First physio post diagnosis tomorrow - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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First physio post diagnosis tomorrow



I was diagnosed in may with eds hypermobility and was told I needed an echocardiogram as I have had lots of palpitations, dizzyness, light headed Ness and breathlessness after little exertion (some chest pain too)

No appointment yet but got a phone call from physio offering me a cancellation for tomorrow. I don't know what to expect. I was only diagnosed as had been having stomach problems and they're kot resolved. It seems really pointless and I'm worried the rheumatologist only cares about my hypermobility despite not having any real problems with it.... (I made a long post about it post diagnosis and I'm still not over it...)

Anyway, I have no idea what to expect?

I have an appointment with a different rheumatologist ext month so was trying to move past the horiffic last appointment and gt on but now I'm dragged back in the cycle of anger and sadness and confusion from before!

5 Replies

Different physios offer different help and approaches, but essentially they will check your current muscle and joint strength, then give you exercises to help strengthen them for the future. This is the perfect time to start doing them - before you lose the strength due to EDS. It is a progressive illness, so it may be that you are at an earlier stage before the muscle weakness happens.

It is usually a nice experience.

Hello there!

Ah, your story sounds so familiar to my own! I was diagnosed with EDS HT after ongoing problems with my stomach, too. Although its seems unrelated to EDS, the stomach can be (as it is in me) hugely affected by EDS. If your physiotherapist is anything like mine, they'll do a wonderful job of explaining how your stomach has become the way it has, as a result of EDS. Many people don't suffer from GI symptoms, so it can feel very lonely, but, there are some of us out there!

Best of luck,


in reply to Caitie

Thanks you.

My appointment got cancelled so waiting on a reschedule. I haven't seen anything online about how eds affects the stomach and no one's been able to explain so far.. I'm seeing a different gastro and rheumatologist in September and october (purely by chance not my choice) so I'm hoping to get abother perspective.

Thank you though, it's nice to know I'm t the only one. I'm ein treated like a medical mystery side show at a freakshow lately... xx

in reply to Nero13

I so totally sympathise !!! What problems are you having with your stomach? If you would like to email me, I'd be happy to tell you what I've had done as they took ages with me. It is so important to have support and guidance with all of this! You aren't alone xxx

Hiya Nero13,

I am sorry to hear you are going through the mill with EDS.

Rather than repeat the info here, I thought I'd be better to direct you to my answer to someone else's post, where I have put info which I think you may find useful.

The link is

If the link doesn't work, it's a reply to a post by notlob.

I know it's frustrating, and I do hope you get what you need. Best wishes from boombiddy.

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