew exactly what to do in order to prevent a relapse and I was able to exercise most weeks without being in excruciating pain. 

Unfortunately, this was short-lived and just a couple of months after my 21st birthday I started struggling to breathe no matter what I did.

After around 18 months of constant hospital admissions, Doctors appointments and tests, I was told that my breathing issues were a result of Hyperventilation Syndrome (HVS). Usually HVS is a result of underlying anxiety, however, in my case it was caused by never really having an airway. I was referred back to the Paediatric ENT Consultant I saw when I was little as well as a Respiratory Physio. My Consultant explained that my septum was deviated, meaning that I had no left airway. Because of this I had learned to breathe through my mouth, which had served me well for most of my life until I developed a bad chest infection. Apparently, chest and lung infections can cause long-term hyperventilation (the things you learn when you have EDS…).

23 to 24:

The last 2 years of my early twenties was definitely a turning point in my life with EDS. For most of my adult life, my symptoms mostly came and went; dislocations & subluxations would heal, the pain would be easily relieved for the most part, my breathing was fixed by surgery etc. 

That was until around the age of 23, after leaving University. I left University in May 2017, went on a holiday to Disney World and started my new job without many issues. And then one day I woke up with back pain that I can only describe as feeling like someone had put a clamp on my spine and was constantly tightening it. Although I had suffered with pain for a number of years before this, there was one major difference; this pain did not go away and nothing relieved it. Don’t get me wrong, it doesn’t always feel like my spine is in a vice like grip, sometimes it just merely feels like it’s on fire so that’s a nice change…

This was the beginning of EDS taking full control of my body and the pain slowly spread through every part of my body. Whilst at the time I thought I was coping pretty well; I was actually just getting more and more depressed and looking back I’m not really surprised. At the time of my life where I should have been enjoying myself, I felt like I was watching someone take an axe to my body, piece by piece and there was absolutely nothing I could do. The back pain turned into severe plantar fasciitis in both feet pretty quickly and from there it spread through my entire body and that’s where I’m at today

So, there you have it; my EDS story…

It’s now 2020 and it’s been 7 years since I was officially diagnosed with EDS. The symptoms may keep coming but I am definitely in the best head space that I have possibly ever been. My health is worse than ever and potentially may not get better but I have learnt to accept help when I need it and put myself first. Gone are the days of pushing through the pain in case people thought I was weak.

The next couple of years are going to bring a whole new challenge, with major knee surgery happening towards the end of the year but I am ready (I think…) to see what the next chapter of my EDS story brings. 

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