hypermobility syndrome (HMS) does it limit you?

[Marley&Me]

Hi all need to have a moan.

I am having a particularly painful day and wondered who else has to live with Hypermobility Syndrome and how you manage your horsey life with it.

I live in constant pain, varying degrees which makes me hurt mainly in joints and muscles. knees, hips and ankles are most painful plus lower back, neck and jaw. My knees sublux most days and my ankles are dangerously loose causing frequent sprains, ruptured and torn ligaments/tendons wrists are very weak and floppy.

I love riding but find 3 times a week is about as much as my body can handle and I am in a lot of pain the next day. This can make me reluctant to ride too. So one day riding, one day off seems to work best for me...lucky I have a friend who fills in the gaps for me and likes riding my boy...and he likes her...even better!

I feel like it is a hidden disability. I look normal (well fairly!) I get on with stuff...just at a slower pace and hurting as I go, but it can make me reluctant to do some things....

Getting a horse in from the field doenst make most people think twice.... But fills me with dread....negotiating 9 acres of pot holes and ruts (now hard and solid from lack of rain) means I will roll ankles, pop knees and jar hips with every step...all in aid of bringing my boy in.

Stacking bales of hay....nothing wrong with my upper body strength or my grip....but try lifting a 20kg bale above your head with wrist which cannot stay still.....they flop about and I have no control over them!

Even tacking up is tricky lifting and holding saddle and bridle high up can be hard....hence my horse is just under 14.3hh and my saddle weighs under 4kg.

Right now I hurt from lungeing my boy this morning. Deep sand in lunge pen hurts my hips and lower back, and pain in shoulders from holding lunge line and whip for 20minutes.

Feeling sorry for myself, just wondered who else gets on with it for the love of horses. Apologies for the rant

 

[Firewell]

I think my friend suffers really badly with something like this. P4NN is her user name on here, PM her, she's not always on here but she's very horsey and may be able to give you some advise or offer some mutual support x

 

[Syrah]

I'll be interested in seeing the responses you get. My 5yr old was diagnosed with this as part of EDS (Ehlers Danlos Syndrome) when she was about 18 month old.

She's not in pain with it though.

Is there any pain management for you?

 

[ClobellsandBaubles]

I have this too not quite to the same degree as you though it sounds my problems are mainly in my back, my shoulders, my feet and weirdly my toes they pop out inconveniently!

Hacking for to long in less than perfect stirrup lengths means my legs seize up my hips and lower back hurt from walking on concrete standing still or leaning for too long leaves my back in agony and i get repeated tendonitis and trapped nerves in my shoulders meaning i can't run anymore which gets me down as i have slowly been getting less and less active and i love sports (surfing i find actually helps not sure why) and weird things i find quite painful like writing at a table. It's very variable managed to work for 3 months on a stables and ride every day cycle hike and dance regularly,although i did have to stop for a few weeks due to jarring my back jumping, and yet i seem to be having much more problems atm being a sedentary student. clearly studying is bad for me.

I wouldn't say it limits me an awful lot where riding is concerned as i find the more active i am the more muscle i build up in my back and the better it is and it's been that way for a long time but my shoulders flare up all the time usually with horrendous timing which makes everything else seems worse. sitting trot makes me trap a nerve which makes breathing difficult sometimes and my feet (totally flat footed) kill if i stay out of the stirrups for any length of time. i love lunging but i have to change reins every 5 mins to give my arms and shoulders a break and i have to walk around (would fail my bhs clearly)
I am also famous within my friends for having elastic ankles that seem to be able to bend and pop back in place quite dramatically.

I really feel for OP as people don't seem to understand how someone who is not 'sick' or diseased has pain or someone who just gets on with things best they can can be in any degree of pain at all. Dr's don't do an awful lot as it is such a spectrum some people have no problems at all and there is nothing there to take out or 'fix'. One surgeon told me at the age to 14 to wait til i got old and stiff!!! Physio helps a bit but exercises only do so much and sometimes they make it worse. People keep asking me how my back is and when its going to be fixed etc. which is very frustrating but i count myself lucky that it only limits my riding about once a months the biggest problem i have is ... washing up .. i kid you not this causes me the most pain!! At the moment i am feeling and walking mush like an 80 yo women not a 20 yo

 

[Shysmum]

I'm hypermobile, and have physio every week, and take diclofenic long term. It particulary affects my shoulders and hips,and my bloody back (three ops) and I keep twisting my ankles. Balance is shocking (hence why I fall off, then have to be put back into one piece ). And I have a constantly numb thumb, droopy eyelids and I bruise at the drop of the hat.

other than that, I think I'm lucky tbh, you sound far,far worse than I am. My biggest problem is that I don't know when to physically stop as I simply cannot tell when I'm damaging myself - you know what it's like with horses in the winter. Then suddenly it all gives up the ghost, and wham.

