The (not so old) Crocks Cafe

Trialia

Glad to hear it Oscar.

*needs ice-cream, and is tempted to get rocky road...*

Indie_Kid

Oscar - enjoy!

suep

I am still around, just been lurking as I havn't had much to say. I'm going to stay with my Grandparents for a couple of days tomorrow, sort of keeping an eye on them for my aunt who lives near them while she's had to go away as they are both not in the best of health at the moment. My Nan has a laptop ( shes in her 80's bless) so I can still get online, and when I manage to work out how to work this Blackberry that my daughter talked me into getting today I will be able to get online with that too ( hopefully) so I'll be around.

I've never had an mri, so cant help there, sorry Sue, best of luck though.

bigzippy

*delurks and waves*

Thanks for teaching me the secret handshake Tria

Has any of you actually been offered anything useful in the wake of an HMS dx? Physio maybe? My consultant was pretty opinionated (apparently I've *allowed myself* to "fall into the disability trap") but wasn't forthcoming with offers of help. Strangely.:cool: If he really thinks most of my pain is from being hypermobile (I did point out the flaws in his logic) then I need to prove myself or him wrong-and i figure the best and safest (and recommended in the information HE gave me) way to try and do that is with physio. Obviously he didn't offer a referral for that though. That would just be daft talk.

SingleSue

Eldest son was initially offered physio for HMS....and is still getting it with the correct diagnosis of HEDS.

I've only ever been referred for physio, as and when needed...but then years ago it wasn't really seen as a problem and the realisation that support is needed is a pretty new one.

Youngest has never received physio for his HMS, although he did see an OT who advised on exercises (in a small way, she had been a physio before) but mainly on supportive structures to help him walk, for example, Pedro boots, leg splints etc as his ankle joints were so hypermobile.

So a bit hit and miss really!

Indie_Kid

What's the difference between HEDS & HMS?

SingleSue

This may help....

http://www.hypermobility.org/painandhms.php

Still working it out for myself at the moment though!

Trialia

Zippy, physio is about all I've ever been offered to help, though I do know the smaller joints can be braced, but my hips and shoulders are more problematic so that wouldn't be much use to me. Physio isn't, either - only made my joints more unstable. It works for some, not for others.

As the article at hypermobility.org says, hypermobility-type EDS and HMS are very similar, and some of the experts think they're just the same thing with differing levels of severity.

SingleSue

Just got back from my physio....well the physio for my shoulder so I thought.

She worked on my back instead - apparently there is some loss of sensation on the left leg and a weakness on the right leg and she agreed with the referral for an MRI. She has given me some exercises but said that it probably will never be completely right because of the hypermobility and the extreme arch.

So shoulder had to wait...not so worried about that, it is more annoying because of loss of function than painful.

Jojo_the_Tightfisted

DD announced yesterday that she 'isn't allowed to do gymnastics' because of her hypermobility. ???? Found out that she told her dad she wanted to join gymnastics club when she starts high school, but her dad said she shouldn't because she'll get hurt.

News to me, and I would have thought that my opinion would have counted on this - we both have HMS, me more so, and I know that, as long as the teacher is aware, it can actually be an advantage for gymnastics. He was very good at it when a boy as well, so I'm not sure where this 'I don't want you to do this' comes from.

Her primary teacher is a bloke who she is certain has HMS himself, as he knows exactly what she is capable of, as discovered on the first bending/stretching class he took, when they were the only two people in the hall who could practically fold in half sideways! When she told him she was hypermobile, he said 'I can see that and I've already mentioned it at the office - I was going to ask your Mum if she knew as well'. He hasn't ever treated it as a problem, just a slight adaptation 'when you reach down, keep your knees soft, DO NOT lock them - Megan, that means you as well'

My one concern is her future high school states they must wear plimsolls indoors, which aren't supportive enough for her ankles. I wish I didn't have to make her show up as different by insisting on trainers (which they expressly state are not necessary - oh yes they are!), but I am not prepared to get a phone call saying I need to come and take her to hospital because she's just sent her shinbone through the side of her foot.

I shall leave it until she gets to the school - if she still wants to join, there shall be an executive decision made, as the person who pays her bills is me. But if not, she has earmarked an alternative 'safe' occupation - trampolining. Only the prospect of falling 15 foot to worry about, rather than being careful to not lock out her knees!

Yup, you can tell she's related to me.


***

Sue, it's normal to be nervous about MRIs - but they are very experienced with anxious people and I am sure that, if you remember to keep breathing deeply, you will be fine. I've had two, plus a few CATs and, they were - well, not as bad as I thought they would be (although at the last one I shot out of there like I was jet propelled).

Interestingly enough, after the one concentrating on my neck more (I could feel the blood in my head being pulled around during that one - it's a funny feeling!), my nightmare headaches stopped abruptly, having had them constantly for about 18 months. I had one when I went in the machine and it had gone by the time I came out again.