Adults with joint hyper mobility syndrome

[chunkyrun]

Anyone else? Very recently diagnosed. Makes a lot of sense. Had a zoom meeting with a physio. Encouraged to take up Pilates with a lot of core focus. Struggling as I find Pilates really boring 😑 much prefer weights, running hula hooping ext but they're not necessarily the best exercise for me.

I have it too, diagnosed in my twenties and I'm in my early forties now. I ran for a few years and my right knee is almost constantly painful, likely signs of excessive wear as much I've aged. I was warned that high impact sports will catch up with me one day and that's starting to come true I think :/

It's not a nice condition to have, do you have any particular joints that are troublesome? I do experience subluxing at times but have never dislocated anything (yet!)

I have hyper mobile ehlers danlos syndrome. Was diagnosed about 10 years ago and I do find that the dislocations can be very disruptive to day to day life.

Me too! Just diagnosed with H-EDS and I’ll be 48 next week. All my life I thought I was just a klutz. (Meanwhile, have had much more than my fair share of orthopaedic surgeries!) Have had two hand surgeries in six months. Soooo over it. I find I have the clicky, painful, sublux kind of problem.

Oh, and recurring ganglions that seem determined to divorce my thumb from my hand. (Hence the surgery)

I have it too. I have found regular exercise really helps, especially weights. The stronger I am the more stable my joints are.
But I am very prone to injury and have to take special care not to overwork myself. I really have to listen to my body, I've had to work slowly to build up to the level I am now.

I could never get on with pilates either but have a real love for yoga. I do a mix of yoga, hiit and weights.

Unfortunately I don't think I'll ever be able to run, and mustn't swim breast stroke but can do most other things. It doesn't stop me but it's taken a while to understand how it affects me.

I have it. I can’t run, it just destroys me. I used to hate Pilates and then I saw the impact it had on my well being and now I am evangelical about it. Swimming is good, as is skating (retro!), walking, and I like dancing too. Cycling should be good but I have some misalignments in my legs which make it painful.

I had some amazing physio in London when I was first diagnosed. They had a hypermobility clinic I think it was at UCL. It really helped. I felt like they really understood my condition.

Lately there seems to be a lot more information and understanding out there about it. I find allied health understand it better than GP’s do. (I am in Australia, so maybe it’s different here.) I have always had problems with my joints - I had braces and calipers until I was eight and a half years old. I have recently had xrays done and only just found out what a mess my leg and hips are actually in. My GP and Physio were gobsmacked that I am mobile at all and hadn’t signed up for a hip replacement by the time I turned 20, and yet I appear to walk almost normally. They were talking about how people who live with chronic pain for long periods, especially those who are born with it, seem to smudge it out in their brain so that they can live with it. (Meanwhile, give me a papercut and I’m a massive drama queen!)

I have H-EDS. Finally diagnosed in my forties but have had recurrent dislocations and big surgeries for it since I was 9. Seemingly doctors just didn't know what it was and I was "just bendy".

The lack of management and taken its toll however and I now have osteoarthritis in all of my joints and need some joint replacements.

I've also recently been diagnosed with dysautonomia and I have orthostatic intolerance and reactive hypoglycemia. Again, all linked to H-EDS.

I am lucky that the hospital where I'm treated for inflammatory arthritis is also a specialist centre for hypermobility and they have a programme for it which includes Pilates, gym sessions and hydrotherapy. We were encouraged to pick and mix and then to continue doing what we enjoyed. Going to the gym was encouraged. Using weights was also encouraged but focus was very much on form and using joints correctly. So, try and face a mirror so that you can visually check joint placement as proprioception is affected by hypermobility. We were also encouraged to not move to the end of our range whilst in the gym and to use machines rather than free weights because machines tend to help you use joints correctly.

In Pilates it was again encouraged that we looked at ourselves so that we could see how our joints were moving, where they were placed and not move to end of range.

I love Pilates now but do still have to be able to see myself in a mirror. When I do physio I have to do it in front of a mirror too. I also do yoga which isn't the best for us bendies but I enjoy it and it helps the pain. The drs are quite relaxed about it though. It's not a definite no no.

Have a look at the HMSA website. That's really helpful and also the ehlers danlos association site. Jennie de Bonne on YouTube also has some really good exercise videos.

Thank you some great advice here! In my early 30s. It was a yoga instructor that pointed it out to me. I thought I was shit hot at yoga being able to go into all sorts of bendy positions. She's hyper mobile herself so could easily spot it. I'm staying away from yoga now as I just love stretching but that's the last thing I need. Does anyone suffer with stiff hands? Rest of me, knees and hamstrings especially are very bendy. Then I have hands that don't want to work and ache at night.

Does anyone suffer with stiff hands?

I.do but I also have inflammatory arthritis so it's difficult to work out what is causing what.

I have hand therapy at the hospital and in their opinion some of it is due to arthritis and some due to EDS - part is due to using muscles and ligaments in the "wrong" way so structures that were designed to do certain things aren't working because others have taken over but they weren't designed to do it and so fatigue or get injured.