Huge (((((((((((((((hugs))))))))))))))))) to you and other posters.

 

[Countrychic]

I also suffer with this, not as badly as you but have very bad pain in my hips, knees, wrists, back and shoulders. I'm 26 and the pain is like having a permanent headache. I try not to mention it because people think I'm whining but I am currently riding 5 a day and look after 9 on my own and it's fair to say I'm crippled. I don't bother with pain killers because they don't touch it and eventually I just feel sick

 

[Shysmum]

I really do recommend the diclofenic http://en.wikipedia.org/wiki/Diclofenac.

It helps me loads, and I just get it on repeat pescription. Sometimes I don't need to take it, but atm, it's working a treat. Hubs also takes it for his joint pain.

ps, I don't "do" trotting on roads, cos it hurts me, let alone shy..

 

[Stacey6897]

I tend to dislocate fingers and my toes feel like they're popping out, I managed to dislocate my shoulder, but it popped behind my scapula instead of just out so I was immobilised in a bodycast for 6 weeks, I haven't asked the doc about hypermobility but I'm guessing my joints are a little looser than most

Anyway, for me, my good news is it seems to be getting better with age, I do a lot of road walking as my horse isn't quite sound for riding so I don't know if that helps. I wear decent trainers that support my feet as otherwise my knees and ankles hurt

 

[Sprout]

I have HMS but was only diagnosed a few years ago, having been told for many years that I was clumsy etc!

I have had loads of ops on my knees which has actually made things worse - the surgeon got it wrong trying to realign my knee caps and now the tracking is even worse, causing a wearing away of cartilage in some places and bone spurs in others, so I literally have bone rubbing on bone. My knees are constantly agony, always giving way and subluxing. I also had RSD in one after a fall.
My shoulders sublux at night when they feel like it.

I have constant lower back pain with referred stomach pain.

I have ulna nerve entrapment in one elbow which has caused permanent nerve damage in my hand.

I broke an ankle when my knee gave way.

As you said, even just bringing a horse in has given me ankle damage, a fracture/dislocation of a finger when the horse pulled a bit ...

Oh, there is loads more stuff!
Riding is agony and I now feel VERY insecure as even a little stumble can leave me doubled up in agony, and every day chores like mucking out are slow and painful.

BUT, I would be without my horses, and will keep going as long as I can.

Feel free to pm me any time if you want a chat, and well done for coping so well with what is a very misunderstood and debilitating syndrome. x

 

[Syrah]

I admire all of you for what you do, you've not given up, just carried on.

I must say, the paed we've seen with my daughter hasn't mentioned anything about pain or the struggle this condition seems to bring.

Can I ask what age you all were when it started causing you pain?

 

[Becca-84]

I'm 27 and suffer too. Not as bad as OP but I have torn ligaments in both ankles (one when I was 3, one at 16), I can no longer run, because my ankles just give way, couldn't do Aerobics in PE lessons at school as my hips dislocate, they click all the time and walking over uneven ground my right hip especially will suddenly slip out sideways which hurts. Last year I tore the meniscus cartilage in my right knee, just standing up from the sofa and twisting it slightly. I have RSI in my wrists and double-jointed fingers. I have Scoliosis (curved spine) which gives me a lot of pain after riding for a long time.

One thing I found really helped me was a Tempur mattress - my shoulders and hips no longer ache in the morning after lying on my side all night. I also wear a wrist support, knee support when I ride, and back support if schooling, plus ankle support if riding in short boots. The worst is in winter, when its cold and damp. Then I ache, kind of like a dull headache pain, in my knees and hips mainly, all the time.

