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.

[bananafish81]

Oh and obviously my proprioception is diabolical!!

I've been working with a bio mechanics specialist and that has definitely helped my posture massively - although the biggest battle in some respects has been my mind and trying to have better self awareness of where my body is and what it's doing, more so in some ways than changing how I hold my body itself

[bananafish81]

I have benign JHS - I score highly on the Brighton and Beighton scales, but only on the musculoskeletal criteria - subluxations, arthralgia, hypermobile joints and hypomobile muscles, headaches from jaw pain etc. I don't have EDS as I don't have POTS, local anaesthetic resistance or mitral valve or GI issues.

(I also have significant chronic pelvic pain from a spinal injury - this is certainly exacerbated by the hypermobility, but originated from a very specific accident)

One of my physios said I had possibly the most hypermobile ankles he'd seen in the last 4 years! Lots of strength training and decent orthotic insoles massively helps, as does very strong deep tissue massage.

I take strong opioids for my spinal pain but they honestly make limited difference to my hypermobility issues - self care exercises and manual therapy are really the key thing managing this side of my pain.

[HamSandWitches]

From what*

[HamSandWitches]

The click jaw is inherited from me but I don't get pain. Dd is in agony with her's. Not sure as I have only recently got a diagnosis but I'm using 2 hospitals, one for the tremor who also diagnosed the hypermobility, they then referred me to the 2nd hospital for her jaw. They gave her a mouth guard but she said it makes her feel worse. The jaw from heat they said is part of the hypermobility but the tremor is separate.

[glitterysand]

@HamSandWitches so is the clicky jaw connected too?

[Changednamesorry]

I have Rheumatoid Arthritis . NHS robbed me off as "hypermobility" for years.
Live in Spain now.....went to GP about joint pain just as I had in UK. Blood test showed rheumatoid factor of 143 (positive is anything over 20 I believe) CRP high.....and was diagnosed within weeks. I had x-ray too.....thabk God I had no visible damage either.
The morning stiffness and the painful joints are pretty characteristic of R.A ....I would insist on a blood test for this if nothing else to rule it out. I am now on medicine and in less pain than I have been since I was 15 years old (I'm 33). I hope you don't have R.A but if you do it's better to know and start treatment as it can have very good outcomes if caught early enough.
best of luck.

[HamSandWitches]

*seeing

[HamSandWitches]

Shes still at schooL as well. I have the clicky jaw but with no pain, we now think one of my brothers has the tremor and has had it from being a child. It's all pretty recent so sing doctors and what not. They gave her a guard for the jaw bit it's not helping. The tremor they are not medicating as she is young and she is managing at the minute but can get embarrased at schòol.

[StillMedusa]

Hamsandwitches... interesting. My DH (not diagnosed with EDS but the kids are) has a severe essential tremor..as do 3/4 of my (adult) children...

[HamSandWitches]

Marking a place. Dd has been diagnosed but also has TMJ and benign essential tremor.

[ArkadyRose]

It's now believed that HMS is actually EDS, hypermobility type - and POTS is very common with EDS.

[NikiBabe]

Someone tells me about POTS.

My heart races when I stand to maintain my blood pressure and I have palpitations. My GP has never mentioned a link with hypermobility. He put it down to something else.

[NotCitrus]

Only got diagnosed with HMS after two tough pregnancies where my pelvis and most other joints fell apart - I have muscle tension which stops actual dislocation but I'm constantly injuring myself - no balance doesn't help. It's obviously hormone related so I have a week a month falling apart then not too bad the rest of the time.
The last pain consultant I saw said I could have diagnoses of EDS and fibromyalgia as well but didn't have any new ideas for dealing with those. ..

[TooManyPaws]

I have osteoarthritis in my hands, feet and knees, and it was the rheumatologist who told me that I was hypermobile. I have always been very flexible with yoga etc and have had weak ankles all my life. I am on prescription paracetamol and just use sports supports whenever one or other joint is annoyed. The really annoying thing is getting used to not being able to wear all my pretty shoes; against that, I'm getting an awesome Doc Martens collection.

