hypermobility syndrome (HMS) does it limit you?

[cally6008]

Spacial awareness - yep, always bumping into things especially when carrying stuff at work ... was at physio once who told me to put my back against the wall, take one step forward, close my eyes, then take a step back .. cue heel cracked of the wall

 

[JustMe22]

I was told I had HMS when I was..I dunno, about 9 or so I spose because I had constant problems with pain and things clicking in and out. I've had problems with it since (now 20), and I know I'll struggle when I'm older (apparently I have the beginnings of arthritis already), and do get weird injuries, managing to hyper extend things and pop joints out of place, and general bruising/swelling/sprains etc.

But, I love my riding and sports, and just manage it as best I can. Strengthening exercises help, and I find exercise does too (though not running). I imagine swimming would be good.

Initially when I started with martial arts and riding and other sports it hurt afterwards all the time. Now I can happily ride at least one horse a day without too much pain - sometimes after jumping with short stirrups or long rides (outrides with all the clients or something) my knees will ache but that's about it. I would try something like pilates/yoga, or go and see a physio or biokineticist, they gave me loads of exercises to help strengthen my surrounding muscles and make the muscles more flexible, and it does help a lot.

Another suggestion - get a pair of those flexi-stirrups. The sprenger ones or something to that extent.

(Having said that, I am now sitting around with a possible ligament tear in my elbow after doing something very routine in a martial arts class, but still riding!)

 

[Shysmum]

As for meds that help, I have found diclofenic really does, tho I do take a lot of paracetamol plus too.

I'm at my parents at the moment, and they're horrified at my lifestyle , but I am managing the condition as best I can (weekly physio, actually doing the exercises for once), and I find the movement of riding really helps my back. There is no way I'd give up what I am doing - both for my mental and physical health. I "think" they understand now

 

[meyvonne]

I have it to.
Not as bad as some people but i'm still in pain every day again.
My shoulders are the worst and because they are connected to your neck and back especially the muscles that area hurts the most.
It helps to have a massage so now and then but it is still painfull.
When i'm working in the yard I have a lot of problems especially with mucking out and carrying water buckets.
I try to don't think about all the pain and just carry on because no way that I would give it all up.
Horseriding doesn't make it worser so why should I not do it.
I do not take any medication or anything, I just hope that I get used to the pain once so that I don;t feel it anymore hih.

 

[tabithakat64]

I was diagnosed with HMS several years ago by my rheumatologist after having knee, hip and back problems, I can do all of the HMS party tricks too
I also have ME, raynauds and IBS so cannot comment on what effects any particular illness give me.
I really struggle to manage the pain and struggle massively with uneven ground, mounting etc. I find gentle stretches, massage and light hacking help with the pain as well as various types of painkiler and muscle relaxants.
It's nice to know that other people do manage to ride and look after their horses whilst suffering from HMS

 

[KBear Ellie]

Hi All

I have type 3 EDS and have ridden since I was 5. I was surprised to see so many of us - I've decided to create a facebook group for us all to swap ideas/experiences etc

It's an open group so feel free to join and get talking to everyone else struggling with hypermobility and riding. I called the group "Elastic Equitation" - search, or a direct link is here:

https://www.facebook.com/home.php?sk=group_239047506107291

I hope you guys read this and join. It'd be really good to get a forum together for us all

P.S. I usually only struggle with my hip joint subluxing when I am messing with stirrups - something about rolling my leg back makes it go all urgh.

 

[roxilp]

I have just been told i have bjhms.I work with horses,but every day i deal with bad hip pain and back ache.Im all new to this and dont know if i should cut out riding untill ive got everything feeling better.Walking to catch the horses even hurts.The cold weather is not helping at the moment at all.i need every bit of advice as my doctor didnt seem to know much about it.He said my hip pain is due to my riding,but didnt say to give it up.But i cant go on like this as every day is a nightmare.

 

[Gracie21]

Hi It is very interesting reading about this, especially other horse riders!

I do not have HMS but can appreciate the pain it puts you through all the time.