I take Glucosamine supplements, which has helped a bit, and on bad days I take 600mg ibuprofen (standard dose over here). I have suffered with it from a young age but the pain only started becoming noticeable and restricting me at work etc in the last 4 years or so.

 

[Sugar1987]

Hi, i don't have HMS but have quite severe Crohn's disease and can sympathise with your struggles, especially when everyone thinks you look "well." I have joint problems that come with my Crohn's and am on a form of maintenance Chemotherapy which makes my bones very weak, dread falling off, managed to crack my sternum just before Christmas in quite a pathetic fall. It is a struggle caring for a horse but i have been so much better since i got her, would rarely leave the house before, she doesn't look at me in disgust when i throw up on the muck heap!
I also find riding quite painful at times and sometimes she spooks at the horrible noises coming from my tum!
Although it can be a physical strain for those of us with chronic conditions the psychological benefits of a horsey friend can be the best medicine.

 

[Dizzydancer]

Hi all!
I am about to graduate from uni, i have studied physio. My final placement was based in a rheumatology outpatients.
I saw a few patients who have hms and was also diagnosed with it myself! I am lucky and suffer little pain except in my knees after standing for a while.
Try going on the HMS website it is very useful and informative! It is quite new that consultants are actually diagnosing this rather than it being growing pains or clumsiness It is a condition u need to self manage. From the sounds of it OP you could do with a physio referral. Basically most people just need to work on ways to avoid going to the end of their joint range, strengthening muscles around the weak joints. Don't do contact sports. Try to find ways to do activities within a middle range of joints such as using your arm/shoulder to open doors instead of your wrist which will bend back.
Some people require regular pain killers as shysmum said. Aswell as some requiring insoles or splints for v weak joints as you build the strength.
OP if you want to pm me about it in more detail feel free. I hope you can get some selfmanagement going though. You should eventually be able to lead a normal life. Ps can you let me no your age at diagnosis out of interest.
Also i can't see the name of the poster who's child has been diagnosed read on hms website it will help answer many of your questions! You should also push to get to see a physio to get ontop of it sooner rather than later! Again pm me if you wish. Good luck X

 

[Marley&Me]

Hi all

Well glad to know I am not alone! Life really isnt that bad, though I was on a downer earlier! Apologies! I have lived with it my whole life and dont know what it is to not be in pain of some sort. It varies from the mild "headache in my hips" to "cant move my hand to pick up the remote control and change the channel it is so bad kind of agony".

But more better days than worse days. I really wasnt looking for any medals when I opened this thread. Simply to find out how many of us "bendys" are out there and coping with our horses.

I am 31 and was diagnosed 2 years ago (by my daughters rheumatologist). I have 3 children. 12, 6 and 2. My 6 year old is the worst...worse than me. All my kids have reynauds too...though I dont. My 6 year old was diagnosed with cerebral palsy, dyspraxia and finally HMS. Turns out that HMS is all she ever had it just took a while to get the right diagnosis. It was the physiotherapist who diagnoses her and sent us to the rhuematologist...who in one afternoon diagnosed the whole family! I showed him that I can still do the splits and put palms on the floor with legs straight and a few other EMS party tricks....so it wasnt hard. Since then we have done Great Ormond Street and regular physio.... the pain for the kids is awful to watch but nothing helps more than physio.

My 6 year old couldnt walk up the stairs or out to the car when she was 4 and was still in the buggy at 5. Now she does 30 mins of physio (with me) 5 times a week she is virtually pain free and a normal kid (apart from the Reynauds). However if she ever gets flu or ill and sits on the sofa or in bed for a couple of days her muscles waste immediately and she becomes soooo weak. It takes about 10 days to build her back up to being virtually pain free again

I have co-codamol on repeat prescription....this is great as a muscle relaxant too....though can be addictive and I take ibuprofen at the same time. But I cant drive when I take co-codamol. So I try to stick with Ibuprofen. I cant do diclofenac as I have had trouble with stomach ulcers/gall bladder before. And the diclofenac I took following each of my 3 c-sections was the suspect for the stomach ulcers....mind you the ibuprofen is not good for that either.

