To ask if there are any of you out there who suffer from Hypermobility?

[MrsOverTheRoad]

I've been looking into it as someone mentioned it in relation to myself and I feel as though I might have discovered why I've been in such pain.

Can you tell me about your symptoms please? I've been suffering painful ankle and knee joints, back, shoulders, neck and wrists for years but now I am 45 they've got worse recently.

I can barely walk in the morning and if I sit still for an hour or more, it's bad again. I notice it gets less the more I move about.

I had an x ray a couple of years ago as one ankle was so bad...but it came back clear.

I can touch the floor with both hands flat on the ground easily...my arms seem to turn almost all the way round and my thumbs bend almost to touch my arm...I can also join my hands behind my back when I put one over my shoulder and the other up around my waist.

Is there any cure or help if I am Hypermobile? The pain is really getting me down lately.

One thing I forgot to add is that it affects my jaw at the tempremandibular joint causing ear and head ache but wearing a mouth guard made by the dentist helps enormously with these.

My eldest has classical EDS (she's 25), my dd2 23 is awaiting formal diagnosis and my youngest almost certainly has it (tentatively diagnosed at 4 but has a ton of other issues too... he has scoliosis, wears leg splints, has autism) My other son is not affected.
Both of the girls are so hypermobile it would be funny if it wasn't so painful...they are like rubber bands.
Unfortunately they both suffer from repeated dislocations and subluxations... eg dd2 dislocated her shoulder rolling over in bed! DD1 also has POTS, heart problems, severe digestive issues and is on a ton of meds to keep her mobile. She has physio, hydrotherapy and is splinted all over to keep her upright . Likely to lose her mobility within the next few years unless she is very lucky, which is shit, especially as she is a doctor herself and her life is running from one ward to the next!

Pain management and physio is really important, but you have to really push for it, and there are few specialists. My dd1 was lucky enough to be working in a hospital where there is an EDS specialist when she was diagnosed, if you are in the south west I can recommend a specialist!

Hello. I have a diagnosis of type 1 (classical) EDS. I was diagnosed in my early 20s after I self diagnosed because I realised my symptoms didn't entirely fit with the diagnosis of CFS I was given at 16. I was later diagnosed with fibromyalgia too.

I am not hypermobile in all joints. In fact, there are only a few joints I regularly dislocate - ribs and wrists being the worst. I sublux (partially dislocate) a lot if joints, my knees lock and my vertebrae are hypermobile too.

I've done quite a bit of physio/jydro/ot and strength training with weights to stabilise my core and my arms and shoulders. This has kept me fairly physically fit and mobile compared to most people I know in support groups. I still suffer a dreadful amount of pain though and most anaesthetics and painkillers don't work for me so i mostly use heat to manage my pain. Ive done a chronic pain management course and that was pretty amazing for me as I learned to pace, which I've not done before.

As a classical type I do suffer with a lot of internal issues around tissue fragility - gut, heart, eyes, genitourinary etc. And I've had a fair few things rupture. But I'm getting pretty used to all the ops and things now, lol.

I'd get yourself referred to a rheumatologist and then on to a specialist, but be warned that not all rheumatologists are very knowledgeable. Many people I know chose to see specialists privately. There are some good ones in the South East/London and I'm very lucky to be very near by to a centre of excellence. They've also just changed the diagnostic criteria, so if you don't got one of the other types and don't score highly enough to get a type 3/HEDS A diagnosis then you may be diagnosed with a new subtype called Hypermobility Spectrum Disorder. However if they suspect other types they will recommend genetic testing, although that's not exact either. There's no denying I have EDS rather than HSD but all my genetics tests were negative or inconclusive.

*hydro

NC'd for this

Ever since I was a child I have been considered double jointed, particularly in my hands and arms, but to a certain extent elsewhere. On the Beighton Scale I score 8 out of 9, but the other point is unmeasurable due to other health things that obscure it. 3/5 on the 5-point questionnaire. My natural range of movement is just significantly beyond what you'd expect; very occasionally someone will notice (say) a finger joint in a funny position and comment. If I want to gross people out, my double jointedness can still be used as a party trick

Bruise easily - I always have several bruises on me, and on idea where they came from

Scoliosis - more common in people with hypermobility, but it doesn't tend to be listed as a key symptom of hypermobility. It did progress very very quickly in me though and required surgery

As a child I had "weak ankles" and frequently turned my ankles while doing normal activities

No joint pain

No dislocations (ever) and no bone breakages that you wouldn't expect under the circumstances of various prangs I've had (no brittle bones)

I have wondered if I'm at the mild end of Ehlers Danlos syndrome, but have never sought to have it formally diagnosed because I don't want travel insurance to get more expensive

Hips are super flexible. I can move my legs in way beyond the normal range of motion. Was always great at yoga, ballet, can do deep squats like a sumo wrestler. The older I got they are both inflamed and irritable and crack.

