Joint Hypermobility

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Does anyone suffer with this or have knowledge of it?

I was diagnosed early 20s, i'm 30 now. I've been lucky enough to have only ever torn a tendon and some cartilage.

The worst of my pain is in my back and pelvis - I have had a lot of physiotherapy for it in the past which has always been strength training so the extra muscle can protect the lax joints.

It definitely helps but nothing is helping my back, right where my bra strap sits it burns and i seem to have a lump there now. Doctors see i have the condition and tell me to take anti-inflammatory meds if i'm in pain and thats that.

Is there anything else i can/should be doing? The older i get the more things pull - i re-arranged the rug yesterday and twisted wrong and end up limping for the day (at 30!)

Do i need to really take this strength training to the next level to prevent future disability or is too much weight a risk?

Ive put all this to the previous physios and doctors and they all say the same thing "follow your physio plan" but i dont feel its enough and feel im going down hill still!

Also - can it cause a huge amount of fatigue even when im office based most of the day? Had blood tests done and all ok but 10 hours of sleep and i'm falling asleep by mid day again having done nothing!

Sorry i know its not an overly well known condition but hoping i catch anyone out there who could help.

@BananasAreGood Ahh i thought yoga or pilates but isnt that about stretching?

Spray on painkiller!! I didnt think that would get deep enough to hit the spots - would it work on my back do you think?

Thank for the advice

Haha just had visions of me spraying the painkiller down my pants in the shopping mall to treat my pelvis

I have it, no suggestions except to maybe look at the HMSA (hypermobility syndrome association), they have a LOT of useful info!

Thank for the site @SecretLifeOfSam i'll check it out! Never heard of it before.

@BananasAreGood I am going to get onto the yoga thing - as far as steroid injections go, the doctor just says the same thing "anti-inflammatorys" but i cant live on them, they dont always work and they dont last very long.

I wont lie i'm a bit wet when it comes to asking for things, can i go in and just request this? I always feel i'm telling the doctor how to do his job if i question his answers. I need to grow a pair!

My wrists and shoulders also pop out (no pain) when carrying shopping etc and i have to put the bags down so they pop back in. Its just little annoying things like that and being unable to stand for long.

Have you been tested for ethos danlos syndrome?

Diagnosed as a child myself.

I have always been told yoga is to be avoided and is not good as it encourages stretching and you want to stabilise joints rather than make them more prone to moving out of place.

Pilates is much recommend but only "proper" pilates with fully qualified instructors not just a crappy gym class. There is a huge difference. I used to have an instructor who worked with a physio and was amazing. He helped my back hugely.

Strengthening your muscles will support your joints and so this is encouraged unless you condition is so severe that exercise is too dangerous. Concentrate on form in whatever exercise you do. Doing movements correctly is more important and much safer than going for amount.

Also steer clear of crossfit!

Apologies for hijacking- is this the same as what always used to be called double jointed. Interested because both my D.C are. My husband and I are both very flexible and have produced children whose hand bones move in weird weird ways without pain. I had no idea this was a potential future health issue.

@Twitchingdog i've read about it and it matches - lets just say at 30 im definitely overstretched on the skin front! - but again no docs or physios have mentioned it or tested. I have 9 points on the Beighton Score so it may be possible. Funny you say that i saw a girl on this morning who had it and i thought "well shes in a wheelchair bless her so i deff dont have that"

But if i do have it, is there anything that can he done. Just seems the treatment for these is pain management and strength.

@BeepBeepMOVE thank you for the advice - luckily i dont think i am in the dangerous category, i also seem to protect my joints out if habit now - dont flex my knees etc. I di do strength, but im having to limit that now. For example i used to do a lot of lunges but now this pelvis thing playing up i just cant do them.

@Goosegettingfat my little boy is 5 and he is clumsy and bendy and floppy around his joints so i have a feeling he may have it. Doc said its too early to tell if its just muscle tone/the fact hes very tall for his age yet etc. I dont think it always causes future problems, sorry im not the best person to ask, i think in some people it progresses and others it doesnt. Some can also be 'double jointed' or have lax joints but not have hypermobility.

There are different levels. Joint hypermobility, hms right up to full ehlers-danlos.

My dd has hms which I'm still learning about myself. Not just joints but growth and mobility issues, sight and hearing, frequent headaches and stomach aches, what was thought to be asthma they now think is a lax diaphragm issue, palpitations, mucous membrane frequent infections, exhausted and in pain most days.

We get very frustrated at people thinking its 'just' double jointed/funny bones.

As a female she's also more prone to breast tissue problems and spd when pregnant. Also already been advised to aim to not be an older mum.

I need to get back to yoga. My back was way less likely to go out when I practiced yoga regularly.

When I was younger it was kind of amusing. Now it's just a pain in the arse as even though I work in an office I am bloody knackered by the end of the day. Cannot wait to lie on a cushy sofa. And it's hard, because no-one's heard of it and people just think I'm lazy or "delicate". Well, I am delicate, but it's not fun!

When I have a week off I go for walks, go to yoga, and spend an inordinate amount of time lying down.

