sleepy but vindicated

[Sleepybear987]

It took 3 years but I'm a step closer to finding answers

I went to rheumatology and the lady said there's a high chance I have hypermobility (EDS). We're ruling out autoimmune diseases but we're leaning there.

I did some research and it also turns out that EDS and arrythmia are linked so this might explain the issues I'm having with my heart: kentcardio.com/hypermobile-....

The downside is that there's no "cure" for EDS, it's just pain management and physio (which I might have to consider going private because the waits are 2 years minimum...).

Regardless, I am just here to say thank you. Even in the disagreements, you all have helped me understand what you're going through and you how it could be related to me. Even some stories about how doctors have misdiagnosed you, it made me realise that I should trust myself. Trust my gut because I know my body.

(the worser news is my legs are now giving out at the best of times which means I think I need to fast track therapy. and my fatigue is a lot worse too. But we're doing alright)

[AlfredV]

A lot of people with EDS also find they have mast cell issues (which can give rise to joint pain and other symptoms). I don't have EDS but I do have mast cell problems making me very sensitive to foods high in histamine.

It might be worth trying to restrict high histamine foods for a while and see if you notice an improvement.

[Sleepybear987 in reply to AlfredV]

you're gonna laugh but I was eating a banana as I was reading this 🤣🤣🤣🤣

I have a really restricted diet as it is, but you know what - anything will help right! I might try antihistamines as well to see if that gives me any relief. Thank you for letting me know!

[Dingledaw in reply to Sleepybear987]

Hope this helps:There's a Sighi list of high histamine foods which seems to be the most used among people with Long Co -vid.

Also EDS and POTS are common co-occurring conditions.