Horse riding and EDS

Hi everyone, is there anyone else out there who has EDS and still rides horses? I own a horse and am finding it increasingly difficult to ride. Lately, I have had to cut short amazing rides because my knee subluxes or my back goes out and I can't sit up straight. Is there anyone else having these problems? What do you do? I haven't found a knee brace that would work for riding does anyone have any suggestions? Thanks!

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You could try a Don Joy knee brace for support. I have ridden in it. Depending on what part of your back is the problem. I have ridden with lycra regular waist pants under my jeans. It keeps my si joint in place. I hope this helps.


Sue

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I rode for the first 15 years of my life. In the end my back pain was so bad I couldn't even get on my horse without assistance. I am pretty certain all that riding, plus falling off, is what caused the very early onset of disc degeneration and osteoarthritis. I had my first slipped disc age 10. As much as I adored my horses and loved galloping on the beach I wish I could go back and change the past - I would stay as far away from horses as possible.

But the stupid, idiotic doctors told me to get back on my horse and carry on after my first slipped disc, they said it was "good for posture" and would help keep me fit. Perhaps in a normal, stable spine this would be true. For me it just sped up my decline and made everything worse.

It totally broke my heart when I gave up riding at 15 and saw my horse loaded in a box to go to another home. It took years to get over it and it was a HUGE part of my life. I had my first pony age 3 and I spend my entire childhood going to pony club and competing.

But horses are animals, and it's never possible to be sure you wont have a nasty fall and hurt yourself. I know many, many people without EDS that have life altering injuries from horse riding. For us EDSers with our fragile joints even one nasty fall can mean a lifetime of pain. I dislocated my collar bone on one fall, and it's never been the same. The shoulder on that side is still painful 15 years later.

You might be lucky and never find yourself in that situation. But from your post it sounds as though it's already taking a toll on your knees.

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I had been riding horses in the past.... but have strict Dr.'s orders that I am not to ride any longer. :( It's such a struggle for me. I've rarely even been out to the barn where we board him to groom - leaving that task to my husband. He hasn't ridden his horse either now since it's not fun, nor safe, to ride alone. I am so terribly sore and tired to do even the slightest horse-related task, but when it comes to even discussing selling "my baby" I fall to peices!! I just can't go there yet!! I still hold on to the dream that some day somehow I will ride again. I know a fall will be absolutely disasterous for me, especially with my horse being so tall - 17.2 HH!! But, I love him so much and it breaks my heart to just see him and I'm sure he's wondering why also!! I'm a firm believer in the power of horse therapy - so feel that even if I can spend time with him to groom, smell, hug, love, etc..... maybe mentally I'll feel better with my overall emotional well-being. I just haven't felt well enough to make even that step.... but hopefully soon!!! I need to see him!! I have knee braces (strong metal sided ones) and a SI belt, wrist braces, etc..... but I'm sure I can still get very beat up if I take even the slightest fall. I would only do arena riding - and walking, not trotting or loping (even though that would be my wish)..... at this point I would take whatever I could. I understand exactly where you are at missing your horse riding days and missing your horse. I wish I had better answers for you. Right now I am still living in the land of denial.... when it comes to my horse anyway. I've excepted my limitations with everything but my horse. When it comes to him - I'm stubborn. Can't sell him!!!!!

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Wow, I am so sorry you had to give up riding. I know how hard that is. I had my first horse when I was 13 and was forced to give her up when I was 17. Looking back, I am very grateful as she was crazy and I would fall off every time I rode her. I didn't end up getting back into riding for about 5 years after that and the whole time I was devastated and could not even look at, talk about, or watch a movie with a horse. Now I have a wonderful Canadian Warmblood. He is absolutely the most amazing horse and definitely the only horse I will ride now that my joints have gotten worse and I can't take a chance of a fall. Thankfully he is very sensitive so when my back goes out and I don't have the strength to pull on the reins to stop most horses he stops with the smallest amount of pressure and I am able to adjust myself and push myself back into a sitting position. He really seems to know when something is wrong and takes good care of me but I am unsure if riding really is the best activity for us EDSers. Has anyone been told by a respectable source whether it is a good sport or not? I was told not to do really any exercise such as walking, yoga, working out, etc. because of the danger of injury from hyperextending or because the joints will be worn away even faster (I have already been told I do not really have any cartilage left in my knees so walking is pretty much bone on bone now). I feel like riding does not allow me to hyperextend but does come with other dangers. I keep hearing conflicting ideas on acceptable activities for EDSers so I am wondering what you have all been told regarding riding? I was told the only activity I should do is swimming which is not much of an option when you live in CT and only get 3 months of swimming weather a year!

