Hypermobility / double jointed

[CornishPorsche]

I've always been hypermobile. As a kid, it was obviously a party trick, with lots of sitting on my bum with legs crossed and ankles up on the opposite hips etc.

Now I'm knocking on for 40 and am continually and badly spraining my left ankle. I'm seeing a physio who thinks it's linked to the hypermobility.

Is this my future? Lots of sprains?

Any other adults out there with hypermobile related issues?

You're welcome @howlsMovingBungalow

It's been suggested that in cases of seemingly unconnected issues doctors should think connective tissue disorder because so many of us have had multiple problems and no one has ever joined the dots.

Yes, I have this. Physio with someone who understands hyper mobility is key. Pilates led by well-trained instructors, not just fitness instructors who have done some weekend courses. Aim for a specialist pilates studio that does 121s and always small groups (max 6) organised by ability and problems. Some studios are led by physios and osteopaths who can advise. Light gym work like gentle cycling, some weights, avoid impact sports. Yoga is enjoyable but best to wait until you really understand your body through physio and pilates, so that you know how to protect yourself from overstretching.

Look up pacing to avoid over tiring. Take great care of posture when working, driving, carrying bags etc.

Feel like I've met my home...you all describe so well the probs I have. I'm well fairly fit for 50 but God everything hurts. Mum had the book, bendy finger joints, squint, prolapse, miscarriages, heart murmur, tendonitis, osteoporosis even unexplained allergies which devloped mid life (Mast cell activation?) Final illness was idiopathic pulmonary fibrosis not helped by her crumbling spine. I'm lucky I'm no where near as bad, what I would be interested in is how do you get medical help as a whole. Each time I see a medic they treat the current symptom, but then another pops up ( think molehills you squash one then another appears). What does it feel like not to ache???

@Makinglists - are heart murmurs part of hypermobility syndrome? I've had 6 miscarriages plus my 2 dc, heart murmur picked up after birth of 1st and then prolapse with the 2nd.
I have never thought all my 'issues' could be connected.

Yup! Heart murmur, circulation issues and palpitations. Plus bruise like a peach, nose bleeds, callouses on feet, dental problems all alongside the usual joint and muscle pain.

Yogas is not your friend just because you are good at it. Bitter experience

My list
Double jointed, elbows that bend 'the other way' Shoulders that used to pop out.
Knee pain, Hip pain
IBS - Constipation
Miscarriages
Heart Murmur
Palpitations - really bad if I sleep on left side.
Prolapse - Hysterectomy in 30s
'Corn beef' mottled skin ( circulation? )
Allergies since birth

Wow, I never realised.
Eye-opening for me.
Hyper-mobility, prolapses and arthritis (as already mentioned), but I also have a heart murmur and palpitations.
No-one in the medical profession has ever connected the dots for me before.
Just wondering if the inclination towards eczema or dermatitis goes along with it???

^Yes - and I now have arthritis.
Apparently people with hypermobility enjoy the feeling of stretching joints too far, which can result in excessive wearing of their joints.^

This! I always thought I was shit hot at yoga. Could do things easily without ever trying. Found a yoga instructor who's hyper mobile and understands hyper mobility. All that stretching felt amazing but just knackered my joints. I work on strength training now and don't stretch at all

The stretch marks. ‘Cigarette paper’ scars. Bruises. Heart flutters. Poor temperature regulation. Digestive issues. Depression. Crowded teeth (I only have room for 24). Flat feet.

When I was at school I used to get tired in my core just sitting at my desk. I still struggle to sit without support. I can’t cope with bar stools for example.

Goldenorbspider you’ve described me there with the yoga and strength training!!

Hypermobilty here and I suffered terribly with ankle issues growing up and early 20s.

I started a martial art when I was late 20s which was barefooted; I have to say I noticed I built up so much more stamina and stability in my ankles after that. I used to wear doc martens and firm shoes and that's when I'd have issues with plantar fasciitis etc. In fact looking back I think a couple of years wearing only dms really affected my ankles. I now wear as flexible shoes as possible and don't have any issues. Obviously only flat!

Same happened with my wrists; I'd use a support for training until the muscle built up.

You'll find with a physio that they'll try to move you away from supports so that it's the muscles doing the job of any supportive shoes etc.

I am quite slight and also have hyperthyroidism; I have to be on top of keeping weight and muscle on to support my joints. I over did yoga in pregnancy which affected some joints. I find Pilates boring and actually couldn't do it at all for ages as my proprioception was so bad, once it clicked I think it's magical. It's the main advised treatment for hypermobility.

Hamstrings tend to be the main area to definitely make sure you stretch for bendy people.

Katy bowman is good on some of these things; she wrote a whole book on shoes and posture and also advocates for barefooted walking etc. She has a number of little exercise you can do around the house, I remember a few being foot and ankle related.

Circulation issues, yes. Used to have chilblains a lot and I am dealing with some sort of peripheral neuropathy issues which seem to be triggered by viruses and hormones. Occasional white finger. But I've noticed that exercise is vital for me to feel well. Just finding it hard with a small child at the mo. Bruise at the drop of a hat; I'm taking extra k2 actually at the moment as an bf.

I think my whole family are a little affected but we get off mildly with the arthritis.

