Hypermobility syndrome

mazza111

My daughter has been told she has very mobile joints. Not actually diagnosed with either of the above mentioned conditions. A junior doctor once told her (when she was 9) she would be in a wheelchair by the time she was 30 :eek: Guess he needed to work on his bedside manner after a few strict words from mum.

Would it be worthwhile pushing for a firm diagnosis on this? Her knees dislocate regularly but pop back in as easy as they pop out (9 times out of 10) and any injury she gets through sports used to always give her a dislocation rather than a break in the bone. Ankles when diving etc. Fingers playing basketball. She's now 21 and has suffered her first bone break. Was having real problems with the crutches, she was not allowed to weight bear, but her wrists were dislocating and her other knee was in agony with the crutches and using one leg. Finally she got allowed to weight bear on her broken leg, when bang the good one dislocates again. Grounded to upstairs bedroom until she's got enough strength again to move.

Another question, is this something that can run in families? My knees kinda pop out half way and then go back in, but not to the extremity of my daughters, but that's due to patella femoral something or other, but still have mobile joints, but not to the extent you guys have.

If anyone can offer any advice on where to go with her now or if it would be worthwhile getting a firm diagnosis, I would gratefully appreciate it. Feel free to pm or answer on here.

Thnx

MILLYMOLLY

[QUOTE. Are you having physio? You should be, if you're not...[/QUOTE]

Hi my son was told about 12 months ago, by a physio, that he has hypermobility. But no longer sees physio as he is now 16, still at school, in year 11. The Dr won't refer him to anywhere because he's already been to the children's hosp who diagnosed osgood schlater (sp) in his knees and his back, something beginning with M I think will check and post later. It was only when he went to the physio for his back and she mentioned hypermobility. He does suffer, especially in the cold with his back, shoulder, hips and knees. Doc just says take paracetamol

splodger_seedswapper

Trialia wrote: »

Olokia, if you have hypermobility EDS, I'm sorry to say that you will later on. It tends to get worse, even though it's not clinically classified as degenerative.

although it does seem to get worse as you get older - (has for me anyway) i was generally ok with the bendy bits - and the occasion dislocation - until about 10 years ago - and i really started to suffer much more pain and less and less mobility - so much so that i don't get any "good days" anymore

but and this is important - some hms'ers can have the condition yet not suffer at all (or very little anyway) the thing is - nobody is the same - and symptoms will vary considerably - it doesn't have to be doom and gloom for everybody (although it is for many)

D&DD wrote: »

Morning Bendy peeps
We're still trying to get to the bottom of what my son actually has,they are thinking Marfans/Loeys-Deitz but were told last week he now has to have heart surgery has anyone had complications which affect their organs due to the collagen issues?

Feel free to PM me if you don't want to discuss on an open forum many thanks.

i haven't had any heart problems - but as there is collagen just about everywhere in the body i wouldn't be surprised if organs were affected in some way

are you a member of the hypermobilty forums? it might be worth you asking in there as there is a good group of people with varying levels of smyptoms/conditions etc

mazza111 wrote: »

My daughter has been told she has very mobile joints. Not actually diagnosed with either of the above mentioned conditions. A junior doctor once told her (when she was 9) she would be in a wheelchair by the time she was 30 :eek: Guess he needed to work on his bedside manner after a few strict words from mum.

Would it be worthwhile pushing for a firm diagnosis on this? Her knees dislocate regularly but pop back in as easy as they pop out (9 times out of 10) and any injury she gets through sports used to always give her a dislocation rather than a break in the bone. Ankles when diving etc. Fingers playing basketball. She's now 21 and has suffered her first bone break. Was having real problems with the crutches, she was not allowed to weight bear, but her wrists were dislocating and her other knee was in agony with the crutches and using one leg. Finally she got allowed to weight bear on her broken leg, when bang the good one dislocates again. Grounded to upstairs bedroom until she's got enough strength again to move.

Another question, is this something that can run in families? My knees kinda pop out half way and then go back in, but not to the extremity of my daughters, but that's due to patella femoral something or other, but still have mobile joints, but not to the extent you guys have.

If anyone can offer any advice on where to go with her now or if it would be worthwhile getting a firm diagnosis, I would gratefully appreciate it. Feel free to pm or answer on here.

Thnx

over 35 years ago - i was told that i would be in a wheelchair by the time i was twenty - i am 42 now and still not in a chair (although i could do with one sometimes as my walking ability is pretty dire)

yes it is hereditary - it's a gene defect that can get passed on (or not) my dad gave me his faulty gene (which he got off his mum) neither of them have "suffered" from the condition like i do - but they do have the occasional pop out (my dad's mother is still alive and in quite good nick considering she is 102, bless her)

i also know what you are saying about crutches - they just don't work when you are hypermobile (not for me anyway) as, like you say - any weight transferred simply results in a pop out somewhere else.

re doctors and diagnosis - the main problem i think that hms'ers has is that drs don't have much of an idea about the condition - and there are only a few specialists in the country - ok if you live near leeds or in london - and only any good if you are that bad that you can get a damn referral - which most can't i'm afraid.

the best that most sufferers can hope for is a referral to a rheumatologist (who usually sees the more elderly often arthritic / rheumatism patients) and hope that the rheumy has a bit of an idea about the condition. i was lucky with my rheumy as he did have a bit of knowledge and i did get to see the OT and had physio + hydro - but the therapy sessions are only for a short period - so once you have finished the sessions you are back on your own again

i get so frustrated by the lack of support from the NHS for hms'ers - but i don't want to rant

all i can suggest to those that have recently posted - check out the hms boards if you haven't done so already - you will have more chance of getting your q's answered on there - here is a link if you need it

http://www.hypermobility.org/forum/index.php

Olokia

Trialia wrote: »

Olokia, if you have hypermobility EDS, I'm sorry to say that you will later on. It tends to get worse, even though it's not clinically classified as degenerative. I was at your stage when I was about 14 years old. Just over a decade later, I have secondary fibromyalgia, I'm on morphine and cannot move without dislocating. But an early diagnosis in your case may be helpful to slow your deterioration. Are you having physio? You should be, if you're not...