Ditto my knees and wrists, I have synovitis in one wrist. :(

As a child I had "weak ankles" and frequently turned my ankles while doing normal activities

Oh yes that too! Simple running in a straight line made my ankle buckle.

It is a relief to wake up this morning and 'meet' other childhood ankle turners . I just thought I was a floppy weak child.

Didn't realise how much suffering is caused by the vast spectrum of hypermobility, some of you are really bad. Once I've sorted out my 'floppy veins', orthostatic intolerance and tachycardia, I might ask for a rheumatology referral. Maybe I won't need my wheelchair after all? Or maybe I'll need it sooner!

That's impressive Rhoda that you self diagnosed, knowing that your symptoms didn't 'fit' CFS. Inspiring to hear about your core/upper body strengthening too. Please could you share your recommendations for South East specialists? And the Centre of Excellence. Thank you

Hi I have many of the symptoms lots have mentioned and recently when seeing a podiatrist she said I have hyper mobility in some of my joints. My fingers don’t lift at 90 degrees but my toes do!!

I have, since knowing there was such a thing as HMS, thought my son has it (he’s 24.). He doesn’t really want to be diagnosed with anything but what I am concerned about is the fact he went to the doctor because his heart kept on beating too fast and they have put him on tablets to slow his heart down. Is this a symptom of HMS and if so - does anyone who knows about it think that he shouldn’t be taking these tablets?

I have joint hypermobility sydnrome, am 45 also and was diagnosed literally two weeks ago.
I had a thread on here about a week ago, about how to approach a GP , symptoms and what were the best things to do.( no idea how to link it but if you search my user name it should pop up) I got some excellent advice from some really great people.
It's not particularly fun.

Hello CommanderDaisy. I remember now I read your thread! B52 Bomber!
Then forgot about it. Stoopid brain.

Hope you don't mind me linking it here.

www.mumsnet.com/Talk/general_health/a3060433-Hyper-mobility-pain-and-my-doctor?msgid=72727720

It's helping me to collect evidence too. As you do, when you're a woman of a certain age with ridiculous symptoms which disable your life, but don't seem to be taken very seriously

glitterysand palpitations are a feature of EDS hypermobility. Not sure about HMS without EDS though but have a feeling it is. Another symptom is mitral valve prolapse and as soon as rheumatologist diagnosed me she arranged an echocardiogram to rule it out. It’s very unlikely your son does have that but if you have HMS or EDS it is worth getting him checked out. I’m guessing your Ds is on beta blockers. How are his palpitations now?

Once I've sorted out my 'floppy veins', orthostatic intolerance and tachycardia.

Wtf.

I have the tachycardia et al. Is that related?

I have hypermobility-type EDS, and I've found pretty much all my health issues are linked to it. My gastric reflux? That's the sphincter muscle at the top of my stomach being weak and crap. Poor eyesight? That's the EDS. Weak teeth? yup, EDS again. IBS? Yup, tick that one off the EDS checklist too! Inguinal hernia - yep, that's a common one with EDS. Even the form of epilepsy I have is one that is frequently linked to EDS. I sublux joints all the time; I dislocated my left shoulder a couple of months ago just getting out of bed. I had to give up jogging because of an ACL tear - which is more common when your ligaments are weak and poorly connected to begin with. When I stand up, I get little papules appear on the sides of my feet - that's the fat herniating through the collagen layer and only happens with EDS.

It got to the point that the ongoing chronic pain led to fibromyalgia (yay, my body's response to pain is... to give me more pain!). I'd figured out I had EDS before I asked for a referral to a rheumatologist; he diagnosed EDS straight off but the fibro diagnosis was unexpected. As was the ankylosing spondylitis, though he said that there's definitely an autoimmune component to EDS so he wasn't surprised at AS showing up as well. The good thing about diagnosis means that there are medications that can help however; I'm on pregabalin (Lyrica) which does lower the pain levels to something manageable and means I don't spend six months of the year having to use a walking stick. Silver ring splints stop my fingers subluxing and mean that I can carry on playing flute, violin and guitar. Swimming is great for exercising whilst not putting too much stress on the joints. I do weightlifting to build up core strength so my muscles can do the job of keeping my joints together instead of relying on weak tendons and ligaments.

There's no cure for hypermobility/EDS, but there are treatments and ways to mitigate the worst effects.

I'm peeking through my fingers here, not wanting anyone else to join and start listing issues. Acid reflux, tick, poor eyesight, tick, clicky dodgy knees, another tick .

I had no idea there was a connecting reason for all this. My DH will be wanting a refund soon

@NikiBabe Apparently so. I'm awaiting a POTS assessment and can't stand or function normally without tachycardia and massive adrenaline issues. This article I posted at the beginning of this thread made me feel better. The POTS may be more hypermobility-related instead of ME/CFS related. We shall see.

www.dynainc.org/docs/hypermobility.pdf

Sorry @MrsOverTheRoad

Didn't mean to jump on your thread and take over. This has been so helpful.

