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.

Sorry, posted the same pic twice, here's the knees overbending backwards one. I have to tell her about 20 times a day to stop because she can't feel herself over-bending.

The pic is the right way up in my files, but it's rotated 90 right when I previewed it on here. no clue how to fix that, sorry, but you can still see.

Looks like her knees are hypermobile blank, that's how mine go if I "straighten" my legs. She needs to learn not to lock them, it will feel to her as though her legs are slightly bent if she holds them correctly. Hopefully you might get some advice at your appointment.

My hypermobility never really bothered me until a year or two ago when I had problems with a shoulder, I didn't know I was hypermobile until I saw the physio and I have to say he wasn't much help.

My main problem is joints clicking all the time, shoulders, hips, back, wrists, everything basically... When I turn over in bed it sounds like stamping on a piece of bubble wrap but louder. The Dr didn't seem to have any answers. Also when I was pregnant my hips were agony but nobody thought it was hypermobility. I have 2 children but the thought of that hip pain would put me off having any more. 😞

I find pilates helpful to strengthen but not stretch. I used to do yoga but had to stop because I was overstretching and didn't realise.

I get pissy about having to exercise too. And I've basically given up the last ten months as I'm working full-time and shattered in the evening. My co-workers come in and talk about having been out the night before and I'm agog that anyone has the energy!

My contract is finished soon so I'm going to sign up for a yoga studio (cheap Intro month thingy). Really blitz it!

I am beginning to think this is why I've had flu four times this year. It's the first time I've worked over 30 hours a week in years and being so tired from basically sitting still all day is making me really run down.

My physio said office work is one of the worst kinds of things for us as it involves repetitive motion and no range of motion and having to hold our bodies still in an uncomfortable chair.

It's frustrating for me as I haven't really accepted yet that my body can't do this, even if 95% of the population can. And even my friends (I suspect) think I'm being a bit of a slacker for finding it tough.

Thanks for op and intheseshoes comments.

I am learning continually about this condition (and I trained as a nurse! But little was known then).

We've had headaches, breast pain (beyond normal growing pain), eye mouth and ear infections, was born with a squint which at the time was treated like a lazy eye we now know that was wrong. Palpitations yes so I will look into that.

I have 2 problems

1 she doesn't feel pain when she's overextending and so doesn't self correct. Shoulder dislocation regular and she doesn't even notice Any more I do

2 she's a stoic little besom! Never complains RARELY cries about ANYTHING pain wise so when we were in hospital last year with an hms related infection I had to explain to the Drs that she tends to play it right down.

People forget muscular disabilities like this affect ALL muscular tissue, so skin connecting tissue (especially at knees and elbows) eyes, jaw, stomach muscles and the heart IS a muscle.

We were VERY lucky plus I got a bit assertive when we are at a&e for yet ANOTHER sprain the 11th in 8 months plus taking ages to heal etc, that we saw a locum newly qualified dr who spotted it and requested a referral to a paediatric orthopaedic dr who noticed it before we sat down!

We'd been going Gp's for several years with clear symptoms but because you don't see same gp every time it doesn't get picked up. Not blaming Gp's for this but the system.

Lizzieoak dd has physio to do daily, hates it but does it. Her PE teacher was a cow about it. A combination of not believing us and thinking dd had to just "push past the pain" despite a CONSULTANT letter saying the exact opposite

I ended up making appointment to see her and showing her pics and video of dds joints to show her the effects of "pushing past the pain" - she was very apologetic after that.

@blankface my legs are also like that as are my elbows but i never hold them like that anymore. I slipped (didnt even fall just a small twist) on ice a few years ago and i ended uo with a torn miniscus and torn ACL (cartilage and tendon) it was agony and still is if i catch it wrong.

I have bad wrists so i never lean on my hands (when getting up or doing press ups etc) i always make fists and use them instead like a real man beast. If i dont they have a nack of bending back too far then they flare for a few days.

Im automatically protective of my joints now and my knees dont hyper-extend or my wrists or elbows. When i go running (like never) i'm all over the place and if i run on grass i look like drunk, have no control at all!

