By funky cool on Wednesday, November 27, 2002 - 09:49 am:

My joints come out of place easily but not fully

My joints always ache

I can get the end of my thumb to my wrist if i use my other hand to guide it.

I went to see an orthoepedic surgeon about an injury to my knee. He said I have flat feet (which i dont think i do), flexible joints, softened bone and injured tendon.

My joints always feel weak.

My friend has HMS badly and she thinks i have it too.

Doctors say it is growing pains.

My parents and some teachers think that i am a hypochondriac.

Im 12.

Im 2 afraid to tell them what i think it is (HMS) because they said they will take me out of my school if i carry on 'pretending'.

My blood tests and xrays came out clear.

Ive never broken anyhthing.

My friend and i injure ourselves around the same time and that makes everyone suspicious.

Ive had to be brought home from school 2day with dislocated wrists.

This is when my parents started saying about taking me out of my gr8 school.

Ive injured ligaments before but nothing serious

I just dont no what to do.

Can you tell me whats wrong with me?

Plz help im so confused.


P.S.Sorry this is so long.


Thanx

By Ian on Wednesday, November 27, 2002 - 10:32 am:

Hello Funky Cool

Firstly I give you the following: If the tendons and ligaments surrounding joints allow a wider range of motion than is usual a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems and often demonstrate their extreme flexibility to friends to “freak” them out. But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major problem in terms of pain and mobility problems.

Your joints sublux and you have joint pain. The flat feet comment could well be because you have HMS and the foot appears “flat” due to flexibility. Yes, the joints feel weak because they are flexible and you do not have sufficient muscle tone – you need to do resistance exercising.

Giving the term “growing pains” is pathetic. That is not what is wrong with you. Blood tests and appearances often do not indicate that you are anything other than a normal person and this is a real problem to a person with HMS.

Whatever you do make sure that you do not do jarring sports or exercise. Running, gymnastics and anything that will jar your joints should be avoided. Your parents need educating so that they will protect you.

Regards, Ian ( mercedes_nz@yahoo.com ) if you wish to mail me.

By shazinoz on Wednesday, November 27, 2002 - 04:37 pm:

Funky Cool,
I stick with what Iam says, you need to get this sorted out as Hypermobility + Subluxations and pain is a Hypermobility Syndrome. You need to get a doc to "officialy " diagnose you if possible (ask your friend how diagnosed them and see if you can see this doc as they obviously know HMS) so that you can let your parents and school know that there is a medical problem and not "faking it, or attention seeking" but a physical condition. I wish I had of been diagnosed as a kid (instead of when I was 31) as it would have made my life much much easier and prevent a LOT of injuries some pretty serious (like dislocating my pelvis and hip and not having them put back in , as no one realised and now they can't be put back in, and tearing the ligaments in my knee so badly that I have had it reconstructed twice already and looking at a possible 3rd time, also stretching my shoulder so badly that when I yawned, sneezed, rolled over, got dressed etc it "fell out").
I went all through school being told there was nothing wrong with me, it was all in my head, yes by doc's to (even with xray and bone scan proof of my dislocated pelvis), that i was attention seeking, that it was because my Mum was a single parent, that it was because my parents were divorced, adn the latest and "best" because I obviously must have been abused as a kid and that (pain and injuries) etc was my only way of trying to tell people (THIS IS NOT TRUE I was never abused AHHH).
So yes Funky cool a diagnosis odes help as if a doc says it it makes others believe it is true (even though you have always known there was something wrong/ not right/ different, and that it is probably HMS).
Good luck Funky cool and here is hoping you get the help you need.

By bree on Thursday, November 28, 2002 - 03:01 am:

Is there any chance of convincing your parents to come and have a look at this site? Perhaps then they might realise that we're not 'pretending', not 'attention-seeking, not 'abreacting psychic pain', and that there are more of us with these sorts of symptoms than they might have thought. Being sick is scary and confusing enough, without being disbelieved to make it even worse. Whether your problems are coming from HMS or not, they need to be properly investigated, so that you at least understand what's going on. This idea that you ask your friend about her doctor sounds like a good place to start - if this person has helped diagnose her, they might be able to help you. Please do post again and let us know how you're getting on.

By Rosie on Thursday, November 28, 2002 - 09:39 am:

Hi funky cool
I'm 16 so near your age nd i am still in the process of diagnosis, so far i have been diagnosed with "large joint laxitY" but i want to talk to my doctor about HMS. The first doctor i went to said it was all in my head. persevere, take info about HMS with you to the doctor and ask them again. Why would your parents take you out of school? Don't quite understand that. What country are you in? if you go to www.hypermobility.org then "Diagnosis" there is a really good page all about the criteria needed to be diagnosed with HMS. Try taking that wioth you

- Rosie

By Isabelle Scicluna on Wednesday, October 20, 2004 - 02:15 am:

Hi ,

I have just descovered that i do have HMS and FMS after more then 6 years of continous pain and several blood, x-rays , emg and other tests... and now I have to live with it. They told me that either i go on anti depressent or else start with the help of a Phsotherepist to do some daily exercises and add to my schedule some training ... i have to stop to do the extem strechings and limite my self to a certain streching exercises... I know that compering to others i should be happy at least if i know what to do i can live a sort of normal life .. but i must admit that i feel a bit down ... i am 26years old and my friends are all so strong ... i can't even write proper and i had to postpone exams , i can't scrap my house while cleaning nor to carry shopping bags ... I am not married and i live alone ... so i have to do everythg myself.... i have to work for more then 40years, ok i am doing my best to get more qualifications in order to get a better post in an office and use my phisical strength less and less ..but what else should i do .... ? i wonder ?
Could you help me and also could you please support me and inform me on this matter since i do not know exactly what i should feel !
thanks

Bella

By Michelle Castle on Wednesday, October 20, 2004 - 06:46 pm:

Bella,
There is any one way that you should or shouldn't feel. Learning to deal with a chronic disorder affects everyone differently. I imagine it's normal to feel angry, confused, frustrated, and overwhelmed.

I would go for the combo of medications and phsyical therapy. No reason, at least in my view, to only do one.

As for trying to get through your education, can you arrange to use a computer when taking exams? My university allows that, and it helps me a lot. I also have a word processor on loan from the university that I take to classes, allowing me to type notes instead of writing. If I need to, I can get additional notes from other classes or from my professors. And I type all my assignments, even for my Arabic class. It's made a huge difference.

Michelle