How are you doing? Have you made a GP appointment? I agree with you. You shouldn't be in pain at 45 and struggling to get going in the morning

Another one with HMS (but not EDS) here. Diagnosed accidentally after a car accident (insurance company sent me to a specialist after their GP was concerned about my whiplash injuries) It was a relief in some ways - all the little niggling symptoms being due to one thing raher than just being generally crap.

Mine expresses as chronic joint and leg pain as a child/teen (aka 'growing pains') and the weak easy twisted ankles, severe dental phobia due to immunity to local anaesthetics and crap, over crowded teeth, joint pain, hips that partly dislocate in certain positions, reflux, interesting pregnancies leading to double prolapse, slow healing of sprains and pulls and on it goes. I know I'm lucky though as my friends daughter has full blown EDS and that puts my aches and annoyances into perspective.

I need to get my arse into gear and start doing something like pilates, and I know I should lose weight.

I'm hypermobile too, I was diagnosed in my twenties after a GP wondered why I had such a severe knee sprain despite not having had any sort of accident. No one had thought to connect the dozens of times I had sprained my ankles, knees, wrists or elbows over the years or why I bruised so easily. The GP initially sent me to an Ortho who was useless, which made the GP mad, then to a Rheumatologist who declared me hypermobile. I was given a very brief description of what hypermobility was but that was it really, I was just told to expect more strains and sprains

I did a bit of research myself and discovered a lot of things I'd been living with - IBS, fatigue, foot problems etc - are actually connected to the hypermobility. I've found that strength training really works for me and the stronger my 'big' muscles are the more of the strain they take off the ligaments in my joints. I also do pilates (yoga is a total no-no for the bendy of joint) in a physio-led class and I wear orthotics for my flippers.

Lots of people seem to think being bendy must be great but actually it hurts and I hate it! I should really buy shares in anti-inflammatories..........

So many things here that I didn’t realize were down to hypermobility! Acid reflux, ankles turning over as a child, crap teeth, migraines. Some things I am used to and can put up with. I’m used to my shoulders always being sore for example. It’s the card I’m dealt. My headaches and migraines however, affect my day to day life hugely. I keep going from job to job as I take sick days due to migraines starting a couple of hours into my work day and this affects how I’m perceived. Supervisors tend to see a weak link and no matter how much they acknowledge I’m a nice person & that I try hard they resent me taking at least a day off a month and then my performance reviews suffer and that gives me anxiety. So it’s not fun.

Right now I’m between contracts and am having 2 hour long baths a day. I think being in warm water just feels so good.

I’m trying to use the time to do a lot of walking and yoga as well as the previous 10 months of sitting still all day was really, really hard on my body.

I’m confused as to what kind of work might feel better actually. I’ve been doing office work but find sitting still all day typing impossible. My last contract was a lot of typing but I could get up every 45 minutes or so to collect new Work to do and I alternated weeks w another member of staff where I’d collect Work for others as well. But that amount of sitting wasn’t great. When I asked my physio if I could do eldercare, though, he said it would be too physical. So what’s a good thing for us to do?

I can personally recommend lying about on an electric blanket, a plug in Shiatsu massager for the painful knotty bits and a deep lymphatic massage as often as you can afford it But that doesn't pay the bills. And frankly it's getting monotonous.

Flexi-time, flexi-changing positions without too much lugging about of heavy stuff? With plenty of time to keep up with the pilates that we should all be doing each day on our core!

I would love to find work with flexible hours but it’s as rare as unicorns around here (which is to say nonexistent, unless you’ve got very specialized skills).

I’m fairly tired even when not working. When I’m working I’m just exhausted.

At my last contract one of the men was saying he’d gone to play ice hockey at 11:00 pm and I was agog!

People think we’re lazy (hms), but I think we’re very strong for struggling on!

Does anyone know why the bruising thing happens? I hadn't made the link. Latest example attached. Just appears like this. Usually on legs. I'd put it down to having really bad varicose veins which started at 18. Joy!

Varicose veins are connected to hypermobility....so I've read. I'm guessing that and the random bruising we get are because of 'Floppy Veinage Syndrome' ?

I am really hoping someone medical or more knowledgeable comes along to answer you properly Catsize

Actually, judging by your name, are they cat paw bruises from night-time visitors when you're asleep?

I have it and so do some of my dc's. My 9 year old uses a wheelchair.

My main symptoms are pain and subluxions. I can bend my thumbs right back. I've had 2 miscarriages and 2 premature babies. I also find certain medications don't work for me including the contraceptive pill. Which is quite common really but I didn't know that until after my 2nd unplanned baby and neither did my gp.