I am 7/9 hypermobile (the only thing I can't do is bend my thumbs back!!) and have various injuries that always come back. People always tell me that i'm clumsy!

I have problems with my shoulders, knees, ankles and wrists. My neck also causes issues, and I normally have back ache!

I have taken up pilates because physio doesn't seem to work, and I have noticed a real difference in the stability of my joints.

I can't run, ride a bike or any of those normal things! I also ache an awful lot when I ride, mostly my knees, and I always get in a lot of pain when I dismount, or when I have to kneel down. Dublin flexi stirrups sound interesting, I will have to look them up!

Anyway, I don't provide much input but I'm happy there are others like me I always get told I'm weird and abnormal!

 

[Sunshine]

So relieved to hear of other people who ride and manage horses whilst coping with this disability. I was always slightly hypermobile - bendy - but when my 10yr old was born with positional talipes they assessed her as a baby and diagnosed hypermobility. Then the physio explained that when she walks it is like stepping onto jelly, whereas a normal person feels solid ground sufferers get the constant ripple of wobbling with every step. She has had insoles and splints from first moving round but attends a normal school with no adjustments.

She has ridden since she was 4 years old and at the physios they said that it was actually helping her to control her balance and muscles because the tendons and ligaments were stronger thn she would expect from a child of her age. She does have bone spurs developing on her feet and ankles now but they won't operate because they think it might cause more problems than it solves for now. Her shoulder blades are a bit of a concern because they will 'assume the place of least resistance' and drop round if she doesn't consciously hold them back and down or wear her shoulder brace - but at least this helps with her sitting up straight in the saddle ;-) .She did break her elbow in a fall off her pony because of the over-extension at the joint but luckily she wasn't deterred from riding.

For the poster whose daughter is younger and also suffers, it hasn't stopped mine having a full life - she rides and wins (without concessions) in open novice level dressage against adults on a 12hh pony she produces herself. She also represented her PC branch in area competition as an 8 yr old, coming away with 60% scores without the judges knowing about her condition. Last week had a judo taster at school where she was strong enough to throw a year six lad onto the mat although she did feel a little achy after, but the sense of achievement outweighed it.

This is a link to some of her tests on a new 14hh SHP that she has been riding since December, along with some old prelim on her 12hh.
http://www.youtube.com/user/CharlieBrooks620

 

[noblesteed]

This is interesting, I have slight hypermobility in various joints. I have always been a bit 'bendy' as has my sister - she has collapsed arches in her feet and dodgy knees, but we never knew it was an actual condition - despite her being a fully trained nurse. I didn't know anything about it until I came off horse and dislocated my radial head which then popped in and out of it's own accord several times... Hospital wouldn't believe me and I ended up having tons of xrays and them sending me home saying it was 'fine as it's not broken, and it couldn't dislocate without breaking' - despite me watching it bend backwards as I fell, my whole arm turning green with bruising and the joint then being locked at a 90 degree angle. It was the physio that treated my elbow that told me that's what it was. Funny also because I have episodes of IBS too. I found with my elbow that glucosamine, chondroitin and MSM supplements made a huge difference, it would seize up on the days I didn't take them. I do pilates, that has helped in certain areas such as my back, though I have to see a physio about my hips/lower back - I pay privately because the NHS weren't interested.

I HAVE found it problematic in pregnancy as it has lead to SPD - where your pelvis comes apart too much too early, causing excruciating pain. I have suffered hugely at work because of this - like many people say, because others can't see it they think you're making it up. I had to go sick long before my maternity leave had started and it caused me terrible stress too, as I was treated like absolute s*** by colleagues who thought I was just being a wimp and should 'get on with it'!!!

I definitely think that there needs to be more publicity about this condition. Mine is very mild in comparison to some people on here and I am still appalled by the way people have treated me like some sort of whinger. I really do feel for all of you guys who are suffering daily, it is so debilitating, especially when people around you just don't understand.

 

[SusannaF]

I've also given up on physio – it only ever seemed to apply to one joint and one problem for a short time when what I needed was an overall picture and a lifestyle change.

