Please talk to me about Hypermobility and Hypermobility Syndrome

[BearFrills]

When I was born I had a clicky hip and spent several months in plaster after an operation to repair it. I also had flat feet and had physio as a child to correct them (they used to put my feet in a dish of warm water with foil pads in it then run a mild charge through the pads to make my arches contract!).

When I was in my teens I had my final hospital follow-up for this and the consultant I saw was amazed at my range of movement, 'go and fetch the students' amazed. He said I was hypermobile but this wasn't logged anywhere or followed up so I just accepted it as normal.

I've seen physiotherapists here and there over the years since then for various things and each one always asks "did you know you're hypermobile?" (or words to that effect).

In October last year I had a patella dislocation (that's a dislocated kneecap to you and I) - the eighth time I've had this sort of dislocation. The hospital was supposed to refer me for physiotherapy but for whatever reason didn't complete the paperwork. I've chased it up with my GP and will apparently get an appointment soon.

My previous dislocations hurt (my god, does it hurt when it happens!) but after a week or so I was fine. This time around I was in a brace and on crutches for two days with the hospital telling me not to put any weight on it, then had to wear a support bandage for over a fortnight as the joint felt really painful and unstable. It feels more stable now but still aches towards the end of the day and if I wear anything other than trainers it feels wobbly - I wore a tiny heel last week and felt sick as I thought it was going to pop out of joint.

Does anyone have any experience with Hypermobility and Hypermobility syndrome? Reading up on syndrome I have several of the indicators for it. At what point does Hypermobility become Syndrome? Is there anything I should be doing or anyone specific I should be seeing other than the physiotherapist?

Thanks in advance.

I can't answer all your questions, but I recommend you make sure you get some proper follow up with that physio who will be able to answer them for you.

For most people with hyper mobility there's rarely any problems. Nearly every person who says they're double jointed has a level of hyper mobility. For some people it causes minor problems such as joint pain or more major problems such as joint dislocation. Strengthening the muscles tends to help. For most people it is never an issue, most gymnasts are hyper mobile for example but they have a high muscle mass that strengthens their joints. Maybe after a physio assessment and getting some advice it might me worth working on slowly strengthening your troublesome joints through swimming or maybe going to a gym and getting a routine that focuses on the troublesome areas. But before you do this please talk it though with a qualified physio who can assess your needs and advise appropriately.

I was diagnosed as hypermobile by physio after having my first baby. I found this hypermobile website link helpful.

For me, pregnancy and giving birth has made it worse but I can live with it, never had any dislocations but had a lot of growing pains (specially round my knees) in my teens. I've always been 'bendy' as my friends would say, but I always thought it was normal too. It may be worth chatting with your parents or siblings if they have any of the signs too as it is almost always passed along in the genes.

My mum is bendy but not to the degree I am, however DD is 18mo and is hypermobile. She was breech and had various investigations on her hips at birth then when she started walking as she was walking strangely and the consultant said she was incredibly flexible, she can literally fold herself in half so that the soles of her feet are flat on her back, she also has a mild twist in her left femur which may need breaking and resetting at some point. DS has never been diagnosed or checked in that way but when playing with him I can see his range of movement is similar to my own so I suspect he might be too.

Thanks for the responses :) I'll have a look at that website.

Whilst you're at it, have a look at Ehlers Danlos Type III (benign, hypermobility type).
I was diagnosed with EDS during pregnancy, it has a lot of other ramifications other than bendiness and subluxed/dislocated joints. Have a read and PM me if you need to.

I was diagnosed as having hypermobility syndrome at the age of 13 after being referred to the hospital. It began with all of my joints clicking, you could literally hear me coming! This didn't bother me, even though it went through my mum. However as puberty hit I had bad pains in pretty much all of my joints and some would lock some days and others dislocate. Apparently it's classed as the syndrome when you begin to feel a lot of pain - some people can be hypermobile and clicky and not feel any discomfort. The increased movement in your joints also put extra strain on your muscles, so if you have weak muscles like me they give you a lot of pain too, however you have to be extremely careful when exercising to build your muscles in case you cause further damage.
I had my dd1 6 weeks ago (im mow 22) and I felt no pain from my hms through my pregnancy and very reduced pain now post birth. Apparently the hormones during pregnancy can help sometimes!
in terms of should you be seeing anyone I only got referred to physiotherapists who would recommend exercises and alternative ways to cope with daily routines, along with some painkillers. Feel free to message me about anything if you want to! :)

OP, that all sounds so painful I have very mild hypermobility, it mostly affects my knees, although pregnancy has worsened it in my back and hips too, and I've recently started having problems with wrists and elbows too. It's mostly joint/muscle pain from overstretching in my case, but it is tiring and a bit limiting.

I went to my gp when my knees were really painful (was having trouble walking up/down stairs - very clicky/popping and stabbing pains when bending, walking for more than a few minutes, kneeling to change nappies etc etc) She referred me to a NHS phsyio who did some great work on strengthening my legs through physio. He also referred me to a podiatrist as I had flat feet (he said cause by the weak leg/knee muscles) and they made me some prescription insoles to wear which again have really helped. I've never experienced dislocation (although came v close yesterday, elbow "popped" out, couldn't straighten it for a while though I think because I was only crying with pain and not screaming it probably wasn't dislocated ) but it does sound horrible for you, I really hope they can do something to help.

Definitely chase up the physio, it should make some difference, and good luck!

Thanks everyone :)

Yes, the dislocations are painful. My most recent one I was carrying DD when it happened, I'd just come down the stairs when my knee went from under me, I managed to shove her onto the sofa as I fell and then lay on the floor screaming which terrified DS. For weeks afterward I kept thinking over and over what would have happened if it had dislocated just a few seconds earlier, I'd have been at the very top of the stairs holding the baby (not that she's much of a baby any more at 18mo!). It still makes me afraid to carry her on the stairs but she can't climb down them herself, she's too small to bridge the treads, so I usually end up bumping down on my bum with her on my knee :o

The hospital seem to have realised they've made an error in forgetting to refer me, I'm not sure how they've forgotten but the original report to my GP in October says blah blah blah, have referred Mrs Frills for physio and the letter they've sent in response to my GP chasing it up says blah blah blah we don't know why the referral wasn't completed when we said that it had been. Hopefully this means I won't wait too long.

I have EDS hypermobility type as does DH.

Our 4 dcs all have it too, they are quite severely affected (drs think because its from both dh+I) and they suffer a lot of dislocations.

Stanmore hosp offer rehab stays for adults and GOSH for children that are helpful.

With going down stairs, can you teach your DD to crawl down them backwards, the same sort of style as they use going up - with her tummy against the stairs and they sort of push themselves down with their arms IFSWIM. My DS will do this but he also has a mind of his own and some days will refuse but it could be worth a try.