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I agree I could not sell my horse either and horse therapy really is a wonderful thing. My guy is big but not quite as big as yours, he's 16.3 and he's 17 and I have already promised him I will keep him until the day he goes, even if he just becomes a pasturemate. He has brought me so much happiness and I feel safer on him than any other horse I have ever ridden. I do continue to ride. I push myself to do it despite being in so much pain and despite the risks that when my back goes out I fall over onto his neck and could one day fall off. I am trying to really teach my husband how to ride so that on really bad days my horse can still be worked and I will not be killing myself to do it. For a while, I was riding him almost everyday but have recently cut back to about 3 times a week for short periods. I try to lunge him though as much as possible but, like you, everything is becoming a chore and so hard to do. As it is now, I make my husband put on and cinch the saddle for me as it causes too much pain in my wrists and elbows and I don't always have much hand strength. I am glad to see that there are other horse lovers out there with EDS, I wish you all could do what you love because there really is nothing like the love of a horse and the feeling you get while riding. :)

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I have not ridden a horse in 30 years. I never had any natural padding, and I could not longer throw my leg over the horse. I either did not have the strength or else my leg would try to separate from my torso (have frequent groin pulls). Riding literally shook up my insides, too. I always thought I would have a palomino or a paint but finally gave up due to my condition. I would have never been able to saddle up, either.

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Girls I say ride, ride, and ride some more. Don't you just get tired of this disease telling us what we can and can not do? I know I do. I have 2 horses and a pony for my nieces and nephews. I don't know what I would do without my horse. Just ride easy and listen to what your body says. I feel my quality of life is just as important as the quantity. Gentle riding ;)

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Puppygirl, I too love horses. My dad was a farrier and I grew up around them. I sat on my first horse very young in life and we almost always had 1-3 horses while I was growing up. I was the only one to ride and yes, it was definitely therapy! My outlet for emotional pain and rejection. Riding like the wind on my best friend seemed to help all the hurt melt away. My dad much preferred a wagon or buggy which really did nothing much for me : ). When I was 19 I gave up my horse for a car so I could get to work. It broke my heart and I have only been on a horse a couple of times since then and in a buggy and a stagecoach a couple of times. My husband gave me a gift card for my birthday last year for rides at a nearby stable. But as much as I would LOVE to ride, this body hurts to even think of trying and I didn't go over, thinking it would hurt worse to see the horses and not be able to ride. It would be soooo nice right now to feel my cares melt away.... For now I have to settle for dog therapy. Not quite like getting away on a horse, but much better than nothing. I lost my favorite dog of all times last week to cancer so that has been a real bummer. Howeverk, I have one dog left who makes an excellent therapy dog. A few times in my past I have recovered healthwise for a short period enough to be able to do some of the things I loved, but each time the recovery period has been shorter and further in between. I wish you the best!

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If it is too painful to ride, perhaps it is time to switch to driving. Much much easier on the joints. :)

I don't have EDS, but due to the gastroparesis I do not have the energy to ride. Driving is one option I am considering.

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To Ceindig and Puppygurl21, thanks to both of you for bringing this up;
I'm new to these boards, by the way, but not to EDS, so hello to all of you!! :)
I was considering taking this sport up, and lately have been having my discs slip - just like my late mother whose own problem was chalked up to a fall from a horse that had been spooked before she got on, in her childhood.
So maybe I seem extra nuts for having considered it, wondering as I went off to sleep last night if there's any way around this back problem I'VE just developed, to try it out.
My last thought before sleep was..."Ok, Mom was the parent with EDS and I never knew it!"...and now, ceindig (sp? or is it Ceindeg? sorry..) because of your knowledgeable replies and your sad experience, you've saved me and a lot of others a lot of pain of all kinds. I'm sorry for what you went through, and all my best to both of you and all EDSers looking for a better life in all discussions here at Inspire.
Remember, as my mother used to say - and I found this note posted to the fridge after her death - "You are doing better than you think you are".
Just keep on keeping on, especially on your bad days, and know that's good enough!
- Talitha.

