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Ehlers-Danlos Support UK
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Hypermobility or more?

Hey, just to give a round up I'm 21 and I've suffered from joint and muscle pain, stiffness and locking etc pretty much since I can remember but I was only recently formally diagnosed with having Hypermobility Syndrome. The rheumatologist I saw spoke to me about genetic testing and I'm wondering if it's worth asking my GP about it as aside from my joint problems, I've always bruised easily, I've shown symptoms of IBS, I have frequent hives outbreaks, the joints in my fingers are swollen (I'm awating an ultrasound on my hands to see if it's a type of arthritis and I had an arthritis blood teat and it came back negative but apparently it can also affect the fingers and that's more of a visual thing?) and lately I've also been experiencing really bad migraines which I've heard are symptoms of EDS and also other conditions! I've also always experienced itchiness, like all the time and I'm not sure if that's normal or not but it's frustrating! Is it just my hypermobility or should I delve a little further and find out if something else is wrong? All advice wanted and appreciated! Thank you :)

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Delve further; if you’ve an autoimmune issue going on there are medications and management available that will make life better and also limit any progression

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Hi Pixie,

I think if your Rhuematologist was discussing genetic testing he's knowledgeable about EDS etc. Personally I would revisit him if it's an option. Ask him his thoughts.

I wish you all the luck in the world! Be well. 🌻

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It sounds like mast cell activation syndrome, a comorbidity of eds and hsd. Not easy getting a diagnosis in this country but check it out and I can really recommend Claire Smith's book

redcliffhousepublications.c...

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Thanks for the post and the replies, it has helped me to think about going back to GP, I have all that you have but no one seems to put them together, they only treat each bit. Hope all goes well, go back to the consultant if you can and get the tests done if he is offering them.

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Hi pixie. I can relate to your symptoms, as can many of us with hEDS or HSD. Being hypermobile and having pain along with other symptoms can be very difficult, but you can learn to manage it. Having a correct diagnosis will allow you to have other investigations for various symptoms and where necessary enable you to receive appropriate treatment. Hypermobility syndrome as you've been diagnosed, sounds to be an outdated term, and you would now be given Hypermobility spectrum disorder or if there is a family history then it would be hypermobile ehlers danlos syndrome. My 22 yr old son and I both have hEDS. We were diagnosed by a private hypermobility, EDS specialist rheumatologist, after no other Doctor recognised the nature of our symptoms and illness'..

I would suggest you see the Doctor again and ask for clarification of your diagnosis. They obviously have some knowledge but are perhaps not up to date with the terminology? All this is available on the new EDS GP's toolkit for Doctors to view online rcgp.org.uk You could ask to see a geneticist who will test for EDS, but unfortunately there is currently no test for hypermobile EDS type. But they would test for the other EDS syndromes - which it sounds unlikely you have- and they will give you answers.

Let us know how you get on, and if you need any help.

Best wishes xx

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