Just been diagnosed hyper mobile - what next ??

[cleo333]

Hi have you been diagnosed hyper mobile ? I have by a private physio ( explains so much , lots of pain for years in lower back and knees) . What do I do next ? Should I see the gp? Do I need a referral elsewhere ? Thry physio suggested some exercises but to be honest it wasn’t clear at all

I’m verging on hypermobile. Yoga helps. I go to a weekly class.

I’m hyper mobile - I score 9/9 on the Beighton scale.

I can’t say it affects me. I’ve dislocated my kneecaps a couple of times, but I have found keeping my thighs strong (weight training, running, spinning, yoga) massively helps with this and I haven’t dislocated them for years now.

I stand with an exaggerated arch, so prolonged periods of standing kill my back - so I just avoid doing so.

I have been diagnosed with EDS. Which is a bit more than hypermobility so I suppose it depends if you suspect you have EDS. Even then to be honest you won’t get any help from the nhs for it. I was discharged with a leaflet. But I think it’s good to have on my medical records in case I have surgery, etc.

Dd also has eds and when she had a massive blood clot they were going to discharge her the same day until they realised she had EDS and then they got a bit more excited

if it’s just hypermobility though your gp probably won’t care at all and will just tell you x percentage of the population are hypermobile. Weight lifting and strength work to protect your muscles is important.

I was diagnosed hyper mobile in my early 20s. Only time it's ever really needed attention was in pregnancy in case I needed an epidural- can't remember the specifics, it was best part of 20 years ago. But I did have an epidural and it was fine. Actually having DC improved my back problems because ligaments softened and whatnot which somehow helped. I get back pain from standing too long the same as a PP but mainly I just do life as usual like everyone else. And occasionally show off my weird bendiness as a party trick 😂

Generally a GP won't be very interested or refer you anywhere. They will consider it more as a body variant rather than a medical issue if that makes sense.

You need to keep fit and strong as pp said. Strengthening the muscles to support the joints is my lifesaver. And manage it yourself. No one except specialists have a clue or are interested in

I echo others nothing …. It’s just an awareness now … and now everything will start to make sense in your life..,, well it did for me the clumsiness the bruises , the feet problems and knee problems now I can at least go ahhh am it’s hypermobility not I’m a clumsy dill which is what I thought for 30 plus years!

Did the physio say what the hypermobility is from? EDS or something else?

A work colleague has it but I'm unsure if from EDS or not. She had multiple adjustments at work, cut her hours and does physio etc Our job was originally about 50% on your feet, then she moved to office work but even that was too much for her so she had to quit in her 40's. I don't know if she is an extreme case, but she hasn't worked since.

I’m hyper mobile. I just keep fit and strong (Pilates, weights, walking etc).

There can be a link with osteoporosis- get a dxa scan to check your bone density

I’m hypermobile. Yoga is a complete no-no for me but Pilates is fine. Swimming is ok but only if use current form (that head out of the water breast stroke is to be avoided at all costs). I’m heading towards my late 50’s and I’ve found the absolute worst thing is inactivity. It’s vital that i keep fit and strong and I’ve started weight training in the last year or so to protect my joints. My youngest is VERY hypermobile and I’ve stressed to him that he must stay strong to keep his joints protected and to try to prevent dislocation.

Hypermobility over here 8/9 on the beighton scale. Diagnosed at 16 and now 33 so lots of experience.

There’s no point going to your GP, they won’t be able to do anything. It is largely a condition you have to live with and manage.

Regular exercise, strengthening exercises are the best way I keep mine at bay and stop my shoulders from dislocating. You have to build it into your routine.

See a private physio to get some exercise recommendations if you aren’t sure where to start and just exercise caution in over stretching yourself - just because you can do it, doesn’t mean you SHOULD do it - that’s how my husband detached a bicep (also hyper mobile but only diagnosed after that injury, neither of us had really paid attention to how flexible he is because I am quite extreme so it didn’t seem like anything by comparison)

This sounds more like EDS - my friend with this uses a stick sometimes and she is only my age. Lots of other EDS symptoms though not just hypermobility

Agree with the pilates suggestion. You need to concentrate on increasing your core strength. Ballet tendu exercises will help to increase the strength in your ankles and you could also try floor barre exercises for beginners, there are clips on youtube. They are specifically designed to strengthen your core, back & legs. You need strong muscles to support the joints - most ballet dancers are hypermobile and really have to work at it.

Please don’t do yoga unless you have a specialist instructor. Pilates better but a vaguely clued up instructor is also important so they can stop you hyperextending. Strength especially core strength really important.

if you could afford a few sessions with a specialist physio to get you on the right track that would be great

My son has classic EDS and the specialist has said the fitter and stronger he is now, the more it will help as he gets older. If he gets bad cuts he needs to have double stitching and they will need to be careful of bleeding if he ever needs an operation.

Ideally a specialist dance physio would be the best, but they are very few and far between, They understand hypermobility. A fair few pilates instructors are former professional dancers themselves, so finding one of them would be good.

I'm just jumping in as my 12 year old daughter has just been diagnosed and started Physio 3 months ago. She scored 7/9 on the scale they used to test it. It explains her constant neck pain and completely random injuries, and the way her arms bend almost backwards when swimming. I'm sorry as we aren't much help as we don't know much. The GP referred her for physio after suspecting she was hyper mobile. We have Bupa so they approved the physio sessions under our cover. The physio then confirmed and we see her every 4 weeks or so with new exercises to be done daily that progress each time. They are focussing on core stability and strength. She has to be careful as she does a lot of dancing and gymnastics.

I'm hyper mobile (and have known since childhood). I only have problems if I am generally unfit though it took me a while to work that out.

In my experience there's no point telling the gp or a physio (unless you have an injury)

The best thing to do is to strengthen your muscles to compensate for the additional flexibility in your connective tissue. If you want to do weights/yoga/sport regularly then getting your posture/technique right is really important to avoid injuries.

You should also be aware of random little things that go with hyper mobility (like local anaesthetics not working the same way or as effectively which for me impacts dentistry).

I have it too, diagnosed at 18 after a very dramatic subluxation of my hip at school! GP was useless but maybe things have improved now, doesn't sound like it from other posters. What helped me: careful strength training. My joints hardly ever go out now. Yoga is something I approach with care. Running is out for me but walking and hiking are fine. Good luck and listen to your body!

Lots info here
The HMSA | The Hypermobility Syndromes Association https://share.google/zWx8cVXtBIBkuLVxR