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.

I've got HMS, fortunately not as badly as some people here. One thing that makes a difference for me is Omega/fish oil (whatever's on offer). I didn't think it did but was about to request the doc up my pain killers when I remembered I'd run out a few weeks previously. Completely forgotten about it so don't think it was placebo!

But I agree, you need to see the doc and not self diagnose. It might be something that can be fixed if caught early and a referral to Physio is a good starting point if it ius HMS. Good luck!

I wasn't suggesting you have RA, merely pointing out that your symptoms in my friend were RA not hypermobility (though interestingly DH's arthritis wasn't shown on x-ray but did show up on an MRI). You need to see a GP and ask for some referrals. DD saw a physio and orthotist first and then a biomechanic dude.

DD is massively inflexible in some joints and hypermobile up the wazoo in others. Her hypermobility affects her bowels, sleep, anxiety levels and causes reflux too.

OP, it may be worth investigating joint hypermobility sydrome but things like RA won't show on a standard x-ray. I'm sorry you're in pain, if it's ongoing it is a good idea to go back to the GP.

PP who mentioned adrenaline problems, adrenaline rush is a major symptom of POTS as it is the response mechanism of the autonomic nervous system.

EDS is currently diagnosed far too often as recently anyone with hypermobility has been given an EDS-3 diagnosis. Misdiagnosis has actually become such a problem that the diagnostic criteria have been redrawn to ensure people with other conditions where hypermobility is a symptom aren't given EDS label incorrectly.
Hypermobility is one symptom of EDS but it is a complex condition which also causes many other issues.

Ds3 (15) is hypermobile a long with other disabilities.
He is so bendy and flexible. I have however told his school he cannot do cross country, he ends up in so much pain.

I have HM (and mild CP). It was more pronounced in childhood but much less so from my twenties.

I wear swan neck splints and suspect I have the beginnings of arthritis in affected hand.

I'm hypermobile. I dislocate my knee caps a lot, I damaged the ligament that holds your knee cap in so badly I had it replaced (best thing I ever did but recovery is long).
I get back problems and had SPD during pregnancy (luckily if you're hypermobile labour is often shorter but you are more likely to bled).
I've always been flat footed and one foot has started to twist and drop.
Things that help with my pain are gentle exercise preferably nothing jarring, although I have found some of Joe wicks HIT sessions are good, some.i wouldn't do as I know I haven't got the core/ muscle tone to protect my joints. You really need to be stronger and fitter than other people to make sure your joints are protected.
I wear decent shoes with arch support and lace up

Oh no I'm flat footed too. Do you mean my DM was right about making me wear those sensible brown horrible flat lace ups as a child instead of the trendy patent sandal wedges I was hankering after?

I have it. It’s caused no end of problems and I have POTS along with it which can be developed as a sub disorder. My knees regularly dislocate along with my wrists which are less frequent. It makes it hard to hold down a job or stay on feet a long time

Dd was diagnosed 5 years ago after constant accidents, sprained joints, pain, unexplained bruising, which then worsened and finally a locum dr referred us to orthopaedic dept. Specialist was fairly sure after a brief look at dd and having seen her notes but went through testing criteria which only confirmed.

She is flat footed, pronates, has orthotics for ankles and knees, physio she has to do daily which is reviewed 6 monthly.

I am an ex nurse but admit I knew little of this condition, I went online to find out more and it's shocking how much it affects (and how much basic anatomy I've forgotten )

It also affects dds stomach, heart (palpitations), gums, eyes and ears.

She hates the orthotics as they can't be hidden well and as a 16 yr old girl is quite self conscious but specialist put her straight 'it's either those or you'll likely be in a wheelchair by age 40' which I was thankful for her saying as dd wasn't listening to me.

Me and my dd (2 years old have hypermobile joints)
I was diagnosed at 15 after repeatedly tearing ligaments physio asked me to do some things and said i had it. She worked with me to make my ankles more stable. I will never be able to wear heals or play sports without a support. I do get hip pain alot in the colder weather im 25 now.

My daughter was diagnosed by her orthopeadic paedation shes been seeing as she had a limp.

Check out hypermobility.org.

I have eds. Stay the hell away from snake oil cures but real physio (done relgiously), hydrotherapy, rehab pilates and carefull weight training combined with pain clinic and alot of drugs keep me on my feet.

I have hyper mobility and rheumatoid arthritis . I've just turned 43 and notice that my knees dislocate a lot now. Very painful!
My ds who is 11 he has mild hyper mobility we both walk on our toes I don't know if that's a common trait or not

I used to walk on my toes teabag and my ds 2 who is 16 also does. He is not hypermobile as far as I know, neither am I.
Although i’ll check the website mentioned above.

My self esteem has just bobbed up a bit. I always just thought I was a weak-ankled, flat footed, pronating, cold, anxious girl who constantly needed the loo

I'm now looking at my ME/CFS and POTS symptoms in a new light. I thought I was falling apart!

There are new criteria which makes it a little easier for HCPs to diagnose hypermobility spectrum versus EDS 3 (EDS hypermobility type). The criteria for EDS involve a lot more than just bendiness.

I was diagnosed at the Royal National Orthopaedic Hospital (its a rheumatologist that diagnoses it).

I was diagnosed at a local hospital as having the classic type but the consultant at the RNOH disagreed and said it was type 3.