I work on good posture and stabilising my joints to make sure they don't get damaged. Pilates is good, as is swimming and general awareness of what's "good" and what's "bad".

I avoid painkillers as much as possible.

 

[Spiritedly]

I have HMS, although I wasn't diagnosed until 3 years ago when I went for physio on my back as my Drs didn't there could be a medical reason for my back pain if I could still touch my toes It was nice to realise that there was a reason for my joint pain! I have trouble picking out feet because of bending and if I ride for to long I need to take my feet out of the stirrups or my knees lock, the same with my fingers, I need to adjust my grip on the reins to prevent them seizing. My youngest also has it and although he sees a pediatric physio it is more for monitoring as she is happy that his horse riding and gymnastics is giving him the exercise he needs.

 

[dj9ao]

Hi Everyone
I am just so glad there are other horsey people who also have HMS-nice to know we are not on our own,

I have worked with horses all my life & wondered why it didn't affect me that much, then got injured, rested then it has been a slippery slope downwards as my body has got weaker/more injured/less fit, it is a cycle I am finding hard to break & yes the pain does seem much worse in the winter!
Also had to deal with a livery yard that were nasty & discriminating because sometimes I was on crutches/ in a wheelchair, my horse did not care, he just bit the ends off my crutches!

Lost my horse a year ago & wondered about the sanity of getting another-one with the constant injuries,

when I am riding my horse, I forget about the pain, the injury & not being able to walk very far, my horse was my freedom and he kept me going,
I have thought long and hard and I am now in the process of getting another!
& yes nobody understands, I tell riding instructors I cannot ride because of my hips & because they cannot see anything they don't believe you-
ahh well-such is life!

 

[Dr_Horse]

Hiya
I have hypermobility syndrome. I also have physio weekly on the NHS.
Mine is mainly knee's, Hips, elbow's Wrist's and lower back. I am now on tramadol & naproxen for mine.
I have to wear an SIJ (sacro ilious joint (sp)) belt when riding usually with a back support as well. I have worn my SIJ quite badly which does cause me alot of pain.

Riding. First off. Good supporting boots!!!! I cannot ride in chaps and boots, I have to ride in long boots!!! I do most of mine without stirrups BUT cant do sitting trot for too long as it pinches my nerve and I loose all feeling down one side!!
If im schooling in trot I ride as long as i physically can and dont force myself out of the saddle to hard (so my knees dont lock out)
I also have to take breaks every so often as I keep my hands and arms very still and at correct height which really burns in my elbows. My poor mare is used to stopping every 10 mins and is very good with it all!
I haven't been able to ride for 9 weeks due to torn miniscus in my knee
Its going to be agony when i start again

Please feel free to msg me if you like

 

[islandspirit]

I have HMS, diagnosed at 13 and was then diagnosed with a spondylarthropathy when I was 40. I've gone from being super bendy with pain to limited movement with pain. I find yoga very helpful if you find a good teacher who doesnt over extend you. I find long term pain killers upset my stomach so now only take them when the pain is very bad. I suffer with my hands, ankles, toes, hips and sacro illiac. Funny thing is that my horse had a bucking fit yesterday and I thought I wouldn't be able to move this morning but woke up in less pain than Ive had in ages!! I find general riding is ok, but over an hour and my hips and ankles start to suffer. I manage to ride 5 times a week and try to fit 20 minutes of yoga in whenever I can.

 

[dj9ao]

My poor horse had to learn to stand at the mounting block for me to get off rather than on because of my feet, which completely freaked him out at first!

yes you are right about the importance of very supportive boots, after all the issues I have had with my feet, I wear a supportive but cushioned pair of walking boots for the yard and just for riding a study pair of riding boots with
insoles & this has been a big improvement,
I love shopping & the coffee & cake thing but that seems to be the worse thing I can do- walking/standing around for hours on hard/concrete floors-its a killer

I am currently having issues with a shallow hip that I managed to sprain
7 months ago when riding without stirrups. I am trying to get it stronger for riding, currently have been riding every couple of weeks for half an hour,

I scored 9/9 on the brighton scale, but we don't get any help from our local hospital, so I pay for physic when I get desperate- I seem to get a lot of tendon injuries that never really go away & scoliosis, but have been lucky to not dislocate anything yet!!