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Talitha_K thank you so much :-)

I had a note on my bedroom wall as a teenager, it read "everything will be absolutely positively fine"

I think your mother's saying is more appropriate for my life right now! I will have to get that one up somewhere.

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Sorry to hear you're having problems continuing riding, but never give up! I work out tirelessly both to counter the EDS in general as well as to enable me to keep riding. I show horses at Ohio State and it's taken a lot of time lifting weights to be able to jump, but I owe it to my love for horses, my determination to keep riding no matter what, and my good fortune. I really believe riding is so good for us, not only physically (i.e. equine therapy), but also emotionally. It is my only salvation sometimes with my workload, and I'm so grateful I've been able to continue riding, and that I have really responsive coaches that understand my challenges.

I sometimes where a donjoy brace when I ride for lateral patellar translation, but I ALWAYS ride in breeches and that is what makes it possible. Even a simple sleeve with a buttress to keep your knee from subluxating is better than nothing, and can fit under loose jeans if you do ride in jeans.

Your horse sounds wonderful! Back in high school after having to take a year off for a spinal injury, we found a Hanoverian for $600...he was the most wonderful thing that has ever happened to me. He colicked a few weeks before I started at Ohio State, but he gave me the courage to get back on and was so caring and unconditionally loving. We're so lucky to have horses like that! :)


I have problems with longeing, so I've found that round pens make it still possible for me to longe, as I have two somewhat crazy horses that I can't always ride and need to burn off energy. I don't have a round pen, but I close off a corner of the pasture with temporary fence and it makes a great little round pen for longeing. Being able to free longe in that space takes the pressure off of my wrists and shoulders!


Good luck with riding, and never give it up!

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Ceindeg: Nice that my Mom's saying will live on!!
All: Because of when I typed my note in this thread, I didn't see all replies regarding puppygurl's dilemma, so I want to thank every contributor too, as a spectator.
It must be a hard decision for all of you to make.
My only opinion would be to listen to your Dr.s, your bodies, and your hearts, as we are all different, that's true enough.
God bless, all, and good luck puppygurl!

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puppygurl21,

I know the feeling! I have EDS type 3 and I have had major knee surgeries on both of my knees, so all that makes riding very painful. Have you tried riding with your feet out of the stirrups? That sometimes will take the pressure off of your knees. Also, have you tried riding bareback? Although bareback riding does require core strength and balance, it eased the pain in my knees, and it is easier than trying to saddle up. BUT my horse is very calm and dependable, so please make sure you trust your horse before you try going bareback. My spine dislocates all the time; my doctors are pushing core strength and core strength. So may I suggest core strengthening?
Also, I know my posture was a big problem. I was constantly squeezing my knees which put constant pressure on them. When I realized what I was doing, and relaxed my legs that helped with some of the pain.
When I don't have my hips "under" me and I don't keep my back straight (not stiff but straight) my back always hurts more.
Yes, there are a lot of risks working with horses. But the way I see it is I tore both of my hamstrings just getting up off the couch, why not get hurt doing something I love. Yes, you have to be careful around them, but you can't live your life in the fear of "what ifs".
No, I can't ride as much as I would like, but when I do get to ride it is worth it.
I hope this helps.
Stay safe, but have FUN!
Emily

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Hi all,
I am quite new to this theory of "acceptance"... sucks big time if you ask me!
I am a colt breaker/ performance rider. I started complaining about the pain when I was 10 (from what I can remember) but no one took any notice.. I don't know if I have Dysautonomia in JHS or EDS. They all seem so conflicting and no one seems to agree on anything with either of them.
Anyway, I was pushed to seek help as my spine has become affected in the last few months (which has really got be worried) and my entire body seems to be deteriorating at lightning speed. I have no issue with skin, however, my hips, knees and ankles displace regularly and a toll is certainly being taken on my internal organs/ systems. I dislocated my knee from a stand still, because I believed my doctor was overreacting (apparently not). If it weren't for the sudden increase in severity, I would have gone on seeing no one and living out the rest of my days inebriated on codeine and tequila and not having to face my fears.. ... .. wishful.

I won't be stopped from riding. They might as well turn me into a dove and clip my wings. I am not sure the point of my signing up to this site, I guess I hope that understanding it all a little better, may help me sleep at night - not so far!