DS sometimes sits on my legs/ knees when i have them up on the sofa straight out and its an instant panic moment because he makes them bend back too in the wrong direction

@Graphista i never felt pain until i was around 23 but i always had overextended joints as a child too, so hopefully DD isnt in any pain

Apparently (according to google) the reason youre more susceptible to PoTS with HMS is because all the tissue in your body can become lax like you say, so including your veins etc so they become less pressurised and effective at pumping blood back up against gravity... could explain some of DD symptoms? Unsure if that could cause headaches.

@Graphista glad you put PE teacher back in her box... push past the pain!! Gobsmacked.

Pilates and private physio is what sees me through. My pilates class is run by a physio. It has taken years to get the strength in my muscles to mostly handle my condition, but it requires daily exercises as well as recognising a flare up and resting.

thank you soo much ladies for the help/advice and chats, its made me feel less like im "just making excuses/being lazy" and made me see it is a real condition with real symptoms and that i am not being daft to go to the doc and ask for more help!

i really hope you all stay as symptom free as possible and that your DCs do too

@delilahbucket strength is best for me too! It doesnt help my wrists or back AS much but my hips and shoulders and general fatigue are much better. Its just getting the motivation, which is bad as how can i complain if i cant be bothered to do whats needed to make it better just get in after work and "ill start tomorrow".... yeah course i will

I hope you don't mind me gate crashing this thread. I have HMS and both ds1 and ds2 show signs of it. We all have different internal symptoms as well as the flexibility and bruising. Ds2 appears to have episodes of sleep apnoea where his SATS drop to 87% but medics have done three sleep studies and say they don't know why. He also has allergies and bowel and bladder issues. I am convinced it is all linked, but the medics won't look at him as a whole. Do my of you have the apnoea side of it?

@SurvivalOfTheUnfittest im glad i posted and im glad you hijacked! I have never linked any of it, i dont think i have sleep apnoea (partners have never mentioned anything) but i have always worried about DS (who may also have HMS) having apnoea. He sleeps with his neck arched back at an abnormal angle, not just slight but it looks painfully uncomfortable. And he sleeps like this all night every night. If i adjust him he goes straight back to it.

This can be a sign of sleep apnoea i believe?! Anyone reading feel free to correct me or tell me any other possibilities!

Its really hard, it can affect any tissue in the body really so i think the main way they diagnose is by ruling out other conditions, which is slow and frustrating i know

I'm currently investigating the true cause of my chronic lower back, hip and leg pain coupled with severe fatigue. I don't think I'm double jointed but I can bend over and place both hands on the floor and wrap my fingers over each other, I'm mostly stiff and aching now though :( anyone else able to do the hands on floor thing?? it makes no sense with how stiff and clumsy I am!

I'm "double jointed" too, although I definitely don't have EDS. I have a hard time figuring out which of my symptoms are a result of the hyper mobility vs other factors.

I have VERY similar back pain to you, OP, on both sides, for many years now. It's the worst thing in my life. After many consultations with specialists, rays, MRIs, bone scans, etc., the pain has been attributed to spinal disc herniations in my neck and upper back. (This was mostly before I moved back to the UK so it was easier to get the diagnostic stuff done.) I ended up having a two-level spinal fusion surgery two years ago with titanium plates and screws. It did NOTHING at all for my pain, so maybe it really is just down to hypermobility. It is notoriously difficult to match up clinical complaints to MRI findings, but I saw so many docs that all agreed and I thought we had it right.

Anyway, since then I've gotten really bitter and bad about exercising, but I need to get back to it. I rely pretty heavily on various types of prescription painkillers... some people frown on that but it gets me through the day. I remember the day I first took a "heavy" (though really not that heavy in the scheme of things) painkiller, I was able to cook dinner AND do the dishes after, for the first time in years. It really helps but it's far from perfect, and I hate being dependent on a drug to take care of my family.

As a side note, ive always been told no yoga and only "proper" Pilates too. But really I've been shit at doing anything lately!

Can I join you? Diagnosed with EDS and Fibromyalgia 5 yrs ago, I have chronic pain and use a wheelchair. Have DS who is also showing signs of hypermobility. I was only diagnosed after having DS but symptoms most of my life.

I do Pilates and have found it really useful, I claim PIP and pay for a 1:1 instructor..