I was told it wasn't degenerative by my doctors but I can see that it is. When I was 16, I was fine apart from dodgy wrists and then overnight developed pain in my shoulder that kept coming and going (but mostly staying) until 2 years ago where it stayed away. This was about the time I learnt that I was hypermobile so I adjusted slightly. I was still able to do all sports and everything. I started running last August and had to stop in March because my hip and ankle kept hurting. I was still doing exercise but running on a treadmill instead which didn't hurt. In June, I fell off a horse and sprained my ankle badly and couldn't walk. Once I stopped exercising everything went downhill, my shoulder pain came back, and I got pain in my back and neck and my ankle took ages to heal. Now I can't exercise and can only walk and cycle. I'm hoping by starting the exercise back up, I can get back to where I was.

I used to have physio before I was diagnosed with Ehlers-Danlos and it didn't help at all because they weren't giving me the right exercises. I went to see the Sheffield EDS clinic in October and they referred me to a physio in my area and I am waiting on an appointment.

I don't mind so much about not being able to exercise although I miss it especially the horse riding. It didn't hurt when I was riding but I can't take the chance of hurting myself too much if I fall off again. The one thing that I do worry about is when I get pregnant how I will be. The EDS clinic said that nothing will really be different compared to other pregnant people but I don't believe them. I will see when it happens but I think it should be sooner especially as you say, EDS is degenerative.

My main problem is when I am hurting, I need a couple of days off work so that I can rest. I can only get Statutory Sick Pay and as I only take a couple of days I never reach the requirements. I have lost 20 days of pay this year and its quite expensive for me.

Racheldevon

Hi there,

There are lots of really good services available, and I would argue it's worth getting a diagnosis. Personally I was diagnosed by Professor Grahame at UCL in London - well worth the travel, and it is possible to see him on the NHS. It wasn't until this point that I began to get the support I needed - and i'm very glad I have. I think it's also important to point out that things can improve, with the right specialist input, dedication to doing physio /pilates daily (in my case), pacing, pain management input etc etc. This isn't to say it's not without many many difficulties at times, and periods of acute flare ups etc. However I wouldn't have got any of the services without really pushing for referrals, doing a lot of my own reading and research etc to insist on being seen by certain people. I'm now in a considerably better place compared to 5 years ago - this isn't to say that ocassionally things dn't sublux etc, because they do, but the gaps between these episodes are increasing, and I've finally found an excellant physio and am able to manage the chronic pain much much better than previously.

Regarding the heart question - there's a whole range of connective tissue disorders - have a look for example at Elhers Danlos Syndrome, which has a number of subtypes, some of which can affect the heart like Marfans for example. A diagnosis will rule out more serious (by that I mean ones that can affecty organs, eyes etc), and enable access to things like extra support with exams, Disabled Students Allowence and university and a whole host of other things. The Hypermobility Syndrome website as someone else has suggested is a very good place to start

MILLYMOLLY

MILLYMOLLY wrote: »

[QUOTE. Are you having physio? You should be, if you're not...

Hi my son was told about 12 months ago, by a physio, that he has hypermobility. But no longer sees physio as he is now 16, still at school, in year 11. The Dr won't refer him to anywhere because he's already been to the children's hosp who diagnosed osgood schlater (sp) in his knees and his back, something beginning with M I think will check and post later. It was only when he went to the physio for his back and she mentioned hypermobility. He does suffer, especially in the cold with his back, shoulder, hips and knees. Doc just says take paracetamol[/QUOTE]

Bach problem is scheuermann's disease

cally6008

olokia - pregnancy makes you worse, definitely go on the HMS forums for advice

HMS forum is good but be aware that some people on there are very affected by hms/eds whereas like splodger-s-s posted but and this is important - some hms'ers can have the condition yet not suffer at all (or very little anyway) the thing is - nobody is the same - and symptoms will vary considerably - it doesn't have to be doom and gloom for everybody (although it is for many)

If anyone wants to chat on facebook, this is the group I'm a part of .. http://www.facebook.com/pages/Cumbria-Hypermobility-Syndrome-HMS-Group/146201148779125

It's for Cumbria but anyone welcome, we have a closed/secret group for just those in Cumbria as well

Olokia

cally6008 wrote: »

olokia - pregnancy makes you worse, definitely go on the HMS forums for advice

I know, I decided it was worth it.

sunnyone

Olokia wrote: »

I know, I decided it was worth it.

Women with the syndrome/s have a much higher risk of miscarrage than other women, it wasnt well know when I first became pregnant in 1988 but things have improved so much since then though I would advise every woman to seek help before TTC.

I was five months gone when I lost my first baby, the others were much ealier in pregnancy but it didnt make it any easier to deal with losing them.

jennie-jack

i have this too, after babies im now more near to tralias case. i have POTS, TMJ something or other. i have trouble swallowing and aspirate due to floppy oesophagus. scaling through pain relief so i can continue living life. i also have three children who have all been diagnosed. they are all tube fed because of it. they got the same symptoms as i have.