It's so complex when you read up about it. Your back for example has muscles that are designed for stamina so can be engaged for long periods of time to.hold you upright but then others are designed to work in very short bursts. If you don't engage the right muscles and rely on the short burst muscles to maintain your posture they fatigue quickly and get injured.

You aren't necessarily hypermobile in all joints either so some can be hypermobile while some are "normal" or stiff. Have you been diagnosed by a rheumatologist? The criteria for JHS and H-EDS is very specific. Have a look on line.

OP, look for a Pilates class in a community hall rather than a leisure centre...... when they all restart again. You need a small class with an instructor who understands.

My class would be ideal for you: My Pilates instructor has EDS and took up PIlates as a way to improve her symptoms.

I did have to take a break from yoga for a bit but I'm fine to do it now.
I stick to strong dynamic flows, rather than the more stretchy kind. I have to be careful not to hyperextend or hang in my hips too much but it's definitely still possible to do it and enjoy it.
It does take a while to get your head around but you don't need to give up everything.

Diagnosed via zoom with a rheumatologist, it was a physiotherapist I was referred to that urged me to work on my core with Pilates. Got another zoom appointment weds for someone who specialises with hands. Does anyone else have flat feet? That was mentioned as a common ailment. I find the temptation so hard not to stretch! That's all yogas been to me but I know it's meant to be more than stretching. Just feels really nice but causes more damage then good. So find it easier to just avoid

I have flat feet when standing because the arches collapse but I have high arches with foot drop when non weight bearing. Caused by hypermobility apparently so podiatry have made me insoles.

You absolutely can stretch. I saw Dr Hakim, who diagnosed me initially, and is one of the country's experts. He told me that stretching and maintaining my full natural range of movement is important but try not to hyperextend my joints or to hang off them. If feels totally un natural and I do have to really watch myself in the mirror but his view was that as we naturally stiffen with age that it will increase pain, as it does with "normal" people. As they age they get stiff and that causes pain so they would be encouraged to keep joints mobile and so should we.

I definitely find yoga helps me I just try very hard not to push into hyperextension but I still benefit from stretching muscles and hamstrings and calves etc. In fact, I've got very tight calves and Achilles because of the dynamics of my feet - they are very hypermobile and I can't hold them up at all which means I now have tight calves so part of my physio is to stretch those.

Be careful with physios; they don't all know as much as they should about hypermobility and can sometimes recommend exercises that are harmful.

Can I ask, what mattress does everyone have? Plan on buying a new one ASAP. Mines absolutely killing me. It sags and my lower back ends up sinking. Thinking of going extra firm. Just wanted to know what others were using as sleeping aids? I find it's nighttime when my joint pain really kicks in and then in the morning after sleeping on my mattress.

Flat feet is really common, stretching is fine, you just have to ensue you don't over extend, and that took me years to work out what 'normal' was. Also healing seems to take longer, and easy to not heal properly. I also had to tell the midwifes I shouldn't use stirrups due to risk of dislocating my hips giving birth as they had no idea. I stick to swimming and cycling.

We have a firm mattress with a memory foam topper, I can notice when we need a new one very quickly.

I am starting Pilates on Wednesday. I was told not to touch yoga with a barge pole until I am much more in control of my movements and aware of my limitations. (Makes sense.) As I am doing my level best to avoid gruesome orthopaedic surgery for my leg deformity result of badly set femur during premature birth in 1972 (they had no idea what they were doing then!) and the charmingly names Miserable Malalignment Syndrome, so Pilates is the logical choice.
I also have a toe trying to rotate upside down when I am standing and walking - WHY?!?!
Old age is looking fun... not.

@chunkyrun

Can I ask, what mattress does everyone have? Plan on buying a new one ASAP. Mines absolutely killing me. It sags and my lower back ends up sinking. Thinking of going extra firm. Just wanted to know what others were using as sleeping aids? I find it's nighttime when my joint pain really kicks in and then in the morning after sleeping on my mattress.

I have a firm mattress but have to have a memory foam mattress topper too.

I have quite a soft mattress but I'm a side sleeper. I have to sleep with a pillow between my legs, I have all sorts of pain if I don't!

I have flat feet too, and foot drop. I have a really firm matress which helps - anything too soft and my hips are in agony.
This changeable weather we’ve been having is making things worse for me. I miss the gym too - normally I swim and lift weights but I haven’t done for ages now and I’m feeling it.
I know what you mean about yoga. I’m shit hot at it too, but that isn’t a good thing!

I have it.

I can't say it affects me much. I do yoga and love stretching. I also run and weight train and (in normal times) do 3 spinning classes a week.

I have dislocated my knee twice, which strangely, didn't hurt but was very swollen afterwards. I have to be careful when skiing.

My thumb dislocated while I was practicing CPR on a dummy. I had no idea until someone else pointed it out. (This is what kicked off two surgeries and led to my diagnosis.)