Hypermobility help

MARKZ123

For years ive always had back problems, always tired,always felt cold legs feet and hands.keep spraining my ankle. The dr always gave me the opinoin i was imagining it so never pestered them. Once you have a problem with your back youll always have problem he said...
Ive also had problems with my foot that the podiatrist couldnt sort out so i was refered to a biomechanic (not a mechanic for cars running on veggie oil) he had a look over my foot and got quite excited, he checked other joints and said you have hypermobilty.. Oh well i thought.
Got home looked it up on the internet and fould all the problems ive had over the years tie in with hypermobilty. Im relieved im not imagineing it. So tommorow im going back to the dr's to tell him im not mad.
The biomechanic has also refered me for physio for core strenghtening.
What else can be done for it.
He scored me on the brieton scale
is there any over tests available...

Mupette

http://www.hypermobility.org/beighton.php

found this.. any good for you?

I'm a hyper mobility person too, apparently i have had it all my life, never really noticed it, apart from being extra bendy. The Rheumatoid Arthritis consultant told me.

I am grateful that it is at the present time not a major problem for me

Invasion

Hypermobility syndrome is different from being hypermobile/having hypermobile joints. I have hypermobile ankles, knees and elbows, but I do not have hypermobility syndrome. I just thought I'd mention this as it's a common misconception.

littlerat

I've been diagnosed with hypermobility in my back, knees, ankles and I think elbows, my back though was what was causing me problems. I'm not 100% if it's hypermobility syndrome or just hypermobile joints, but think it's the former.

Basically I had physio with exercises to help get everything moving more how it should, also to improve my posture as apparently many people end up adopting a poor posture with it, had to concentrate on not over stretching my knees when walking etc. Had about 6 sessions but the "homework" is ongoing.

The bad news is, I gather there's very little else they can actually do - the good news is it's been months since I properly hurt either knee, hurting my ankles less and the back pain was reduced by about 80%, was managing it without any painkillers or anything.

One tip though, apparently it makes you more suscepible to whiplash in even minor car accidents, which hurts like hell, so try to keep an eye on if people behind you are going to stop!

johnwayne

My son's physiotherapist has told us that he needs to build up his muscles to help with his hypermobility. He has major problems with his legs giving out & also with dislocations.

I on the other hand have Hypermobility Syndrome which is very painfull. My knee and hip give out regularly. My shoulder also subluxes (partial dislocation) several times a day.

If you can get the right exercises to strengthen your muscles this could help you loads. Many of the Hypermobility organisations do not recommend yoga as it stretches you. Pilates is meant to be good

I am like yourself in the fact that it has taken years for the doctors to take any notice of my symptoms & it took a new gp to finally take note.

Jojo_the_Tightfisted

And if you have recurrent ankle sprains, pester for an immobilising boot/surgical appliances referral (especially if your foot feels like it's hanging off or just stops holding you up without warning). My one is really intended for post achilles surgery, but the ankle and leg is so swollen and loose that the standard braces and boots weren't going to fit.

My one looks monstrous (all velcro and padding), but I put it on, pump the airbags (for want of a better word) up and get on with my day. You have to walk rather like you've just stepped out of your snow board bindings or you're an ice hockey player, and it is inconvenient, but -


48 hours and the relief from crunching, clicking, slipping, painful, swollen, well, to be accurate - ballooned - ankle problems is incredible. Just from having the foot kept at 90 degrees and compression applied from the airbags. It's not an instant fix, but the pain is significantly reduced, which helps for both the waiting period and the actual course of physiotherapy.

They're going to have to fight me to get this boot back!

shays_mum

Markz123 sorry to hear your troubles, all i can is we feel your pain!!, have you tried the hypermobility website, really useful stuff there. I am still to have my bio-mechanical check & physio check so wish me luck. Btw if anyone knows of any decent nhs HMS physio's in London pls pls pls pm i am in agony , thanks in advance x

serenity79

MARKZ123, sorry to hear about that! I have Ehlers Danlos Syndrome Hypermobility type, I've finally been diagnosed at aged 30 after knowing pretty much all my life something was going on but was always either completely dismissed or it was wrongly attributed to the ME which I also have.

Beighton score is now just one aspect for testing for HMS (hypermobility syndrome), it's part of the Brighton Criteria, of which there are two major criteria and several minor criteria. You can pass for HMS on variations of these.

Many people are just hypermobile (bendy but no issues with pain) but then when people are hypermobile with issues, pain or something else, then it's a hypermobility syndrome (hope that makes sense)

Just wanted to let you know that the hypermobility.org link that Mupette posted earlier also has a fantastic forum for all hypermobility syndromes (HMS, EDS Hypermobility, Marfans etc) you should give it a go, I have found it invaluable in my search for information.

Best of luck.

Trialia

I also have hypermobility-type Ehlers-Danlos syndrome, which is pretty much the same thing as hypermobility syndrome according to some of the medical experts. I was diagnosed at age 22 after having had years of problems including repeated subluxations and dislocations, chronic pain from unknowing joint hyperflexion, and a shoulder stabilisation procedure (one would have thought I should have actually been diagnosed before trying that, but oh well!).

I am told that there isn't a whole lot that can be done to prevent the major joints (shoulders and hips, specifically) subluxating or dislocating. Also, ME and/or fibromyalgia (they're very similar conditions) can develop secondary to hypermobility syndrome (I have FM).

serenity79

Trialia, I've been told now that I have fibromyalgia as well. I didn't quite believe it until the Professor who diagnosed the EDS pressed my tender points and I screamed in his face

Unfortunately my hips seem to be my worst joints, although I don't think I've ever fully dislocated I am constantly subluxing them and I am always in pain with them. I've subluxed or dislocated most of my other joints, am recovering from a dislocated left shoulder at the minute. Most of the time pretty much everything hurts, and pain medication just about takes the edge off and that's it.

I actually found out about and did the research into EDS myself and brought it to my GP, saying 'I think I have this' and asked to be referred to a specialist, but ended up going privately to London to see one as there was issues getting from Northern Ireland on the NHS. Best money I ever spent though.

MARKZ123, did you get to see your Doctor yet?

SingleSue

Mark - my eldest son has already been diagnosed with hypermobility syndrome and they are looking at EDS and Marfans too. He has frequent subluxation of his shoulders, wrists, knees and hips and suffers a fair bit of pain.

I can also vouch for the site mentioned, they have been a tower of support for me, especially when I was a quivering wreck when Marfans was first mentioned.

I am/was very bendy also, in some areas, more bendy than my eldest son and from a very early age, have had to have physio (first physio was at age 12 on my back). I've have always put myself in the hypermobility group rather than the HMS group but on thinking back and looking at the criteria, I probably would fit the HMS tag.

I developed arthritis in my fingers by the time I was 19 (my fingers party trick used to make people feel sick!) and was finally diagnosed with arthritis in my lower spine at age 30 after very many years of being told I was too young for it (doc said he would only xray at age 30, so had to wait until then!)

At almost age 40, I now have further arthritis in my knees, feet, ankles, wrists, neck plus a very unstable right wrist and an incredibly clicky back (another trick which turns the stomach) and a beggered shoulder and I have to be careful I don't overdo things as it can lead me to walking like an old woman and completely without energy.

My youngest son has diagnosed HMS, whilst my middle son has hypermobility in some joints (mainly fingers).