Joint hypermobility disorders :

Sceard Lil Girl - - Posted by Femin3m (Femin3m), 18 August 2003

HI Everyone,
                    Im Real sceard coz im 15 and have HMS but it seems to be getting worse it started off just my fingers and thumbs but now its getting to the point that i cant even sleep!! i have an oppointment with a speaclist im oct.
        CAN ANYONE HELP ME!!
Kristy
Posted by Stacey (Stacey), 18 August 2003

Hi Kristy

All I can tell you is to do your research and be prepared for this doctor's appointment.  Also one thing I have learned is dont place all your hope in a doctor you have yet to see as it may not work out and you might have to look for another one.  Well its off towork for me now

Stacey
Posted by Shazinoz (Shazinoz), 18 August 2003

Welcome Kristy,
Please don't be scared.
You have HMS and it is getting worse, OK, then it is good that you are going to see a docotr but like Stacey said this docotr may not be able or willing to help you and then maybe he/she willbe wonderful, remember that HMS is a little known disorder and you need to try to find someone who knows at least a little about HMS. AS to not being able to sleep is this due to pain, injury or worry?? if it is due to pain the you need to see your GP or PCP or treating doc about somekind of pain medication, you may need a referral to a pian specialist or pain clinic if your pain meds aren't/don't work (but remember in a lot of people with HMS pain meds work very well). Don't let people think that because you are 15 you can't really be feeling pain as this is SO WRONG age has NOTHING to do with pain etc If you can't sleep due to worry then you  may need to talk to someone about your worries and fears about your HMS (a councellor or someone in the medical field of councellin (who councel those who have to adjust to life changing diagnosis's).
By the way when were you diagnosed (at what age)
If you can;t sleep due to injury (i.e. you are subluxing or dislocating a joint or joints in your sleep) then you need to look at some kind of bracing (at least to sleep in) for this you need to get a referral to an orthotist.
I hope this helps and again WELCOME.
By the way I have HEDS (sort of like HMS only with MORE symptoms and problems).
Sharon  
Posted by SL99 (SL99), 18 August 2003

Hi Kristy,

I'm so sorry to hear that you are having so many problems right now with your HMS. It is perfectly understandable to be scared. I'm a fellow hypermobile Odd Bod as we call ourselves here, having a suspected rare sub type of EDS so I can sympathise with the subluxations adn dislocations.  

You are doing the right thing in seeing your doctor, and I would advise you do a little bit of reserch and take a list of your symptoms with you. It's always good to make a list of things you need to tell your GP as we all end up forgetting stuff as sson as we leave the room! Itemise what you need to tell him/her and what you want to know too.

I would advise that you ask to see a rheumatologist with experience of HMS, a pain management clinic to get you some better pain releif and see about getting into a physio program experinced in Hypermobility as with you being so young proper therapy could be used to retrain and protect you joints from further damage. Plus they might be abelt o give you some barces or taping that would help to stabilise your joints particularly at night.

Hang in there Darl, it is scary but it doesn't have to be all doom and gloom. You are young enough to work through this and find ways of adapting to it, so stick in and make sure you get the help you need as that can often be the hardest part - getting people to beleive and help you. Take care and know that were all here to help you in any way we can, even if you just need to talk about things.  

Love and hugs....Jo
xxx
Posted by rhea (rhea), 18 August 2003

Hi There,

Yes, I'm a fellow odd bod too.  I have HMS/HEDS and know only too well the fun of it all.

What I STRONGLY SUGGEST is the following:

- Do lots of reasearch on "hypermobility syndrome" and "ehlers danlos syndrome"  Read all you can find and GET EDUCATED about your body.  If you have a rare disease or disorder, you absolutely cannot just lie back and give up.  You have to do your own research on it, find out the different treatments, find specialists in your area who can provide this treatment, and get in to see them.  It's a sink or swim situation hun!

-  Find yourself a good PT who is educated or at least knows a bit about HMS and see if you can get yourself into some sort of strengthening program to get the muscles around your joints as stong as possible so maybe you can cut down on the joint damage and injuries.  Really, this is quite important.  I didn't finally get diagnosed until a few months ago but have had HMS symptoms for years and years.  By now it's too late with many of my joints as they are all worn out and like an old woman's body (and I am 18!).  My PT I see now is shocked at the crappy condition my body is in.  Maybe, if I had recieved better medical care, diagnosis, and PT years ago I might have been in better shape now.

- POOL THERAPY  I cannot say enough about!  For people with arthritis and HMS/EDS especially it is a good thing.  See if you can find a good physio therapist or kinesiologist that can give you some strengthening excersises appropriate for your needs in a pool.  Not just any pool either, but a THERAPY pool which must be heated to at least 86 F, prefferably 90F+ and is handicap accessible so you don't hurt yourself getting in or out.  If you don't know where to find such a pool call the YMCA as they often have them, call around at PT places and ask.  If you have an arthritis society or charity get in contact with them and ask.  They would know where the closest therapy pool to you is.

-Pain management is also a good thing.  See if you can get into contact with an good pain clinic and get looked after there.  Prefferably a pediatric clinic as you are 15.

Keep fighting Kristy.  This is YOUR body that is hurting and it is YOU who has the job of finding people to help you look after it.  Don't ever feel alone!  We here will all help you through it.  

Hang in there, keep fighting, and never back down.  We're rooting for you!  Welcome to the odd bods ;-D

(((hugs)))

-Rhea

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