I first got proper symptoms age 11. (though before that knew I was "double jointed" and used to be clumsy and achy as a child). When I was 11 I was putting a pair of brushing boots on my new forest pony and subluxed a knee for the first time. How scary that was, all on my own! Popped it back in and it has happened regularly since. I also used to get serious injuries even from minor falls. Dislocated hips, fractured wrist 3 times (different wrist once), whiplash (everytime I hit the deck) plus the fingers and toes popping etc etc.

I fell off back at xmas time twice when trying out new horses. I popped a hip and had pain in my pelvis for the next three months. I always fall off the same way. (Over horses right shoulder , head over heels and onto right hip.)
The bruising was nice!

People are right about it being a spectrum condition. I think we can have days on various ends of the spectrum too and dont always stay the same. Winter is much worse...or damp days. Dry and summer is great, apart from hard ground means concussion on joints.

To the lady with the daughter with it....

I hope your little one is ok. You might find the pain comes on at puberty in girls if not before. As the "mummy hormones" are what makes life worse. The hormones which make us stretchy in order to carry and give birth to a child make HMS worse. Kids with HMS often have constipation too, as well as reynauds, and food intolerances.

....oh and if she cant sit still on a chair at the table or to watch tv or figits when she sits on the carpet for her teacher....DONT tell her off! She is in pain! But doesnt realise it as it is "normal" to her. Kids with HMS express the joint pain as figityness. Get her a bean bag and watch her sit still. Also tempur matresses CHANGE lives!

My 3 are HMS bendy, constipated with blue fingers and toes most of the time and cant eat ice cream (dairy intolerance). But they are always smiling...and so am I.

Thanks for the offers of the pms. I may just do that.

And good luck to all you guys also putting up with being bendy and still enjoying your horses.

 

[yellowdun]

I have a long acting anti inflammatory each day to help me with this. My probs are roughly similar to yours. Endurance stirrups sometimes help. If I ride for long periods my ankles are so rubbish and then it all goes numb. I have months or being reasonable then months of everything going to pot. My saddle now has cushioning in the seat which helps a little too. Regular massage can be helpful as well as physio. I use a lot of tubigrip and when I have had bad flareups in the past I have ended up with steroid injections. They may not be ideal but when the pain is bad, I really dont care as i will try anything.

I agree that rutted fields are awful though- much worse than riding. I used to steward at shows a lot but I cant do that now as it sets my back off.

Ideally I need a groom who will catch and tack up my horse so I can just ride and that will help the pain hugely Just need a lottery win.

 

[cally6008]

I have Hypermobility Syndrome with fibromyalgia and IBS as secondary components of it.

It has taken me 7 years to finally (woohoo , cue rushing around emotion) get to see the Senior Physio at local hospital who asked me "who have you seen about this" to which i replied "no-one" ..... (mainly cos GP docs rubbish and wouldnt listen to me)

Anyways .... have only skimmed through this topic in brief but one thing stands out, the diclofenic post

It is definitely worth me pointing out that (like horses, every horse is different) diclofenic will work for some people and not others and you can't take it if you have any stomach problems which will rule out some (not all) sufferers of IBS

If anyone is in the Cumbria region, please get in touch as I am one of the Cumbria co-ordinators for Cumbria local group.

 

[ClobellsandBaubles]

....oh and if she cant sit still on a chair at the table or to watch tv or figits when she sits on the carpet for her teacher....DONT tell her off! She is in pain! But doesnt realise it as it is "normal" to her. Kids with HMS express the joint pain as figityness. Get her a bean bag and watch her sit still. Also tempur matresses CHANGE lives!

.

some of us don't grow out of this i'm the one in the cinema/restaurant/lecture theatre you don't want to sit behind
i want one of those mattresses and pillows they sound amazing!!
to the lady whose child has just been diagnosed it really is a spectrum the only thing my parents noticed when i was growing up was when they used to play a game where they would swing me by my arms my shoulders popped out and i tried roller balding once and couldn't move my back for a week thin i got off very lightly despite being made to do ballet which really did not help
really glad there are other people just getting on and riding you would not believe the looks i get from people when i say i'm going riding ' oh so your backs better then you were just making it up/ moaning about nothing'
cally6008 i half live in cumbria do i count

 

[cally6008]

cloball, yep you count our area is from barrow in furness right up to scottish border and into dumfries N galloway cos other groups further up scotland

there's 3 horsey members as well

 

[Syrah]

Thanks for the responses.