We all have to eat early on and not too rich as we all get racing heart rates in the night if we don't!

Regarding circulation, my mum taught me to use alternating cold and warm water to help circulation in my feet and I've become a big fan of using cold water generally as it is also very good for easing and healing injuries. I'm aiming to get back up to being able to sea swim which I have before though building up with many cold showers.

Swimming is great for hypermobility, not least as the cold water is so good all round for circulation and muscles, though breast stroke can make lower back issues worse.

Also, Epsom salt baths are your best friend! Put loads in. (Flotation tanks are pure Epsom salt)

Sorry I have hypothyroidism, auto correct!

Oh hands - really important to keep strength in hands and arms and shoulders.

Pilates is good for shoulder stability but anything that gets you to use your hands is also brilliant. So clay, dough, even a hand grip squeezer.

I work with Sen children and hypermobility is a common issue. We actually have to do a lot of these things with them to build up stamina.

These were great articles that mners gave me on the issue, so posting here:

https://www.dynainc.org/docs/hypermobility.pdf

http://www.londonhandtherapy.co.uk/wp-content/uploads/2010/04/Ch09-143-162-9780702030055.pdf

http://www.londonhandtherapy.co.uk/wp-content/uploads/2010/04/Ch12-207-216-9780702030055.pdf

And an extra one I found for children

http://hypermobility.org/wp-content/uploads/2017/06/HMSA-2017JSS_SLIDES.pdf

I am mid fifties and have it but never realised until I broke my wrist a few years ago. The physio was amazed at how flexible my wrist still was after the fracture. It explains so many things - I perpetually turned my ankles when I was younger and have had 3 broken ankles.

Now I have arthritis in my knees and a hip impingement (all that W sitting?), plantar fasciitis, Achilles tendinitis and a frozen shoulder ( the second one). I swim a lot and do some weights - I’m too unco-ordinated for Pilates classes but would like to find a one to one teacher.

I've read that diastasis recti (the 'mum' pooch that won't shift ever!) is also related to hypermobility. Makes sense if a slightly depressing outlook for those with both.

I was diagnosed with joint hupermobility syndrome 16 years ago. The diagnosis has changed to Ed's III (benign) basically just being very hypermobile.
As pp said you need to find a really good pilates studio (not a class in a gym) who can specialise in strengthening the individual joints. There are very specific things for ankle building.
I'm a terrible dislcator;
Both shoulders fully dislocate all the time. It didnt previously hurt but the nerves are becoming more annoyed so its worsening now. my SI joint (rear pelvis jointly comes fully apart -really hurts
Hips come out
knees, fingers and toes indicate ankles twist and I have horrible stretchy skin.
Pilates is the best thing as it supports each joint individually and acts as an internal support for the body. I strongly recommend you find a studio that works with 3 or 4 at a time on equipment if possible. Mine is worsening but pilates in slowing that down. The only way to control it is with specific strengthening exercise. Pilates is better than any physio I've tried. It would be my recommendation. Good luck

I’m also hyper mobile, diagnosed at 18 after subluxing my hip joint. Hips, knees, ankles, toes, shoulders, elbows, wrists all bendy and subject to injury. The main thing that helped me was weight training, but starting very slowly and gently with great attention to good posture and form. It’s genuinely been life changing. Still often have pain but not like it used to be and I rarely sprain my ankles now.

Oh yes, I found Pilates much better and easier when I moved into equipment.

Definitely echo the strength training.

One of the links below though did point out that building strength in hypermobile people is harder and can take longer. Doesn't mean we shouldn't though!

I was lucky enough to be diagnosed by one of the leading experts in this. He advised me that physio/exercise should include not only strengthening muscles but also maintaing flexibility. This is something that I've found lots of medical professionals overlook. I've got multi joint arthritis and for me, my joints are very stiff. However, compared to a "normal" person I'm still hypermobile. I still score 9/9 on the Brighton scale for example, so for most drs, physics etc who examine me they don't see any problem because my joints aren't as stiff as someone else's. My scans and X rays tell a different story however, when they actually see the state of my joints.

We really need specialist input from clinicians who understand the condition. Given the latest statement from rheumatology association this week though, I think we are going to struggle all the more

What did the rheumatology association say @hearhoovesthinkzebras ?

www.hypermobility.org/News/response-to-bsr-statement

British Society for Rheumatology statement 04.03.2020

We are aware of the BSR statement released today. We understand the reasoning behind some of their concerns as the science and evidence behind hypermobility syndromes is still evolving, and there is confusion around the various diagnostic terms. This is why the HMSA has developed the Kent Model which is a set of educational tools to spread best practice based on our current level of understanding of hypermobility in all its forms.

The HMSA will continue its work to ensure that whatever diagnostic term is used, the hypermobile individual can access appropriate information and support to manage their hypermobility and any associated health problems.

We will also continue educating health care professionals, working with people on the BSR’s hypermobility special interest group, and consulting on guidelines (such as those produced by NICE).

(The HMSA’s Board of Trustees)

Published: 4th March, 2020

What are people using for footwear? I've got some dr martens that I've been wearing to death. The heels worn on to the outside. I've got plantar fasciitis and find myself walking on the outside off my feet to try and compensate