Ehlers Danlos Syndrome- Under my Zebra-Ella

Ehlers Danlos Syndrome-

Under my Zebra-Ella

Whenever people ask me about my chronic pain… I find my answers to be… how shall I put this… Lackluster. It’s a complicated thing, these diseases which have changed my life in just a few short years. Its complicated like a set of invisible dominos you can’t see, and that most people doubt even exist. So, I am gonna try and explain this thing, this invisible thing, which most people doubt exists, in a way which is easy to understand.

Easier said than done, especially when most of the medical community is still in the dark about this stuff.

P.s- I am not a doctor, this is my explanation of these conditions based on my personal experience. Every single case of these invisible chronic illnesses is unique, so make sure you always consult a doctor before trying any medication or treatment.

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My Zebra-Ella

I had yet another diagnosis this week, and when I was sitting opposite the consultant, he used a term I hadn’t heard before, but it kind of makes sense. The term- Umbrella Condition.

An Umbrella condition is one which causes a bunch of other related conditions. So, it’s the main source of the problem, the overarching problem. If you like it’s the evil mastermind running the operation, and the other conditions you suffer, though horrible in their own special way, are merely little minions of this main big bad. My big bad, my umbrella so to speak, is Ehlers Danlos Syndrome type three. This is also known as Hypermobile Type-Ehlers Danlos Syndrome and is known as the Zebra disease not only because it causes stretch marks for sufferers, but also because when a doctor hears hoofbeats they are taught to think horses, not Zebras. But Zebras do exist! I should know because I am one!

Ehlers Danlos Syndrome unlike many related conditions such as Fibromyalgia and Chronic Fatigue Syndrome etc is genetic. I have a faulty gene. This gene is responsible for collagen production. Connective tissues made up of this collagen provide support to skin, tendons, ligaments, blood vessels, internal organs and bones. The main symptoms of EDS- Hypermobile type- are frequent subluxations and dislocations of any and all joints in the body which as you can imagine hurts like a freaking bitch.

Other symptoms of hEDS can include:

  • ·       Tiredness and Fatigue.
  • ·       Fragile Skin
  • ·       Poor Healing
  • ·       Brain Fog and trouble concentrating
  • ·       Digestive problems
  • ·       Bladder weakness
  • ·       Easy Bruising
  • ·       Joint pain and clicking joints
  • ·       Organ Rupture
  • ·       Mitral Valve Prolapse
  • ·       Heartburn
  • ·       Hangover like symptoms.
  • ·       Costochondritis (Inflammation of the rib cartilage)

Co-morbidities-

This condition changed my life, but the problems I have don’t stop there, because though EDS is my umbrella condition. My comorbidities (A.K.A little minion conditions) include-

Fibromyalgia (FMS)- A long-term condition which causes pain all over the body, increased sensitivity to pain, muscle stiffness, difficulty sleeping, migraines, and irritable bowel syndrome.

Reactive Hypoglycaemia- This is where blood sugar levels fall drastically low after a meal due to overproduction of insulin. Symptoms include- double vision or blurriness of vision, unclear thinking, lightheadedness, excessive sweating, heart palpitations, insomnia, numbness or coldness of the extremities, muscle twitches, anxiety, depression, nausea, panic attacks, severe fatigue, or coma.

POTS (and Dysautomnia)- POTS stands for Postural Orthostatic Tachycardia syndrome. This is a condition where lax veins (because of crappy collagen in my case) cause blood pooling during sitting/laying down. On rising, the heart beats abnormally fast in order to compensate for a blood pressure which is too low. This can cause, fainting, dizziness and heart palpitations or a racing heart. This condition is a part of a larger problem called dysautomnia, whereby the Autonomic nervous system (this is responsible for the things we don’t think about, breathing, heart rate, digestion etc) which consists of-

  • ·       The Sympathetic nervous system
  • ·       Parasympathetic nervous system
  • ·       Enteric nervous system.

These three systems are responsible for our fight or flight response and our rest and digest response. However, in a person with Dysautomnia, they don’t balance quite right, which can cause- Digestive system problems/gastroparesis, lack of temperature regulation, poor sleep quality, bladder weakness and of course POTS.

Who knew a faulty collagen gene could cause such havoc over so many systems? Not all EDS sufferers will have the same experience, but just this one weak link within my genetic code has meant I can’t work, live in constant pain, battle daily fatigue, have to watch what I eat, how much I drink, and how much I take on during the day.

It’s changed my whole life, in some ways for the worse and some for the better, like the fact I ended up as an author because I needed to work from home. All I know is that every time I think I have a handle on this thing something new pops up, and it’s all I can do to adapt to whatever EDS tries to throw at me next. In subsequent posts, I will be discussing these adaptations, things I’ve learned, how I stay positive and just general stories about my life battling with these conditions, but for today I wanted to make clear what exactly I suffer from and why.

It’s a lot to take in I know and this is in no way an in-depth look into any of the listed conditions, for more information on any of the listed conditions, contact your doctor.

Thanks for reading!