Can I join in? I'm hypermobile and having a bad flare up at the minute, numerous ribs keep coming out of place daily, I have them put back and they come out again, despite my best efforts to keep them in place. It's bloody painful, especially when more than one is out and the pain causes me to compensate in my movement, causing flare up of my SI joints.
I've had back pain since 18, started with coccydinia, progressed to SI joint dysfunction and myofascial pain syndrome, pregnancy then caused SPD which has never gone away (DS now nearly 4) My physio attributes all of this to hypermobility. I have the over bendy thumbs, overextending elbows and knees (standing for long is terribly painful) as well as the creaks, cracks and crunches. I have to dislocate my jaw to open my mouth, it often gets stuck shit overnight, meaning I need a painful dislocation to open my mouth in the morning. I'm constantly tired, run down and in pain. Luckily I've found an excellent private physio who treats my trigger points with dry needling (OP could your bra strap painful lump be a trigger point? Sounds horribly familiar to me) and replaces my ribs but I am seeing GP next week to discuss pain management as I'm not coping well, especially at work (2 days in an office FFS)
Does anyone else find that their HMS 'flares up'? My pelvis is regularly worse when I'm pre menstrual but other areas e.g. My ribs are fine for months then start misbehaving seemingly out of nowhere. My thumbs and wrists were bad a couple of months ago but are more manageable now. Anyone know why?
I'm so pleased to have found this thread. My life feels like utter shit at the minute, I can't even hold up my hairdryer or a full kettle let alone attack the garden like I want to. It's kind of nice to know I'm not alone, though I'm sad so many others are suffering too

Stuck shut!

Forgot to ask, has anyone tried low dose nocturnal antidepressants ref pain? Saw this mentioned on the HMSA website. I'm currently using diclofenac for muscle pain (not for long as dr has stopped prescribing it due to heart concerns) and naproxen twice daily to take the edge off the rib/chest/back pain. I've tried co codamol but couldn't cope with the constipation (don't need any help there) Nothing seems to help much

Don't do yoga.

Pilates is great. Walk as much as you can. Be careful at PMT time, mine gets much worse and I med up shamelessly.

Graphista, in a previous post you mention hearing issues.

There are a number of collagen disorders, and yes they affect all of the tissues throughout the body (variable effects depending on what other genes have been inherited along with the collagen defect).

Mention of hearing issues would make me suspect Osteogenesis imperfecta (OI, brittle bone disease). The majority of people diagnosed with this have the milder subtypes which could easily be diagnosed as hEDS.
In my own case (and that of close family members), we fit all the diagnostic criteria for hEDS but have had genetic testing which confirms OI - within the family there are some hearing and dental issues some (but not many) unusual bone fractures, and nobody ever put that together with the joint and muscle/tendon issues and realised it was actually ALL down to one single genetic condition, until we did ourselves- and requested testing (after a particular fracture incident).

lettucewrap interesting I'll look into that. Dd has never had a break which I thought even when she was younger was unusual as some of the accidents she had were crackers!!

Amongst the (diagnosed OI) members of our extended family (almost a dozen affected), none has had more than 3 fractures, but the nature of the fractures has been unusual. About half of the affected members have some hearing issues, and dental/jaw issues.
All have significant hyper mobility affecting shoulders, elbows, knees, fingers/thumbs, back problems. Lots of dislocations, subluxations, muscle/tendon tears. All have grey/blue or blue sclera (whites of the eyes), although in some this was noticeable in childhood but not so apparent when older.

I think that actually, a LOT of people with OI and other collagen defects are getting fobbed off with diagnosis of hyper mobility (and told it's benign), or EDS (and not given genetic testing/and told it's relatively benign), and then told, for years, that their long lists of other symptoms are nothing to do with their joint/muscle problems and it's all in their heads, when in fact they are all related (can you tell I'm a little bit bitter ?). Hopefully things are improving now and will continue to do so in the future as understanding of these conditions improves.

Hi, just to say i'm still here and hoping to settle later and read all of your posts, been away visiting for the weekend and just got back. Exhausted!!

I had hearing loss from about 8 with no known cause, I was diagnosed in the last few years with OI (as has dd1) also have classic jaw and dental issues, blue sclera, joint hypermobility, 10+ breaks. It was so wonderful to finally have a reason for my constant pain and surprise to learn that everyone doesn't have collapsing/sublaxing joints all the time lol.
Graphista is your dd under an endocrinologist? It took us a long time to get someone to take us seriously about dd (i am eternally grateful to the fracture clinic Dr who pushed for the referal) but her team are amazing and have been so helpful with the team of ot's and physios.