Mumble Report post Posted March 1, 2011 I got told today I have hypermobility syndrome. That wasn't even why I was at the hospital, they were exploring something else, but apparently it's related. The consultant was really brisk and I didn't feel really at ease to ask much. He kind of just pulled all my limbs in directions they're definitely not supposed to go, increased the pain I was already in, gave me his various diagnoses and sent me on my way with a 'by the way HMS is connected with Autism'. Oh and he bullied his skeleton model trying to demonstrate my joints to me... So I'm hoping there's someone here who knows something about this and can explain it to me. I googled it and scared myself. Though much of what I read did make sense. Is this a life-long thing? Will it get better/worse (I've had increased pain recently and my fear is this increasing)? What's the connection with Autism and what does this mean in terms of practical whatevers - is it an inevitable part of ASD or just me being unlucky? Quote Share this post Link to post Share on other sites
justine1 Report post Posted March 1, 2011 Oh dear Sorry Mumble <'> I don't know much either but it was something they said Dan might have when he was a year old,before we even knew of either boys' ASD. His arm came out of joint easily and often we ended up in A&E three times over new years eve and new years day, he was about 11mths. Since then he has constant pain mostly in his legs but also fingers.We have not investigated furthur,my sis-in-law is a physio and she has helped alot. I hope you can get some help for it Quote Share this post Link to post Share on other sites
Mumble Report post Posted March 1, 2011 Thanks Justine He said I would have ongoing specialist physiotherapy at the hospital. I'm seriously beginning to think I'll save time if I just pitch my tent in the hospital grounds the amount of time I spend there... Will this be something I've always had that's just never been picked up (I was a very bendy kid and good at hiding in tight spaces!! ), something that's progressive or something I've just developed for no reason? Quote Share this post Link to post Share on other sites
Boy Report post Posted March 1, 2011 I think that you must always have had it but no one's picked up on it. The only people I know with Hypermobility Syndrome aren't autistic, and they all have it to varying degrees (one spending lots of time in hospital related to it, for example but I'm not sure if it's progressive or has always been that bad as I'm not close enough to her to ask her about it). Quote Share this post Link to post Share on other sites
RainbowsButterflies Report post Posted March 1, 2011 (edited) ((Hugs)) If it makes you feel any better - looking at the criteria I think it's another one I could add to my list... [Edit - all my hugging smileys seems to be turning into grinning smileys when I post ] Edited March 1, 2011 by RainbowsButterflies Quote Share this post Link to post Share on other sites
charlotte Report post Posted March 1, 2011 I am interested by his informing of a connection between between HMS and ASD as i have both but have never heard of this and would be very interested to find out more. I was formally diagnosed in london by Professor Grahame who was extremely good and worth seeing if you can, though prior to this many physio's has mentioned it. a good web site is http://www.hypermobility.org/ and yes i admit when i read this at the end of last year after my first flair-up where no one seemed to be able to fully explain what was going on it was scary but all made sense and further sense was made by pro Grahame and my specialist physio (both in different parts of the country interestingly). The important factor for me was realising yes it is life long but severity is related to type and personal case. hydrotherapy, tenns machine and innersoles so far have had the biggest impact on me regarding symptom control and improvement with medication for me having little affect on symptoms but causing side affects. saying that though there are many others i could try if i were to flair up again to that point and i would also consider eg acupuncture. I am aware here i could be overwhelming you and remember how much at the time it was for me to take in though did explain my symptoms fully. feel free to message me privately if you like there are also many groups on facebook though a lot are american there are some uk ones. take care Quote Share this post Link to post Share on other sites
Lynden Report post Posted March 1, 2011 (edited) Hi Mumble It's probably something you've always had, and it is lifelong. It can be managed fairly well as far as I know though. I know quite a few people with hypermobility, some autistic, some not. I don't think (or wasn't told) there was a directly link between ASD and hypermobility but like so many other conditions, they can occur together. Logan has hypermobility and hypotonia, as well as being autistic, so he has low muscle tone, and is incredibly bendy - he is double jointed almost everywhere. He couldn't sit properly till he was about 18 months and couldn't walk till he was over 3, and even now he slouches when he sits and looks like Pinocchio when he walks/runs He's in piedro boots to support his ankles. For him age 7.5 it means he struggles with fine motor things as he doesn't have the strength as opposed to the skill to do certain things. He can hold cutlery, but struggles to stab the food for example. He also tires easily and will get pains in his knees especially if he walks for extended periods of time. He often gets pains in his legs through the night too which isn't nice - so far it's manageable pain with nurofen though. I'm not sure how it will affect him when he's older. He gets himself into some rather interesting positions though We do have to be careful when managing him that we don't dislocate anything though - which can be tricky when we're trying to keep him safe if he's having a strop! Swimming is very good for him though and a lot of the exercises we get from OT are beneficial. We don't see physio regularly at the moment but we do have an open referral. Lynne Edited March 1, 2011 by Lynden Quote Share this post Link to post Share on other sites