My symptoms are: exhaustion, burning pain in muscles when exercising, partially dislocating hip, shoulder, knee, ankle and thumbs, baby soft doughy skin, slow healing, fragile skin that cuts and bruises seemingly with no trauma sometimes, hard little lumps under elbow joints, round fatty lumps on heels and up sides of feet, inability to control temperature (either freezing or dripping with sweat with minor changes of temp), insomnia, osteopaenia, high arched palate and overcrowded teeth, intolerance to local anaesthetic, slow, sluggish bowels and constipation . It’s a real mixture of weird and wonderful things that were never put together till recently. I’m I. Mid 50s. Have been misdiagnosed over the years with fibromyalgia. It’s only that DDs nearest hospital was the RNO and her problems were picked up, that I was eventually diagnosed, I’ve felt like a total fraud since I was small with the way I feel. I used to ask to go to bed as a small child and my DM used to try persuade me to stay up a bit longer. That is so not usual.

Oh and skychaser has reminded me about ankle and wrist sprains and tendinitis with a little overuse. Not sure how I forgot as I sit here typing this with a wrist brace on after failing to go out for a walk as ankle being a git again.

yes me too.

Not been diagnosed by the GP, because my symptoms are more tight muscles rather than dislocations, so there's not a lot they can do and it won't look obvious to a non-expert, espeically compared with people who really do sublux a lot or have very obviously hypermobile joints - mine are more mild, but many of them. The physios that I've seen on the NHS don't seem very clued up about it, and there didn't seem to be much point making it an official diagnosis.

But it did explain loads of things - whether it's EDS or just hypermobile syndrome doesn't really matter. It explains tons of things for me, like the fragile skin, bumps on my heel, temperature control, poor balance, tiredness, intolerance to local anaethetic, etc etc)

I saw a private physio at the hypermobility clinic at hospital of St John's and St Elizabeth, and that helped - one of the physios there that I saw wrote one of the very respected textbooks on the subject. It cost a fortune though and I couldn't go often enough. She's now retired, too, but there are others there.

They also referred me to a podiatrist for insoles, and she specialises in hypermobile patients as well, and that has made a difference (again London - I travel for a bit to go, but worth it!).

And I saw a specific hypermobile-specialist hand therapist for pain and difficulties with musical instruments etc, which helped much more than anything else that I'd tried for that. She was even more expensive though, so had to limit visits, but if I could afford it, I'd go back to her straight away. (also central London).

If you have insurance, the experts can really make a difference, instead of trying lots of people that don't end up helping (my NHS experience).

I've seen specilist rhumatology physios on the nhs, in two very different areas so it's worth looking into. The private physio i saw on the otherhand missed my hypermobility alotogether.

I have hypermobility Eds and have had some symptoms from quite an early age but they escalated at about your age this coincided with the perimenopause.It was only diagnosed several years later by a rheumatologist years later. Things that have helped me have been fish oil, turmeric,continuing hrt and seeing a good specialist for it when the doctor wanted me to stop takIng it. I used to go to a physio but found a good personal trainer who helped me to create more stability in my body and could do the occasional massage. I did 30minutes twice a week which was perfect as an more than that was too tiring.
I have always have less stamina than other people I have read that this is caused by having faulty collagen which means our bodies are not as stable as they should be,so that we have to use more energy than others to move etc.I totally identify with itsanicehotel with the fraud feeling, even now that I know what it is I still suffer from depression sometimes because I can’t keep up with others but I am grateful to have found the things that help,( sometimes just accepting it and resting), I am also aware that compared to some others I have had a easy time with it as some are constantly dislocating and have much more pain and disability. There are forums online that might help eg.
www.ehlers-danlos.org/what-is-eds/

You might find this useful:- www.ehlers-danlos.org/what-is-eds/

I’m hypermobile, mainly affecting my fingers, wrists, feet and ankles. My knees both bend backwards too.

I’m in discomfort across both hands in winter and regularly sprain ankles, tendons in my feet etc. It’s not awful, but I’m constantly aware of those joints.

DS is also hypermobile and has had physio to strengthen his muscles and ligaments. His problem is across his hands and up to his shoulders.

Overcrowded teeth, fast labour, overactive bladder, twisted ankles, weak skinny wrists, dodgy hips, painful shoulders, IBS, out of control nervous adrenaline..... it's all coming together.

Sorry to everyone & their DC struggling with the pain and severity of this. I don't think I know anyone in RL with it. I'm now playing symptom bingo to see whether there's been a misdiagnosis here. Is it out of the frying pan and into the fire I wonder?....

I'm hypermobile.... Not as bad as others have described, but hips displace regularly, ankles go over all the time and am dead clumsy. A Bowen therapist is your friend, helping realign etc without bone crunching; look one up. Total life saver

I found out I was hypermobile some time after pregnancy number 1 left me bed and wheelchair bound until a few weeks after my son was born. My pelvis was grinding and it was awful. If you get pregnant, get specialist help. Still suffering six years later.

I have HMS too and was diagnosed at 18, though I didn't really get any help, just a list of 'don't's. Careful core and weight training has really helped as has getting plenty rest. I can't wear heels, my hips still sublux, I turn my ankles regularly and I am clumsy as hell, I also need a ton of local anaesthetic at the dentist. It was a relief to find out these symptoms were part of the syndrome and not me just being feeble.

My 3 children and I all have EDS, I also have a working diagnosis of RA/Lupus and fibromyalgia. I'm being investigated for POTS too. I have a score of 6, but would be higher but my worst joints aren't included in the Beighton scale. It's fucking awful, truth be told.