No advice, but commiserations.

Both me and DS8 have been diagnosed with Ehlers Danlos type 3. Ds10 and DD6 south joint hypermobilty. Keeping your core tight is the most important thing. Yoga and Pilates are a must. Tiredness unfortunately comes hand in hand !

Thanks for the info. I will have to do more investigation. Hope you feel better.

@Graphista when i mentioned my skin being lax at only 30 it was the breast tissue i was mostly referring to... i had awful SPD during pregnancy and didnt realise it can continue after pregnancy as a complication of HMS - luckily it didnt but recently the pelvis pain is exactly the same 5 years after giving birth so unsure about that now.

Sorry DD has to go through it too, i do have a feeling DS has it, he is very wobbly on his feet and comes across as clumsy and his skin is ridiculously stretchy.

@lizzieoak i really need to get into yoga/pilates by the looks of it, i have never done it not once.

You hit the nail on the head there with the being tired after sitting at a desk, even though i also do just that by the end of the day i feel like ive been doing landscape gardening instead and i also need a sofa or bed to just lay down and let my muscles stop burning up!

Its nice to hear from other people who are in the same boat though i thought i was just lazy and using the HMS as an excuse!

@IceBearRocks if you get a specific diagnosis do you get anymore help or different referrals? I definitely need to get onto Yoga/pilates as i said before i have never done it - my core is rubbish i know that much as the physio did a lot of core work!

@Goosegettingfat thank you and i hope you guys get your answers - hopefully it is just a very mild case

Ugh, the joys of "being bendy"! I was diagnosed around 26 and it's been bucket loads of fun ever since... It was all quite amusing in my 20s but after having my DD (who also has it), things went t*ts up.

If you're still having the SPD pain after all these years, I really think it would be worth getting a referral to a rheumatologist to get things checked out really thoroughly.

Strength training is GREAT and really important. I'd concentrate on consistently doing it, rather than adding more weight. I had years of physios telling me to lift baby weights for 50 reps and then I started weightlifting properly and BOOM. No more shoulders out every morning, dislocating kneecaps decided to behave a little more and I felt a real difference.

I was given a red card by the rheumatologist for doing yoga! I think the dynamic yoga classes where you don't spend much time at all in any one position is best if you really want to try it. The aim is to stay in the middle of your range of motion and avoid overextending for any period of time...but then when you're bendy, you don't really know when you are overextending!

Pilates is a Godsend. This may help with your upper back pain. That would be another reason to see a rheumy. I ended up having steroid injections from T5-T9 and it was heaven. I didn't realise just how much pain I'd been in. For years!

I'm afraid the fatigue goes hand in hand with EDS, along with POTS, too. One thing I've tried over the past few years is the Alexander Technique. It can help you to use your body in a more protective way and also helped quieten down the myriad of signals I was getting from joints, trying to bust themselves out of place.

Apologies for the essay - but this frankly sh*tty condition can effect so many different things. It affects everyone differently, even from generation to generation. Here's hoping we can all go from strength to strength!

PS. @Graphista - Have you had your DD checked out on the mast cell front? The latest thinking (e.g. over the past 5 yrs) is that there is a link between EDS, POTS and something called Mast Cell Activation Disorder. This can cause headaches, significant allergies and issues with the autonomic system (e.g. palpitations). Not sure if this helps, but it could be worth checking out. Here's a link to presentation info by Dr Anne Maitland (in the US) ehlers-danlos.com/2014-annual-conference-files/Anne%20Maitland.pdf

I don't have slack skin, the opposite actually - maybe that's more an ED thing?

I do hot yoga, which should mean over-stretching, but for me it seems okay. The warmth is lovely and it certainly makes me strong. Problem being that where I live it's very difficult to find part-time work (except in a shop, which I can't afford to do), and full-time work is really hard on me. It exhausts me, hurts my arms (the typing), and I have no time for yoga. I find it frustrating that I can't protect myself.

I think sitting in one position all day and doing repetitive work is very hard on our type of bodies. I get no sympathy for it, but I'm my own hero for continuing to show up.

Probably why I've gotten so many bouts of flu since I started - I'm run down all the time.

@InTheseShoesIDontThinkSo thank you for your post its sooo informative! How did you go about getting referred etc? I mention my issues and just get a "yes... you have HMS?!"

I can be more forceful but im unsure exactly what to request, do i just "refer me to a rheumatologist please" or do i go down the history route (again!!) and then say i need further investigations and let him/her decide on the next step?

@lizzieoak i hear you, its the exhaustion (and my back) that does me in the most. I need to get back on the strength training as i havent done any for ages and i know about it when i dont. But i finish at 3pm daily and once LO is sorted picking up the weights is the last thing i want to do, then i get cross that i even have to do it in the first place

Is it definitely a rheumatologist who diagnoses ?

I'm trying to get a referral for dd, see pics.

She cannot feel her knees going backwards and we've been told (by a physio we saw for something else, so no treatment for this) that she's storing up problems for later life if she doesn't keep them within the 'normal' range of movement