I was training 1.30m when I was 18, having focussed on dressage over the last few years, and having returned to jumping on the recent acquirement of quite a talented young Sir Donnerhall mare, I have found that I can no longer ride short for more than half the arenas length without flinging my feet out of the stirrups to relieve the pressure and pain built up in my pelvis and knees. It's a killer!

Jumping may be out of the question for me, evidently. However, while I can stick to a horse like shit to a blanket, I'll be doing it, displacements, nausea, aching, cracking, crying, or not.

Obviously my experience where the management of EDS/ JHS/ ??! in a healthier way is concerned, is lacking.. Does anyone have any suggestions as to pain management? I would so greatly appreciate any advice.

Don't give up Puppygurl, we live once. Don't let it take the life out of you. :) :) x

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Hi murphies law,

Have you heard of a drug called losartan? There hasn't been much research on whether or not it prevents some of the joint displacement but it may be helpful.

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Riding can be hard on your body but if done in moderation it can be done. I figure that the pain is worth being able to ride. I ride for short times and when I am done I rest. I don't ride frequently but I enjoy it when I do. I ride western, there is more saddle under you! I like barrel racing but have decided that a gentle trail ride is much better for me. I still ride around the barrels but at a slow pace now. I often hurt like he**, but then I remember how much I loved that ride and lie down and day dream of being on that horse and it is all very worth it. The horse I ride is older and practically 'bomb proof'...a horse is still an animal and they get scared but this guy is very sensitive and steady. I say keep riding but modify it so you aren't loping or trotting alot. The donjoy brace is nice and I wear it over my jeans most of the time. A lumbar support is a big help too. Get out and do some stuff that you like to do or your depression will criple you just as much as this disease will. Good luck.

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my daughter did PT from January of this year until June. She's been doing a long list of exercises every other day at home since. Joint pain and subluxtions have decreased significantly. So... She has done 2 trail rides this summer at a nearby stable. (once a month so far) So far, she's loved it. Western with more ease/length to the stirrup so her ankle doesn't bend so much. She wears an ASO ankle brace and a knee brace. Walk only. She doesn't ride for more than an hour. The stable owner thought a smaller barreled horse would be better for hips. She has had some muscle soreness after each ride but she described it as a good "unused muscle" workout sore. She thought her SI joint was out a bit before her last ride but felt GREAT when she dismounted at the end. Mom here is concerned about a fall. But mom here is also concerned about a 17 yo whose life can revolve around school, PT exercises which can take all day because of POTS and EDS, and feeling lousy in the heat every day. The girl has to be able to do something!! We're taking it one ride at a time.

Dr. Brad Tinkle, author of the Hypermobility book, mentions that riding is an excellent core strenghtening sport but you have to stay on the horse. Duh.

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ride! I have a 15hand tennessee walking horse. I use irons that are flexible on my english saddle, or bigger endurance stirrups on my western saddle. (both of which are synthetic - lightweight and comfy) no more longer rides for me, but I do try to make easier short rides to be honest. makes for good physical and mental therapy :)

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Hi All,

I love this thread because as someone else said, it's always been my dream to learn to ride horses. I'm 42 and I'm still waiting. PuppyGurl, I, too, have no cartilage in my knees after double knee surgery when I was 18. I was a dancer my whole life and after the surgery my docs said if you don't want to be in a wheel chair when you're 40 you must stop all activity. Well I was stubborn and like you all are with your horses, I was with dance. It defined who I was and was what I turned to during times of crisis. So I continued for another ten or so years off and on and then finally had to give it up. Everytime I tried my legs would swell terribly, which would float my kneecaps and then dislocate them. I was diagnosed last year with classic and hypermobility and I'm still not in a wheel chair but somedays I feel like it's coming. Every day I wish I could dance, and if there was something that I could do or wear to allow me to do it, I would. So like someone else mentioned, listen to your doctors (although I find they're the last people I listen to) and most of all listen to your body. Follow your heart as long as you can, but be as safe as possible. I too don't want to give in to this darn disease. So much gets taken away from us. I like what someone said about hurting themselves getting off the couch, so you might as well do it doing something you love. I wish you all the best of luck. Maybe one day I will be writing about my horse experiences. One can dream. :)

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