I wonder if horses can get hyper mobility?

 

[ClobellsandBaubles]

Uncanny this has been resurrected just as I have given up on the NHS completely after 6 months of constant back pain I was told I was imagining it I have probably pulled a muscle and I probably should give up riding Needless to say I have totally ignored medical advice working along usual principles and pilates and back to 'normal' lol.
What do you have to do to get help on the NHS??? I don't have the option to go private as I am a poor and lowly student. I could spell it out and come up with my own treatment plan but consultants (when you get to them) do not appreciate being told what to do by whiny medical students.

 

[ecb89]

I am hypermobile. Don't think I have the syndrome though. I'm just really flexible and alot of my joints click. Just googled Brighton scale ( never heard of it before) and I scored 9/9

 

[Montyforever]

Hmm .. I have a few symptoms mentioned on here. I'm not particularly bendy but could do the knee one on the scale. Have fallen arches in my feet and injured tendons/ligaments regularly when I was younger. Occasionally shoulders/elbows hurt and crack and I have a slight curve at the top of my spine .. Always had no spacial awareness too anyone else just have a few symptoms like that?

 

[TigerTail]

Wow amazing how many people on here have HMS too - I have it

Im another one who always used to get told off at school as I couldnt sit straight or still. Im the person in the cinema waving her legs around in the air and limping out as I find those seats crippling for longer than about 10 mins.

I used to be put my shoulders out in my sleep (interesting one to explain to the gp ''i dislocated my shoulder in bed.....) my wrists go very easily and get a lot of knee pain if I have to stand for long periods. Also if stirrup lengths arent right etc.

Mine is much more manageable being very active and most importantly WEIGHT TRAINING!!! Its helped so much, building up the muscles and tendon strength which then holds the joints in place much better, also kettlebells have improved my wrists and grip strength hugely, which tested as that of a 5 yr old aged 19!

 

[Marley&Me]

Glad to see some positivity on this thread.

Just to update I have had a major breakthrough in my own management of HMS.

PILATES!

I cant believe I never tried it before. But 4 sessions and I am a new person. Honestly people get your core stability sorted and you will improve soooo much. I have much reduced pain in hips, knees and ankles and less back ache too.

All of the above help me be more active which in turn strengthens muscle and tendons and it becomes a positive cycle.

Really cool!

 

[shortstuff99]

Yep have always done Pilates since my physio suggested it! Does great things! X

 

[Lintel]

I have HMS too, luckily I'm only 17 therefore mines has gotten to bad yet.
My hips pull out, my knees, shoulders and wrists have to be the worst.
My ribs also sublux consistently but it doesn't seem to be brought on my riding so much!
My jaw also seems to get really bad at times, but that could be due to talking far too much!

Lunging is just hellish for me, I have a stubborn highland who attempts to bolt out lunge circles- 99% of the time pulling my shoulders out of place.
I understand your pain today with this..

My hips have got really bad recently and my boy is quite wide so that's a real pain. The horrific feeling mid canter and your hip goes- is just describable to anybody who doesn't have HMS.

Recently my buttocks- like my bum bone had started almost to sublux too. I have no idea if this can even be possibly but again it's awful.
I have no back problems(yet anyway) *sigh* it's only my wrists, knees, hips and sometimes my buttocks that really get to me when I'm riding.

I was diagnosed age 12. It all started off with my fingers and thumbs being put out of place. Was told I am destined for arthritis. It's the most debilitating thing, that people really don't understand and never really can unless they have it.

Today's current pain is my jaw and right knee! Actually having a rather good day!

I'm so glad to hear I am not the only one who suffers this- thank god for this thread!

All the best and love to you all! The things we all go through for our horses, sometimes I wonder if I am in my right mind... then I remember I'm not.

X

Might just try some Pilates seen as this seems well recommended!

