Joint hypermobility

[dontskipthecafe]

My joints are stupid.

This issue was diagnosed when I was 14 and my left knee started giving out. I’d always had various joint pains and my arches and ankles are collapsed, but we pretty much managed the arches with orthotic supports and shrugged in bemusement about the rest.

I went to an orthopedist, physical therapy, etc, and the problem was identified but never resolved. All of my tendons and ligaments are too stretchy, and so they move too much, hurt all the time, and don’t function correctly. I severely deteriorated my meniscus because my chosen sports (riding, skiing, fencing, and track) were not helping, but I never had surgery.

It was exacerbated when I tore my ACL in my right knee in March 2013. Had surgery that June. It’s been two years and I am a mess. I get off my horse and I’m staggering. Friend suggests that a TKR would honestly be more effective than attempting anything reconstructive again.

It has gotten to the point that I can’t ride regularly. I haven’t ridden in a week partially because the last time I did, I had to resort to leftover Percocet when I got home.

I’ve been told in the past that I’m essentially defective and there really isn’t anything surgery can do because they cannot replace all of my joints. Does anyone have experience with this? Exercises that helped you, medical stuff, or am I just screwed? I have tried orthotic stirrups (MDC Ultimates) and while they helped for about a week, I’m now just as crippled as I was using $10 safety stirrups.

[arlosmine]

I am hyper mobile…and have been living without any ACL’s in my right knee for about thirty years. I never had surgery to fix it, and I just don’t ski, skate or run. I have also dislocated my shoulders more times than I can count, and now know how to get them to slip back into place when they subluxate.

I am a dressage trainer, and find that the longer stirrups are less likely to mess with me knee. If I was still doing a lot of jumping, I’d be royally screwed. As it is, I can do some jumping, but being in short stirrups over larger fences for more than one school a day would be a deal breaker.

The most helpful thing for me is to stay strong muscularly. If the ligaments and tendons don’t stabilize a Joint, the muscles can help do it. I have a pull-up bar and use it to keep my shoulders well muscled.
I will probably have a knee replacement at some point, but I am mostly pain free and will wait until it’s really an emergency, since new knees only last so long and I don’t want to tempt fate and have that done twice.

I DO NOT DO YOGA!

I suggest that you find a sports medicine MD who is familiar with Hypermobility, and then find a PT (who has a track recode with this) To strengthen your muscles correctly. Regular Drs don’t seem to “get” Hypermobility. One of my mew students (a 10 yr old kid) showed up a month ago…her mom announced that she was “double jointed”, and she is very hyper mobile. They had never heard of it, and had no idea that the kid was more prone to injury because if it.

There are varying degrees of Hypermobility, and it sounds like you’ve got a pretty robust case. You don’t say how old you are, but I’d get very educated about your condition, since the general medical community isn’t so helpful! Good luck!!!

[dontskipthecafe]

[QUOTE=arlosmine;8173173]
I am a dressage trainer, and find that the longer stirrups are less likely to mess with me knee. If I was still doing a lot of jumping, I’d be royally screwed. As it is, I can do some jumping, but being in short stirrups over larger fences for more than one school a day would be a deal breaker.[/QUOTE]

Jumper here I love jumping, always have, and I think riding with my stirrups short has not helped me. I’ve tried riding with them longer, and that helped for a while, but I can only go so long before I feel like I’m reaching for the stirrup and getting distracted.

[QUOTE=arlosmine;8173173]The most helpful thing for me is to stay strong muscularly. If the ligaments and tendons don’t stabilize a Joint, the muscles can help do it. I have a pull-up bar and use it to keep my shoulders well muscled.
I will probably have a knee replacement at some point, but I am mostly pain free and will wait until it’s really an emergency, since new knees only last so long and I don’t want to tempt fate and have that done twice.[/QUOTE]

I was very strong before my ACL surgery; unfortunately, it put me out of commission for a while and I lost a lot of tone. I have gotten much stronger since I got my mare and started riding more. I also do PT exercises, though I can’t afford to keep going to PT appointments regularly. The closest I get to pain free is Percocet, and I really do not like taking it. It’s extremely uncommon that I resort to heavy-duty medication. My knees are really the worst element of the whole thing.