ScienceGeek Report post Posted March 2, 2011 Hi there Mumble, Just a quick reply from me here. I am also diagnosed with HMS/EDSIII, I would highly recommend checking out the HMSA forum boards as there is a long standing thread on there about the link between hypermobility and HMS/EDS. Here is a link to one of the threads, not sure if you are able to access it without being a member of the site - http://www.hypermobility.org/forum/viewtopic.php?f=4&t=3717&hilit=autism There are a lot of conditions linked with HMS/EDS and it really does vary from person to person as to the severity, I know some people who have quite a good quality of life and have very few dislocations, subluxations and then I know some other people on the more severe side of things. The good thing is that it isn't life threatening in the majority of cases so it is more the case of finding ways to pace and manage the condition as best as possible really. There are some really good books out there about it and a lot of knowledge floating about on the HMSA and EDSG forums SG Quote Share this post Link to post Share on other sites
charlotte Report post Posted March 3, 2011 i am aware of the conection with hypermobility HMS and EDS. I have them all. the conection i would like to know more about is related to these with ASD. Quote Share this post Link to post Share on other sites
av16 Report post Posted March 3, 2011 (edited) My eldest DD has been diagnosed with hypermobility after suffering with a painful hip for over a year, we've always known she was very flexible as is my other DD though both don't have ASD. My DS who has ASD doesn't have hypermobility but I think that there must be some genetic component. I find it all very interesting and hope that research in the future works out these links. My DD is getting by with physiotherapy but as she's at uni a long way from home it's been difficult to have regular treatment. Her flexibility has helped with her ballet though, she's had to have a year off but she's back dancing now so she's happy . Edited March 3, 2011 by av16 Quote Share this post Link to post Share on other sites
trekster Report post Posted March 3, 2011 I was assessed for HMS/EDS at the local physio department. The lady bent all my joints into various positions and in her opinion im not hypermobile. ive got very flexible ankles and possibly flexible elbows. i will see how the physio goes as im wondering if the fibro masks any flexibility? If your muscles are very stiff for example in your upper back and shoulder area does that mean HMS/EDS will be missed? Quote Share this post Link to post Share on other sites
Kathryn Report post Posted March 9, 2011 Hi Mumble, L (my daughter, now 21) was diagnosed with this condition about 5 years ago - it affected her quite badly at around that time although things have improved since. I think a link between that and ASD has been suggested although I don't know if any serious research has been done. The subject has popped up on the forum before: here's the link to one thread and within that there's another link which I apparently contributed to as well. http://www.asd-forum.org.uk/forum/Index.php?/topic/17309-hypermobile-and-autism/page__p__211031__hl__hypermobility__fromsearch__1#entry211031 K x Quote Share this post Link to post Share on other sites
KezT Report post Posted March 9, 2011 My DS is the opposite - he is hypomobile (as dx'd by a paeds physiotherapist). I'm prety certain it is related to his ASD in some way, although the official opinion is still out on this. I think it expains the ASD gait you often see. Of course, the AS is definitely the problem when it comes to getting him to do his exercises, so the same level of hpomobility in someone else would cause less problems..... Quote Share this post Link to post Share on other sites
jb1964 Report post Posted April 23, 2011 Hi Mumble - my daughter has this (diagnosed a couple of years ago)- she has it in most of her joints. I think it can vary from just one or two joints to nearly all and depends on how lax the joints are as to the severity of any problems. For my daughter, her knees and feet are the most problematic, which is expected because of bodyweight stress put on these joints - she also struggles with utensils or anything requiring strength and co-ordination. She got offered OT and PT but her anxieties got in the way and it's been put on hold at the moment. There are loads of gadgets out there for the kitchen if you find it difficult with your hands and also splints to help your thumbs/fingers. Have you been referred for OT? Take care, Jb Quote Share this post Link to post Share on other sites
JGardner Report post Posted April 24, 2011 my son has it you can get insoles from orthotics if it hurts to walk far, special cutlery if it is hard to handle cutting food and gripping and it makes writing hard for him it hurts after a few words all the way to his arms, he trips, fall and hurts himself a lot but he si also clumsy and has a.s.d he is 12 we found out this year, he was alwasy more tired than everyone else, you joints are loose and usign them burns more oxygen, making you more tired Quote Share this post Link to post Share on other sites