 

[Lintel]

Hiya
I have hypermobility syndrome. I also have physio weekly on the NHS.
Mine is mainly knee's, Hips, elbow's Wrist's and lower back. I am now on tramadol & naproxen for mine.
I have to wear an SIJ (sacro ilious joint (sp)) belt when riding usually with a back support as well. I have worn my SIJ quite badly which does cause me alot of pain.

Riding. First off. Good supporting boots!!!! I cannot ride in chaps and boots, I have to ride in long boots!!! I do most of mine without stirrups BUT cant do sitting trot for too long as it pinches my nerve and I loose all feeling down one side!!
If im schooling in trot I ride as long as i physically can and dont force myself out of the saddle to hard (so my knees dont lock out)
I also have to take breaks every so often as I keep my hands and arms very still and at correct height which really burns in my elbows. My poor mare is used to stopping every 10 mins and is very good with it all!
I haven't been able to ride for 9 weeks due to torn miniscus in my knee
Its going to be agony when i start again

Please feel free to msg me if you like

Snap. I cannot ride in chaps and boots. I have to ride in long boots or my ankles pull out to the side. And "Get well soon!"

 

[TigerTail]

My hips have got really bad recently and my boy is quite wide so that's a real pain. The horrific feeling mid canter and your hip goes- is just describable to anybody who doesn't have HMS.

Recently my buttocks- like my bum bone had started almost to sublux too. I have no idea if this can even be possibly but again it's awful.
I have no back problems(yet anyway) *sigh* it's only my wrists, knees, hips and sometimes my buttocks that really get to me when I'm riding.

It could be your sacroilliac joint giving you the bum pain. Do you see a physio/ gp about it?

Hip going whilst on horse back is a frickin nightmare! I had to get my friend to shove mine back so i could get off, was envisaging a crane arriving to lift me off the top at one point!

I found pilates did absolutely nothing for me, the physio got me into weight training when i cracked my spine coming off a horse, to stabilise my hips and help hold the bottom of my spine stiller, its helped so much

 

[PandorasJar]

I have it and have to say the only time that I have felt okay was when I was rainy regularly. I'd have days where knees would collapse trotting so we'd stick to walk and canter. But the pain is far worse when not regularly riding.
I have tried lots of different painkillers for it and unfortunately the only one that ever worked changed brand after a few months and stopped working.

Pan

 

[PandorasJar]

Riding not rainy. Bloody phone.

Pan

 

[Kinks3]

I suffer from HMS, on a scale of 1-5 (1 being mild and 5 being severe) im apparently a 4. Im 31 but was only diagnosed with it about a year ago. I can recollect through my teens suffering from the problems mentioned below (in response to Syrahs question).

Back to Marley and Me's post - I have always suffered from severe muscle pain, mainly knots in my shoulders and soreness in my lower back - i find i cant do very much without the soreness rearing its ugly head.

As i have other ailments to contend with (pm me if you want to know a bit more) i tend to just get on with things even when im in pain, but I can also vouch that dicofenac does help me when im unable to ignore it any more - perhaps chat to your doctor about any potential pain relief as they will obviously be able to best advise and prescribe.

I look after a small yard of horses and compete in showjumping most weekends, I dont find the HMS impairs me too much but then your symptoms do seem to be much worse than mine.

I was diagnosed with ME aka CFS about eight yrs ago, this can also contribute towards muscle aches and pains though not all doctors believe it exists!

Thankfully I havent been bedridden now for almost five years and am a million times better than before however given that your symptoms are soo severe I wonder if you could be suffering from further ailments which causes you to be in soo much pain?

I hope i havent scaremongered!! I certainly havent meant to but I think if you havent done so already a trip to your doctors may be worthwhile ... I hope this is of some help to you, good luck!!

 

[P4NN]

Hi there
I've not read every post on here but I wanted to let you know I've pm'd you. Don't really want to share this stuff on here but firewall is right I'm here if you want to ask any questions or need a shoulder to cry on.

It is hard but chin up xxxx

 

[Lintel]

@tigertail.
No not having physio, most of ours in this area are usless sadly. Some pain killers and abit of rest, that does the trick for me, its the inconvinence of the "pop"... *sigh*