@arlosmine;8173173

There are varying degrees of Hypermobility, and it sounds like you’ve got a pretty robust case. You don’t say how old you are, but I’d get very educated about your condition, since the general medical community isn’t so helpful! Good luck!!!

Yeah, unfortunately my case is pretty vicious Another friend thinks I may have Ehlers Danlos Syndrome. I’m only 21.

[Manahmanah]

A good friend did of mine was diagnosed with EDS in her 30s and her daughter was just diagnosed at 14. She is hoping the prognosis for her daughter is better due to early diagnosis. From what my friend says, because of going undiagnosed for so long she has quite a bit more difficulty now than could have been if she knew what to do earlier.

[SugarRush]

I’m hypermobile in almost all my joints with dislocating shoulders, runner’s knees, snapping hips, and I’ve essentially had bouts of tendinitis and then chronic tendinosis everywhere (in addition to other minor things). The best (and only) thing I’ve ever found to work is weightlifting. Not the light weights with 20+ reps, the heavy weights with 8-10 reps. My muscles became big enough to hold myself together and I stopped hyperflexing (my hips stopped snapping, I stopped waking up with a dislocated shoulder every morning, etc, etc). I have tried other things like running, biking, and triathlon. Any endurance training I ever did ended up with injuries. Swimming was ok, especially for shoulders, but heavy strength training has definitely been the best.

[kdow]

I have some hyper mobility (goes hand in hand with the variety of arthritis I have) and the most useful things I’ve found are:

1. As stated, DO NOT DO YOGA. Or anything similar. Most of you does not need to be any more stretchy and any parts that ARE tight (which happens due to stretchy bits over-compensating) you really need someone who is very knowledgable to look at you and figure out what stretch will actually target the tight bit the right amount, rather than just stretching the other bits more. (When my PT wanted me to be able to stretch my lower back a bit because I tighten up the muscles there, she had to work through her entire binder of exercises until she found one where my hips weren’t doing most of the work while my back just stayed as it was.)

Which brings me to 2:

2. It is really really worth finding a good PT, even if you have to pay out of pocket for a couple of sessions to develop a safe and sane exercise routine for you. In addition to helping find stretches that target things that do need to stretch, they will also help with strengthening plans that do not leave you unbalanced, as one of the issues with wobbly joints is that they are even more prone than normal joints to developing issues as a result of muscle imbalance - the knees are a particularly good spot for these problems because there are multiple muscles involved and if they aren’t properly balanced in terms of strength, it’ll pull the knee cap over so it doesn’t track correctly. But all joints are vulnerable to some extent to this problem, so a PT is good because they can assess where you are weak and where you are strong and assign exercises accordingly.

[CHT]

I had a student with this: riding a smooth/easy horse helped her build her strength without damaging her body. She would also ride with knee braces and some sort of ankle support. It helped that her mom was a physiotherapist and the kid did supporting exercise.

[vali]

My daughters and I have Ehlers-Danlos Syndrome and the thing that has helped most is working with a pt who is experienced with it and doing lots of Pilates on the Reformer, as well as light work with weights. Building core strength and the muscles to support your joints is essential. You really need to do some sort of exercise every day to stay functional. My brother has it and is not into pt so much, and he has had both shoulders surgically fixated since they dislocated so frequently. He’s been happy with the outcome.

[Knubbsy]

My trainer and I are realizing that I cannot handle oversized horses when I’m going through PT or the weather turns cold/rainy. Yesterday I had to cut my ride short because all the tension was going into my hip and my ankles were all over the place. I can handle big movers if they otherwise fit my proportions but 5’ on 17+hh big movers just doesn’t work.

I definitely need to wear my orthotic inserts when riding and definitely around the barn (and everywhere else). My joints need all the support I can give. (OP have you ever been prescribed custom ones for your pronation?)

[QUOTE=kdow;8174002]

1. As stated, DO NOT DO YOGA. Or anything similar.

2. It is really really worth finding a good PT[/QUOTE]

Definitely #2. I’ve seen 6 or so PTs in the last decade for lower joint issues. Two I can say were great. 1 was Army trained and because we were already friends from church, could tell me what’s what. The other, I’m seeing now for my ankle, is an athlete with very flexible joints as well. I still shock her with my flexibility but she’s very good at identifying a long list of exercises for different parts.