My daughter was diagnosed when we were referred to a paed as she wasn't walking and her feet were wonky. He did the tests - amazed me when he was able to bend her fingers right back.

She doesn't complain of any pain but is incredibly clumsy. She used to see a physio regularly but we (as in her drs and us) decided to stop that for now as she has other medical stuff going on and wasn't coping well with all of the hospital visits nearly every month.

She's very lucky to have been diagnosed very early in life and fingers crossed she'll be one of the lucky ones not to suffer the pain some of you do.

Amazing how well you all cope

 

[horsimous]

Hi Me and my sister have problems to different degrees. I was lucky in that my knees stopped popping out when I was a kid. Tho when I was a teenager I went through a spate of painful knees and went to a doctor who said I needed to do certain exercises and if I didn't do them then "this " will happen - cue stupid a** doctor pulling my kneecap round to the side and me nearly fainting. I did alot of sports, was very fit and somehow got away with it. I do however get RSI, painful joints and muscle problems in my shoulders and something in my wrists gets pinched if they get pulled "out" and don't go back properly. I used to get the problems with my toes too. I have back problems and find that tempur mattresses are a definite no no as they make my back very unstable and I have alot of trouble just getting off them after having a try to see what they are like. I go to a fab chiro and have shoe inserts.

My sister has it alot worse. Her knees, shoulders and hips sublux (as well as fingers etc) and she is often in a lot of pain. Trouble is when she does try and get any treatment she is not always informed or treated very well, so much that some of it sounds barbaric and it's put her off trying to get help. Sometimes when her knee has subluxed they will put her leg in plaster cast from ankle to hip for what seems like a few months. As she has become less and less mobile she has put on alot of weight and this has made her very limited and in more pain. It's a vicious circle, affects her work and will probably mean she will be in a wheelchair fairly early into her life. Despite this she is determined to live life to the full. I'm just lucky it wasn't me cos I wouldn't be able to have a horse if I was her.

 

[shortstuff99]

Hi, its interesting to hear about people who suffer from HMS and ride aswell! I have suffered with this condition all my life and its good to realise that i'm not so alone. I also feel that many people can't understand the problems that this condition can cause. Because I am young and look healthy people seem to thik that I am either making it up or exaggerating the pain! This was even true for my doctors. When I said that I was struggling to walk for longer then 10 minutes without severe knee pain he just told me not to walk! :O lol.

I have problems with all of my joints but my knees are particularly bad and I often have problems with my sciatica. I find that its best not to stay in one position for a long time and to have regular breaks if walking far. As for riding I feel that it can improve me in that it helps with my core stability therefore stregthening my back. I ride long to as not hurt my knees and if jumping then I just tend to ignore the pain and carry on. At the moment I am abroad doing research but I was riding six days a week. I refuse to let the pain stop me and I refuse long term pain meds (even though I should take them). Diclofenac didn't work for me as I have v. bad IBS and this really bothers it! lol If the pain is bad then I take Tramadol but I prefer not to!

But the best thing I find for HMS is PILATES! It really works and is amazing for stabilising the joints.

As for the posters for children with HMS my sister has it (not officially) and she has no pain whatsoever! I think the pain is on a case by case basis, but I feel mine was made worse by being extremely sporty. I use to play a lot of hockey and I think this is what contributed to the knee pain!

xx

 

[Tnavas]

(((((HUGS))))) to all of you. You are all amazing and I promise I will never grizzle again about my grumpy hip - which is just the result of old age creeping up.

 

[HorseyLyn]

I have Fibromyalgia, Chronic Fatigue Syndrome, Allodynia, hypermobile joints, migraine..... The lot!
Due to chronic back pain and keep twisting my pelvis (when I wasn't as decrepit) my McTimony Chiro said the only way to stop keep twisting my pelvis and dislodging vertebrae was to change my lifestyle.... Which I have, I don't ride horses or have any fun whatsoever and my health has got worse now. I feel it's because my body "gave up" once it had nothing to look forward to.
I can't even stand unaided now to groom Dolly so am after a Shetland who I can sit with and care for.
I know there's not a lot you can
do for hypermobile joints. My o/t had me putting my hands in hot water and gently exercising them.
What pain medication are you on? Pm me if u like. I'm on half of the local pharmacy supplies

 

[shortstuff99]

I find that most painkillers don't seem to work for me! I'm on tramadol and that can help mute it but I find that light exercise and pilates really does help!

