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

(101 Posts)
MrsOverTheRoad Wed 25-Oct-17 11:00:39

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.

minimonkey11 Wed 25-Oct-17 11:11:36

No expert but i have 2 friends with EDS - which is a form of hyper mobility- lots of info online. One friend suffers badly and uses a wheelchair and the other has a new lease of life thanks to a load of products from an MLM company! So make of that what you will- best thing to do is some research and then perhaps contact people with similar situations- then go to GP? Sorry not much help x

theymademejoin Wed 25-Oct-17 11:17:19

My 3 dc have this to varying degrees, with dd being about as hypermobile as it's possible to be. She has had problems with various joints. She had to give up one of her sports as she had too much pain in her knees.

She also had problems with subluxating (partial dislocation) shoulder and collar bone. What really helped with that was a very good physio who worked on her core muscles with her. She really strengthened the core and those problems disappeared, although she still has problems with her knees if she is standing too long. She tried physio for that but, while it helped, it wasn't as successful as the core strengthening.

MrsOverTheRoad Wed 25-Oct-17 11:20:22

Thank you both. I think I need to see the GP then...it's really starting to be a bit unbearable. I've always been uncoordinated but that could be unrelated.

ShowOfHands Wed 25-Oct-17 11:20:35

Go to GP. I can touch the floor, hands meet at the back as you describe etc and I am not hypermobile. DD is (likely eds) and can't do any of it. It's not that simple.

A friend for example has all your symptoms and it's RA, not hypermobility.

mindutopia Wed 25-Oct-17 11:21:23

Yes, I'm hypermobile. There are some screening tests you can do online that will give you an idea. You're also likely to be hypermobile in some joints but maybe not all (this are usually the ones that bother you the most). For me, it involves joint pain on occasion, though I do my best to manage it well. Exercise and stretching helps a lot. I also have a few problem areas, back and pelvis especially, and I see an osteopath a few times a year for an adjustment and some soft tissue work. Proper sports/therapeutic massage helps too. There is no cure, it's just how your connective tissue is and you were born like that. But you can take better care of it to make sure you're comfortable.

LancashireTea Wed 25-Oct-17 11:25:29

I am hypermobile, diagnosed at 18ish. My knees dislocate quite a bit and my joints ache if I'm still for too long, especially when I'm cold (I also suffer badly from Raynaud's).

I also have a problem with adrenaline, so struggle relaxing and sleeping. Some doctors thing the two issues are related.

MrsOverTheRoad Wed 25-Oct-17 11:29:28

Show I did have an x ray...wouldn't that have shown up RA? They told me there was no arthiritis.

sanityisamyth Wed 25-Oct-17 11:32:32

I’m hypermobile. They did the official tests and said I’m not in the common areas (thumbs and fingers bending back and elbows) but my shoulders, knees and hips dislocate really easily. I’ve just had stabilisation surgery on both knees but still managed to dislocate one knee last week. Worrying!!

There’s no hard and fast rule with it really. See a GP for a physio and ortho referral who should be able to tell you more!

Good luck!

RunningOutOfCharge Wed 25-Oct-17 11:33:45

I’m not but you have my sympathy. This must be so difficult to live with

MrsOverTheRoad Wed 25-Oct-17 11:35:17

Thanks everyone....it's definitley getting me down whatever it is. I do think there's something wrong. 45 isn't exactly OLD and I've been in pain for a while now. I thought it was normal till I began limping full time.

RacingRaccoons Wed 25-Oct-17 11:35:34

I have Ehlers Danlos Syndrome Type 3. My joints are incredibly hypermobile (after the birth of my son, I had both my shoulders pinned, I constantly wear a hip support belt and have specialised insoles to correct my walking).
I also suffer very badly with carpal tunnel syndrome, sciatica and Raynaud’s Syndrome : all are linked with EDS.
I was diagnosed at 12. I am now 20 and literally live on steroid injections and painkillers.

RacingRaccoons Wed 25-Oct-17 11:36:40

I also see a physiotherapist fortnightly!

MissWeakAnkles Wed 25-Oct-17 12:14:21

Ooh thanks for starting this @MrsOverTheRoad <waves back from other side of the road with weak ankles> grin

I've just had another MN light-bulb moment smile

Reading all this and working backwards myself. I have severe ME/CFS, now housebound. Wheelchair. In midst of POTS diagnosis.

In the last month, I realised I score 4 on the Beighton Score and have many other symptoms present.

hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

I have always had 'weak ankles' and was always twisting my ankle as a child (actually still have as an adult too!) and always have cold feet and hands.

And @LancashireTea, I have MASSIVE problems with adrenaline to the extent where everything I do triggers adrenaline, arrrgh confused How do you cope with it?!!

