Hypermobility-What if you were told....?

candygirl

Adaline wrote: »

Hi Candygirl,

I have HMS, and Ehlers Danloss Hypermobility. I've had eye problems since I was a child, very short-sighted and with a divergent squint in both eyes. I had the squint corrected by surgery some years ago, but still have problems focusing (my eyes move all the time). I was told this can happen with hypermobility. Also, I was told there was a bigger increased risk of a detached retina. It'd be worth mentioning the HMS to the eye specialist, if they've not been told. Hope that helps!

thanks hun :A

ash4becks

shays_mum wrote: »

Hi ash4becks, hope your feeling better?, i think the heat combined with the weekend don't help!
My face is swollen all the time - one big moon face , but hey!, it irons out all the wrinkles
I think a trip to the gp might help things, otherwise lots of rest - my fingers are so swollen can barely type , till the next time get better soon eh! x

cheers to sh, too i did go to the gp was on phone at 11am appointment was 11.15 think receptionist wanted me stright in, but iam very hacked off doc took temp, blood pressure and listened to my chest and decided he could see nothing wrong with me !!! i dont feel great at all iam achey all over and heavy and so tierd still swelled up dispite what the doc said was 1st time i had seen him , the rhemy appointment is next tues so he basicly fobbed me of and told me to wait till then:mad: went to shop were iam regular she thought i have been in a car accident as i have scratch on my face after my dog ella was a bit to happy to see me but she sore i was swelled up to even my voice is off and my tounge but i have no pain like you would with a sore throut and its not allergy either as i have a bad dust allergy , why dont they just trust you after all you no your own body !

bumped into mams best mate she was shocked when she sore me wrist splints and all not seen her in a while though, had to do a few jobs got a nice tax rebate of 114 pound of years ago and what i have wanted forever was my disablity bus pass :T
iam even more tierd but was inportant was done as sooner i can get swiming to help me hopfully feel better

ellabelle39

shays_mum wrote: »

Ellabella, i would try to change my gp. My gp wouldn't let me get a diagnosis for years, he kept saying " all your familiy has bad joints"!, in the end in severe pain i had a massive rant at him, threatening i would go to the pct all sorts - can't remember the half of it & it worked.
When i suspected my dd had eds3, i bypassed the gp & went to the health visitors (though she was 8) & told them i was concerned & the community paed saw me within a week - he was from the pct. The paeds said it went without saying that my daughter should be seen asap to ascertain how bad things were & what steps i needed to take to make things easier for her. He is coordinating all her care & even asked if i was been taken care of, or he would see to that as well!!
If your gp is c**p, bypass them!!
HTH

Hi Shays_mum.
Thanks for info.
Can you please explain how eds3 differs from hypermobility syndrome? This may be relevant for my daughter.
Cheers

Trialia

candygirl, what Adeline said. For you and ellabelle, the only real difference between HMS and EDS-3 is the degree of severity. Many of the experts say that there is no real difference and refer to them interchangeably with one another.

And yes, EDS hypermobility type, which is the most common form of EDS, can quite often have eye problems along with it. I have slowly deteriorating eyesight and astigmatism in one eye, and have been wearing glasses since I was four years old.

shays_mum

Hi Ellabella have a looksy:
http://www.ehlers-danlos.org/index.php?option=com_content&task=view&id=4&Itemid=5

Would agree with Trialia, they are thought of as the same, but the above gives you a break-down of all the different EDS types.

My dd has pain no denying that, but i am trying to put things into place so she won't suffer as much ( i hope!!) when she is older, but there is guarantee with this type of disorder. I will be sending her to gym/ballet & getting her eyes tested asap, as i have not done that yet!.

HTH