Videos, Links, Medical Advice on EDS hypermobility POTS, IBS and MCAS
You're a zebra!
It can be bewildering and overwhelming to be presented with the EDS or POTS diagnosis, despite the exhilaration of finally being validated by the medical profession. But you're a zebra now and we look after our own! Our mascot is the zebra - 'just because you hear the thunder of hooves doesn't mean it's horses.' This refers to the fact that we are so often misdiagnosed, because all the usual signs and symptoms don't actually apply to us. So many tests don't account for our symptoms and we feel like a fraud or hypochondriac for insisting something is wrong. Pain, for instance, is often from over-extension and hyper-flexibility, (so giving us stretching exercises can make things much worse) and neuropathic pain and spasms cannot always be attributed to nerve damage. IBS, Endometriosis, insomnia, cramps, dizziness and fainting, low blood pressure etc. are all part of the constellation of symptoms associated with EDS and POTS but can seem like heart failure or even cancer before you are properly diagnosed. This is a RARE genetic condition. 1 in 10,000 people have it. It's important to get GOOD INFORMATION to help you manage it.
I will add to this page as I uncover more useful stuff. I'd appreciate any comments you have about your experiences or information you think will help other zebras.
So, where do you go from there?
EDS, including all the connective tissue disorders, POTS and other stuff that goes with these genetic conditions (such as MCAS) affect every day functioning. In my post about Why EDS and POTS is like and evil car I describe, in an analogy, what it's like to have so little control over your body. That is a big part of how I feel sometimes, but there IS help out there for you! And there are steps you can take to change how your body responds. You do have the power to improve your everyday experiences and reduce pain and discomfort as well as your general health and immunity.
It's taking me a while to sort through:
- which advice is helpful
- who is just selling something
- who actually understands these complex conditions
- who really cares
- how I can improve how I feel, physically and mentally
- what the symptoms actually mean
- how to accept what my body does
- how to manage my symptoms properly
- how I am unique to other sufferers and what we all have in common
- who to turn to in dark times
Here are some helpful places to start looking:
- https://www.ehlers-danlos.com/about-us/ This is the peak body for this group of genetic connective tissue disorders. They have videos of conferences which are AWESOME resources. You can also follow on instagram and facebook.
- The UK's NHS has some good basic info to help you understand https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
- Dr Chris O'Callaghan, the foremost expert in Australia on dysautonomia and related conditions: https://vimeo.com/110989159 He is a consultant at Austin Health hospital in Melbourne https://www.austin.org.au/page?ID=128 He diagnosed me through a lengthy questionnaire and interview process in conjunction with a review of my medical records.
- The Australian POTS Foundation has excellent resources: https://potsfoundation.org.au/
- Johns Hopkins explains POTS
- A VERY helpful short video about POTS http://www.dysautonomiainternational.org/page.php?ID=30
- You can connect with others here: Instagram has been a wonderful, daily help: https://www.instagram.com/awarenessforpotsies/?hl=en
- A giggle a day... I have found a lighthearted approach to POTS has been most helpful for me, otherwise I get too depressed and resentful, so I follow Laura on instagram: @potsie_probs makes me laugh every day!
- The Mayo Clinic has great resources on Ehlers-Danlos Syndrome Mayo Clinic
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