Dear Diary: EDS & POTS

Hiya! How is everyone doing this Tuesday morning?

I thought I’d give you all the low down on my current health situation. My health has been a topic of… let’s say “discussion”.. amongst family and doctors alike for many years now. I have recently been diagnosed with Ehlers Danlos Syndrome type 3 (the hyper mobility type) which is a rare connective tissue disorder. Not many people (or Doctors!) have heard of it so I would be very surprised if any of you have! EDS means that your joints don’t really like staying in place and often dislocate or sublux. There are a whole host of symptoms associated with EDS (like gastric issues, chronic fatigue, brain fogginess, hypoglycaemia  & sensitivity to toxic substances like bleach) which I am currently in the process of figuring out, and starting on many many supplements..

The diagnosis explains a lot of my previous health issues, like a bad back & neck and popping ribs out when sitting up or sleep to restlessly (oops) as well as various digestive issues. It’s a rare syndrome so I thought I would use this lovely platform I have to raise a bit of awareness about it, and maybe connect with others who have the syndrome. I’ll keep you all updated on my progress of discovering what it all means…

Having been diagnosed with EDS I have also been diagnosed with Postural orthostatic tachycardia syndrome (POTS) which is often seen as a secondary condition to EDS. POTS is a condition where your heart rate increases upon standing, often resulting in blacking out, fainting, dizziness and light-headedness. It explains for me why I often lose my vision when I stand up and quite frequently faint. POTS also goes hand in hand with Chronic Fatigue syndrome which I was diagnosed with when I was 13.

Whilst I get referrals through from my GP for specialist physios and Drs specialising in digestive issues with EDS I am continuing treatment on my very grumpy back and I’m on the FODMAP diet. This basically means I am a joy to eat out with.. no dairy, gluten, onion, garlic, legumes or artificial sweeteners… yup you guessed it, my friends love me! (No but really they are all very supportive and I think I provide the entertainment when I confuse all the waiters with my various requests to leave things out from dishes!!)

I’m feeling very grateful for finally having a diagnosis after 10 years of seeing various Drs, but at the same time it feels rather bitter sweet knowing that there isn’t a magic cure as EDS currently has no known treatment or medication. I’m very much looking forward to getting a handle on my symptoms and hopefully stop slipping discs and start being able to exercise again!

I would love to hear from anyone who has EDS or POTS or anything similar to see how you are getting a handle on the symptoms 🙂

Anyway I’m off to lie in the sun.. apparently that helps my back (Any excuse, eh!)

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2 thoughts on “Dear Diary: EDS & POTS

  1. It is good to finally have some answers, yes? Great to see you are ‘Earthing’. Some call it ‘Grounding’, not to be confused with ‘being grounded’. It is a true health benefit, regardless of what you call it. Check it out, you might like it. Years ago, YouTube had a wonderful documentary about Earthing. Are probably more now. Take care, keep smiling. ren
    PS-beautiful scenery!

    Like

    • It’s definitely good to finally have some answers after years of searching. I will definitely check it out – thank you so much for the suggestion I really appreciate it!! Hope you are having a good weekend. ☺️

      Liked by 1 person

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