However, I wouldn’t say that no flexibility training as a blanket statement is a good thing. While my ankles and knees are loose, I compensate in my hips and my flexors are incredibly tight (ditto IT bands). My PTs have been fine with my yoga practice because I pay attention to what parts are involved and I tailor my practice to what’s hurting and my current activity levels.

[SinMiedo]

[QUOTE=Manahmanah;8173437]
A good friend did of mine was diagnosed with EDS in her 30s and her daughter was just diagnosed at 14. She is hoping the prognosis for her daughter is better due to early diagnosis. From what my friend says, because of going undiagnosed for so long she has quite a bit more difficulty now than could have been if she knew what to do earlier.[/QUOTE]

I was about to recommend getting checked for EDS and/or Marfan’s. I don’t know the OP’s body type/height, but EDS was the first thing I thought of when I read this. Marfan’s is another possibility, one with which I’m unfortunately well acquainted, as my mother has it and I’m showing most of the symptoms/have been unofficially diagnosed by my MD.

Regarding joint laxity, I highly suggest kinesio (sp?) taping. It works very well for me on knees and ankles. Strengthening muscle helps, but can only do so much if the “glue” that holds the muscles to bones is wonky.

[kdow]

[QUOTE=Knubbsy;8177032]

Definitely #2. I’ve seen 6 or so PTs in the last decade for lower joint issues. Two I can say were great. 1 was Army trained and because we were already friends from church, could tell me what’s what. The other, I’m seeing now for my ankle, is an athlete with very flexible joints as well. I still shock her with my flexibility but she’s very good at identifying a long list of exercises for different parts.

However, I wouldn’t say that no flexibility training as a blanket statement is a good thing. While my ankles and knees are loose, I compensate in my hips and my flexors are incredibly tight (ditto IT bands). My PTs have been fine with my yoga practice because I pay attention to what parts are involved and I tailor my practice to what’s hurting and my current activity levels.[/QUOTE]

As I said, my PT spent a while working with me because I DID have an area that needed to be stretched. The issue with hyper mobility is that as you point out, the extra stretchy bits compensate and so the bit that needs to stretch never has the stretch transferred to it. So it is possible to do yoga if you are knowledgable and your instructor is knowledgable and has time to take with you to alter poses or suggest alternatives as needed, but many yoga classes, with the rise in popularity, just don’t have instructors who know enough or who have enough time.

I suppose the important takeaway is less about yoga and more - do not do anything that is trying to make your flexible bits more flexible, they do not need the help. If you get can get sorted out with someone GOOD who really understands biomechanics and can spot which bits need a stretch and how to make that happen, then that is a good thing usually. (Obviously, always listen to your personal medical professionals, if they tell you not to do something, etc.)

And as vali said - strength training is usually pretty important, although again you want to pay attention to what you’re doing and potentially get help from an expert like a good physical therapist or similar. The big thing to remember with strength training and hyper mobility is that muscle balance tends to be even more important than it is for other people (and it is important for them too) because with the loose joints, it’s a LOT easier for even small muscle imbalances to pull things out of alignment. (Knees are particularly good for this because there are so many nice big muscles in the thighs, and many people are predisposed to muscle imbalance in the thighs anyway, either due to genetics or lifestyle. Add that to the fact the knee cap is supposed to ride along just so, and is supposed to be held there by soft tissue which is oops, too stretchy and lets the knee cap be pulled away from position by the imbalanced thigh muscles, and oops. Knee pain!)

[Wilhelmina]

[QUOTE=SinMiedo;8206468]
I was about to recommend getting checked for EDS and/or Marfan’s. I don’t know the OP’s body type/height, but EDS was the first thing I thought of when I read this. Marfan’s is another possibility, one with which I’m unfortunately well acquainted, as my mother has it and I’m showing most of the symptoms/have been unofficially diagnosed by my MD.

Regarding joint laxity, I highly suggest kinesio (sp?) taping. It works very well for me on knees and ankles. Strengthening muscle helps, but can only do so much if the “glue” that holds the muscles to bones is wonky.[/QUOTE]

If there is a possibility that you have Marfan’s PLEASE get an echocardiogram ASAP.