Horseylyn I wish you well in your quest for a horse! I gave up hockey due to the knees but I refuse to give up the riding! I will keep doing what I want and just ignore the pain!

x

 

[Eriskayowner]

Hi.

I am hypermobile in my shoulders (can dislocate them on command (which is great for getting my year 11 students to pay attention)), hips (I managed to dislocate my hip just by standing up when my leg had gone to sleep), knees (heels come off the floor about 4 inches if I'm "straightening" my legs whilst sitting on the floor), and ankles (can stand on the outsides of my feet on the floor).

Therefore I have to be very careful what I do and how I do it. I am not allowed to run ever as I have no grooves for my kneecaps so they move wherever they want and end up locking my knee.

I have twisted my right knee really badly in the past by crouching down, twisting on it and standing back up again with lower leg at 45 degrees to upper leg. Ripped cartilage, tendons and ligaments.

I ride with Dublin flexi stirrups which really help me to not be too sore after riding.

My pelvis is also not quite at the correct angle either - because my knees are so far back my pelvis tipped forwards so my lower back is much more curved than it should be so very prone to slipping discs etc.

It's a fun life!

 

[Snowysadude]

I havnt read all the replies sorry but I also suffer quite badly from hypermobility syndrome, got 9/9 on the scale. I do know exactly how you feel and live in constant pain - am on the strongest pain killers I can have and still be leagally allowed to drive etc and they often dont work. Havnt really found anything that has, all the physio and also pilates hasnt really helped as doing the movements to strengthen some parts of my body puts so much strain on other parts that its almost pointless!

I have 2 horses and work on a yard but have been hypermobile since I hit puberty so have slowly learned to live with it and have a very high pain threshold (tore both of my hamstrings and didnt realise so was still walking and living with it for example) - am just 21 now (as of yesterday ) and do feel like I wont be able to continue with my chosen line of work forever but enjoy it so much I will for as long as possible. Like you I am also physically well muscled its just my ligaments that let me down!

 

[ClobellsandBaubles]

well currently starting my musculoskeletal block at uni so i will do as much reading learning as possible because i have got the impression there is a definite gap in the medical profession so any suggestions would be appreciated

 

[Hacked_Off]

Hi.

I am hypermobile in my shoulders (can dislocate them on command (which is great for getting my year 11 students to pay attention)), hips (I managed to dislocate my hip just by standing up when my leg had gone to sleep), knees (heels come off the floor about 4 inches if I'm "straightening" my legs whilst sitting on the floor), and ankles (can stand on the outsides of my feet on the floor).

Therefore I have to be very careful what I do and how I do it. I am not allowed to run ever as I have no grooves for my kneecaps so they move wherever they want and end up locking my knee.

I have twisted my right knee really badly in the past by crouching down, twisting on it and standing back up again with lower leg at 45 degrees to upper leg. Ripped cartilage, tendons and ligaments.

I ride with Dublin flexi stirrups which really help me to not be too sore after riding.

My pelvis is also not quite at the correct angle either - because my knees are so far back my pelvis tipped forwards so my lower back is much more curved than it should be so very prone to slipping discs etc.

It's a fun life!

I had never heard of this syndrome till this thread, but reading all these comments has made me think. I've always thought i was just double jointed and clumsy, but i've just done a hypermobility test online and got the top score. I can also can stand on the outsides of my feet on the floor, and my knees and ankle get very painful when i ride. I'm not as badly affected as some of the posters, but is it worth going to the doctors or just putting up with it?

 

[cally6008]

It is definitely worth going to a doctor and getting "official" diagnosis as once you get that, you should be able to get physio referral and then if u need extra help later in life, it is on your medical record

 

[shortstuff99]

TBH though the Doctors wont do much for you and I find that physio has never really worked for me either. Its best to just manage the pain condition as best you can. I got the top score for the test also and I am hypermobile in all my joints but find only a few cause me major problems so I just manage my activities for those. Hope that helps.

Also apparently HMS sufferers can have problems with spacial awareness which I find interesting!

xx