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

Fantabulous

Re the Pilates mentioned by Pandora

Have been doing Pilates every week at a class since January 2009 and the difference to my joints is amazing. My Rheumy is ecstatic that I chose to do pilates, which now also really helps with the FMS too

shays_mum

Ok so i got the letters from the rhuemy today, maybe i was living in my fog world that day, but it seems i am being referred for intensive physio/podiatrist & a psychologist for EDS type3 (now to find specialists locally aarrgghh!!). I thought he was paying no attention, but he seems to have noted most of my points down (only missed my hugely swollen tendinitis foot & nothing asked about the pill/other pain killers). Even a mention of FM type symptoms......, now to sort out the other stuff with an unhelpful gp .
Thanks for all your stories/advice, tis nice to know one's journey is not always travelled alone xx
Fantabulous, thanks for the tip on pilates, will look into it once some of this pain/swellings have gone down......!

Trialia

Fantabulous, I've got that one to come... My father and grandfather both had HEDS: Grandad had early-onset osteoporosis, as does my dad, and Dad also has Rheumatoid and had three heart attacks before the age of 50. I have HEDS too, have been very hypermobile since childhood and had it abruptly worsen during puberty. My younger sister also has some symptoms, though mild. I'm 24 and on DLA; so yes, I know where you're coming from with your family! Good luck.

shays_mum

Since the last time i was here just a quick update to let you know i am now going for intense physio every other week for the foreseeable future,
I have been awarded a blue badge, still waiting for the dla...., also my dd (8) has just been diagnosed as well .
I was wondering if i should get her statemented? or if anyone has done this with their little ones?, she is already complaining of joint pains, no learning difficulties - its like a re-run of my life, but this time around its not growing pains its EDS3!!.
Any advice is much appreciated, thanks in advance

Trialia

I would get her statemented so that you can at least show it to the people at her school(s) so they don't harass her about things she has a very difficult time doing in P.E. - and find out if there are some stability exercises she can do to improve the strength of her muscles (without hyperflexing her joints) now so that she won't subluxate/dislocate so much later. I had joint pains at her age too, but everyone wrote those off as growing pains - now I know better!

shays_mum

Trialia wrote: »

I would get her statemented so that you can at least show it to the people at her school(s) so they don't harass her about things she has a very difficult time doing in P.E. - and find out if there are some stability exercises she can do to improve the strength of her muscles (without hyperflexing her joints) now so that she won't subluxate/dislocate so much later. I had joint pains at her age too, but everyone wrote those off as growing pains - now I know better!

Me too Trialia, here i am 30 years later & a wreck!!. I think i will go down this road, but i am thinking if the school say she doesn't seem to be perceived to have any probs maybe they won't take me/her seriously..., but your right i need to think of the future & not only the short-term, thanks! x

shays_mum

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SingleSue

Trialia wrote: »

I would get her statemented so that you can at least show it to the people at her school(s) so they don't harass her about things she has a very difficult time doing in P.E. - and find out if there are some stability exercises she can do to improve the strength of her muscles (without hyperflexing her joints) now so that she won't subluxate/dislocate so much later. I had joint pains at her age too, but everyone wrote those off as growing pains - now I know better!

It's what caused my guilt, for years, eldest's pain was being written off as growing pains by the doctors.

Now, of course, he subluxates and dislocates at the drop of a hat.....

shays_mum

So did any of you gals get statemented for yourselves/kids?, from what i have been reading, its going to be an uphill struggle .
Singlesue, this is my worry as well, if i don't get this sorted now, the same will happen to my DD, apparently girls are more prone to the bendies when they reach puberty......., i can def say attest to that!!

Aputsiaq

shays_mum wrote: »

Thanks guys for your experiences , maybe i should not be so quick to devalue the help of the pain-clinic, apparantly the Dr was not sure if i was in enough pain, as to whether the pain clinic would see me!!
The prob with medication is i react badly to the co-proxomals/morphine based meds, i have seen 3 major ops with paracetamol alone!
Ok so what if i know was to tell you this Dr is a super-duper specialist in this field..............?!, is it all in my head, if the physical symptoms are there??. He actually asked me "if things are so bad, how do you cope with kids/work/100 mile commute every week?, like i have a choice in the matter!! x

3 major ops with paracetamol alone? Because you have a reaction to morphine based meds?
What about the 100's that dont rely on morphine derivities?
Perception is definitely "in our heads" and the doctor was merely suggesting that you try the pain clinic as they can help you to change how you see pain and how you deal with it.
We do come back to the same old argument that someone who is in so much pain cannot drive or cannot work. When someone comes along who says that they do these things it does make you wonder, How?
The fact is that you do manage and your doctor knows this and so therefore does not understand how the pain can be that severe. Hence his suggestions.
Which doctor is this that you saw?