[MissWeakAnkles]

Sorry, meant to add this

patient.info/doctor/hypermobility-syndrome-pro

[MissWeakAnkles]

Totally agree lizzieoak. Knowing WHY is an essential part of educating yourself about any health issues and understanding the strategies you can put in place. Until this thread (& my POTS discovery) I thought I was going CRA-AY-ZEEE

Though typing on here is exhausting. I will be back!

[lizzieoak]

So much of this is making me a bit tearful, in a good way. I’ve gotten used to so much of it, and feel like a nuisance to my family, and a bad employee ... it’s very reassuring (of that doesn’t sound odd) to know that it’s beyond my control, that is not a lack of moral fibre.

[Itsanicehotel]

glitterysand. You are right to do some investigation on behalf of DS. If I could go back in time an early diagnosis would have been so useful. Instead of each symptom being looked at in isolation year in and year out then I could have had an appropriate excise plan, learned about joint protection etc.

I would google autonomic system issues and EDS/hypermobility. My DM had tachycardia and a cause never found. I have dropped beats and occasional palpitations but am on beta blockers for high blood pressure that may well mask them as I don’t suffer like my DM did. I also can’t control body temp well and am either dripping with sweat or freezing whenever there’s an upward or downward shift in the outdoor temp. I have always had insomnia and get easily over stimulated in busy/bright environments and need to do something quiet to calm my head afterwards. DD has POTS and gets very low blood sugar. So there is a fair bit of autonomic disfunction associated with HMS and EDS.

[glitterysand]

Thanks @MissWeakAnkles I will mention it to him again, I have tried before and he really wasn’t interested but will pick my moment and try again.
I’m very sorry that you have such health issues that you are limited in what you can do.
I completely agree with you that it’s reassuring to know there is a reason for the symptoms rather than just ‘falling apart.’ Pots sounds scary.

[Lethaldrizzle]

I've had hyperrmobility problems but I keep pretty fit so all my joints and muscles are strong

[MissWeakAnkles]

glitterysand that must be tough for your DS. I can understand him not wanting to investigate further. You are right though. A firm diagnosis and overall care/treatment plan would make much more sense than just treating the individual symptoms (which is what happens with 'ME/CFS' - with mixed success rates )

If I could go back to his age, I would want to get diagnosed now. From what everyone is saying, regular core strength work, correct meds & lifestyle changes earlier on, could prevent some of the worse stuff happening later. For example, when I stopped pilates (ME/CFS) I ended up with a slipped disc that still gives me trouble today & makes me feel old before my time.

[MissWeakAnkles]

elliejjtiny. Sorry to hear about your MC's and premature babies. Stressful. I hadn't thought my 4 MC's might be related to HMS. They were all before 13 weeks tho, so assumed chromosomal. Pregnancy played havoc with my POTS though, I could barely stand.

Also just remembered my toes used to 'pop out' as a child. Just the odd one. But I didn't know how it happened & it freaked me out at the time .

My DB used to piss himself laughing at my wailing

[glitterysand]

Thanks @Itsanicehotel he is on beta blockers but seems very young to be on them. I’m going to research and compile a list of symptoms for HMS and ed (?) and show him. His heart rate generally is slower now although he had to go to ed a year or so ago because it started beating so fast for no apparent reason and despite giving him three tomes his usual doe took hours for it to regulate. I wish he could just get diagnosed with what I think is HMS so there would be a reason for his joint pains, migraines, indigestion, back and neck pains etc so he wouldn’t take such a cocktail of drugs to try and alleviate each individual symptom.

[ringle]

I'm hypermobile, especially in the shoulders, have scoliosis and thoracic outlet syndrome. All linked.

Dropping all my favourite hobbies and a life sentence of Pilates three times a week helps me carry on working.

Oddly I have no pain but my hands stop working due to spasm so in its own way it is serious.

[LancashireTea]

Sorry for the delay @missweakankles. I don't really deal with the adrenaline. I was anxiety meds and they helped a little, but I just try to not over stimulate myself. It's a massive battle that I'm only just beginning to deal with. Sorry for not having much advice.