So sorry to hear about people's struggles here. But thank you for sharing flowers

This article is VERY interesting. www.dynainc.org/docs/hypermobility.pdf

I guess I need to contact my GP again. She's going to think I'm a right hypochondriac smile

MrsOverTheRoad Wed 25-Oct-17 12:16:21

Hello MissWeakAnkles grin

I should be MrsWeakAnkles as I'm always going over on mine too!

Thanks for the link...I'll check it now!

StormTreader Wed 25-Oct-17 12:21:24

I know 4 people with diagnosed EDS, its really not as rare as its made out to be.
If you think you do have it then its worth getting diagnosed as a lot of other things like POTS, gastro issues etc tend to go along with it and should be checked for.

Something you can look into which apparently can really help some EDS people is Pilates as it strengthens core muscles without too much stretching, look for an instructor with experience of teaching hypermobile people as you'll tend to want to try and stretch/extend more than you actually should - the adrenaline surges mentioned above is also a common EDS thing as your body is constantly "on edge" trying to catch yourself. Yoga is really not recommended as it focuses on increasing mobility in joints that are already too mobile.

MadameJosephine Wed 25-Oct-17 12:26:40

I have EDS, I have suffered with joint pain on and off all my life but was only diagnosed after my DD when she was 2. I had terrible trouble with pain my feet and knees earlier this year and had x rays to rule out arthritis but what really helped was when I was diagnosed as perimenopasal because of other symptoms (flushes, palpitations, brain fog, depression) and started on HRT. I’m 46 so around the same age as you

MissWeakAnkles Wed 25-Oct-17 12:27:31

Mmm interesting StormTreader.

I started to feel much better when I was doing Pilates (in a class) and simple yoga at home. Can't do anything now due to PEM (Post Exertional Malaise) which is a core symptom of ME. So, stuck between a rock and a hard place smile.

So what Specialist deals with EDS & other hypermobility?

<rubs hands with glee at the thought of visiting yet another department> hmm

MissWeakAnkles Wed 25-Oct-17 12:28:53

Yeh, I'm not far behind some of you in the 40's category either.

I thought life was supposed to begin at 40 grin

Birdsgottafly Wed 25-Oct-17 12:37:46

" I did have an x ray...wouldn't that have shown up RA? They told me there was no arthiritis."

I know people who've been diagnosed through bloods.

You need to go back to your GP and insist on investigations, the sooner it's caught the better.

Don't assume that it is HM.

My DD has had it from birth and suffers joint pain. It gets worse if she overexerts herself. She has to be strict about adequate rest/sleep. She has stomach upsets, as well, if she is overtired, which brings on migraines.

She was referred from the Children's Hospital to physiotherapy and the Rheumatism clinic, on becoming an Adult.

gingerscot Wed 25-Oct-17 12:42:57

I can do all the things you can, have some hypermobile joints and exercise helps more than anything - core strength as someone else said. Maybe try swimming if you're not up for a Bodyattack class?

sparechange Wed 25-Oct-17 12:56:09

I was diagnosed as hypermobile as a child and have had various back and joint issues.

I avoid yoga like the plague, but do lots of pilates (including once a week with a physio)
I have to ask the dentist for extra anesthetic because a normal dose isn't enough for me
I have to be very aware of my posture when I'm at my desk - my mouse is very close to the edge of my desk so I avoid stretching my arm out, and my chair is adjusted properly so I sit upright without crossing my legs

JustKeepDancing Wed 25-Oct-17 12:59:09

Yup, I've got it. I was born with hip dysplasia but I was only diagnosed with Joint Hypermobile Syndrome in my twenties after my GP referred me with suspected MS (lots of falls, carpal tunnel, and Raynauds) and to be honest nothing changed after that other than my being more physically aware and having a lot more "oh yes..." moments. For example - pretty much every time I have joint pain or fall over (my proprioception is awful, which is often related), I'm on my period or I've not slept well. The hormones and being tired definitely affects me physically.

It's probably worth pointing out that, according to the research I've read, hypermobile joints are pretty common - about 1 in 5 according to the NHS - but the pain, POTS, and other symptoms are less common and I suspect a lot of people like me pass things off as growing pains or lack of exercise.

I saw a private physio who taught me lots of balance exercises which helped, and a podiatrist, who gave me specific orthotic inserts for my feet as my ankles rolled in and caused pain up my legs and into my knees.

Agree with others that it's always worth getting checked out by a GP. It could be various other things.

Does the pain move from joint to joint and there is no warning? Maybe worth looking up palindromic rheumatoid. It’s not very well known (even by some drs/rhumstologist). It won’t really show up in blood work and doesn’t damage the joints so won’t show on an x-ray. My best friend has it and it really does vary from day to day as to what she can/can’t do

MrsOverTheRoad Wed 25-Oct-17 13:15:54

Peppa not really. I had one bad foot/ankle but now I've got two...they're both always bad...sometimes worse but they always hurt.

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