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Possible hypermobility???

(32 Posts)
BeyondTheLimitsOfAcceptability Thu 22-Aug-13 19:10:18

Here are a load of pictures of me grin
As I've written there, I've seen the doctor waaay too much this year already, so want a few opinions before I go about this!

I have been diagnosed with psoriatic arthritis already, so am under the care of a rheumatologist already. The first time she saw me, she suggested I may be hypermobile due to her noticing I had a particularly bendy neck.

I then pretty much forgot about it until my DS1 complained of pain that sounded familiar to me as the growing pains I had really badly as a child. So I went to Dr Google and ended up at hypermobility again.

This time I looked into it a bit more, and noticed a long list of things that were relevant.
- possible postural orthostatic tachycardia syndrom. Since I was a teenager, I have been investigated for random fainting, no cause found.
- my hip and shoulder both click out of place, not quite dislocating fully, but definitely out of normal position
- I have stretchy skin (might try to upload some pictures of that too...)
- I am very pale, skin can look almost see through, and I bruise very easily
- I am short sighted (hardly rare, but its on the list)
- I had two quick labours, 4 hours and 3.5 hours
- I had a inguinal hernia as a toddler, and now have a rectocele

So, apart from hypochondria, what do you think? smile

Hadmeathello Thu 22-Aug-13 19:17:29

Hi, I'm not an expert but DD1 has hypermobility. She does the random fainting thing too. Another possibility is Ehlers Danlos syndrome. I can't really tell from your pics but didn't want to leave you unanswered.

LEMisdisappointed Thu 22-Aug-13 19:18:33

Well this is a question i have asked re my DD as that thing you did with your arm in your pic is nothing compared to how she does it! Maybe i need to mention it to the doctor.

LEMisdisappointed Thu 22-Aug-13 19:19:35

urgghh, she can do that thing with the fingers too - marking place!

ridiculoussingle Thu 22-Aug-13 19:24:48

I think tge general tests for hypermobility include being able to put hands on the floor from standing, bending fingers back 90 degrees, bending joints backwards (I can lift my feet off the floor while sitting with legs outstretched in front of me). I'll see if I can find a link...

ridiculoussingle Thu 22-Aug-13 19:25:11

I think tge general tests for hypermobility include being able to put hands on the floor from standing, bending fingers back 90 degrees, bending joints backwards (I can lift my feet off the floor while sitting with legs outstretched in front of me). I'll see if I can find a link...

mrsharrystyles Thu 22-Aug-13 19:26:24

Your arms are just like mine. I have hypermobility syndrome and psoriatic arthritis.

ridiculoussingle Thu 22-Aug-13 19:29:42

Sorry for crap link. Its The Beighton score for hypermobility.

Hadmeathello Thu 22-Aug-13 19:30:26

DDcan bend her knees the wrong way iykwim.

Hadmeathello Thu 22-Aug-13 19:33:16

She can also bend her thumbs right back so that they touch her arms.

BeyondTheLimitsOfAcceptability Thu 22-Aug-13 19:34:10

I've looked at the Beighton score, the pictures didnt look particularly weird to me though!

The pictures of my joints aren't exactly at its fullest, my arthritis is quite bad at the moment and I'm rather stiff.

I used to dance, I didnt realise I was particularly flexible, which is what I said when the consultant mentioned it. But seeing the other things that are relevant shocked me!

BeyondTheLimitsOfAcceptability Thu 22-Aug-13 19:36:08

My thumbs can touch my arms usually, they're just a bit swollen at the mo, as are my wrists.

I never realised my fingers were weird, I looked at the Beighton pics and thought, "but everyone can do that?!"

I can turn my little finger 45' so it is sideways too grin

LEMisdisappointed Thu 22-Aug-13 19:36:09

ridiculous, i dont think i am hypermobile but i have always been pretty flexible and can, at a size 20 put my hands flat on the floor without bending my knees or having my legs parted. DD can bend her arms the wrong way, it totally freaks me out - i think i should maybe mention this to doctor then.

BeyondTheLimitsOfAcceptability Thu 22-Aug-13 19:38:21

LEM, I think it could be genetic, so it would be quite probable that you had it if DD does?

BeyondTheLimitsOfAcceptability Thu 22-Aug-13 19:39:28

I had a friend in school who could get her elbow practically 90' the wrong way, hence why I'd never thought my slightly bendy elbows were weird grin

LEMisdisappointed Thu 22-Aug-13 19:40:12

According to the table DD doesn't fit the criteria, its just her elbows really. Interesting thread, thanks

ridiculoussingle Thu 22-Aug-13 19:44:12

Know what you mean about it being 'normal'. I was pit onto it by a medical friend recently & it was a revelation. I thought everyone could bend tgeir knees backwards! I score 6/9.

DisappointedHorse Thu 22-Aug-13 19:46:39

I have hypermobility and can do all the things you can, except my legs which are strangely unbendy! I have tight hamstrings and can't do the lotus position.

From your list, the only thing which I also have is very pale, easily bruising skin. Do your elbows meet easily at the back if someone pushes them together?

I thought everyone could do weird things with their fingers growing up then it became a party trick! I only discovered it when a physio told me; who I was seeing for bad back pain which is a symptom apparently.

Grumblelion Thu 22-Aug-13 19:51:44

Sounds (and looks!) like you could definitely have a hypermobility syndrome. The fainting thing I have seen in a couple of people with the condition. Another random thing hypermobile people sometimes report is anaesthesia being less effective eg at the dentist - don't know if you've had that too?

There is a strong genetic link for hypermobility. There are rheumatologists who specialise in hypermobility so you could ask to be referred. I'm in London and know there's one at UCLH but don't know if that's any good for you?

BeyondTheLimitsOfAcceptability Thu 22-Aug-13 20:07:19

I've not tried, disappointed , that may be somethng to test when DH gets in from work grin

I've only had a filling with local anesthetic once, and yes, I had to have the injection twice as it didnt work! My old dentist never used it for fillings before he retired shock

I'm in south wales. Do I go to see my GP or should I just make an appt with my rheum?

My mum is quite bendy, I'll see what she makes of this smile

BeyondTheLimitsOfAcceptability Thu 22-Aug-13 20:33:51

The NHS site also points out weird bumps under the skin of your heels called piezogenic papules. Yep, I have them too!

ridiculoussingle Thu 22-Aug-13 21:43:15

Anaesthesia is interesting, I always need 2 shots at the dentist. I always assumed they were being tight, 1 shot does nothing.

Grumblelion Fri 23-Aug-13 09:04:56

Probably see your rheumatologist about it and discuss whether a more specialist referral is needed. It might not be for managing the joint problems - probably worth getting a physio referral for that for help to set up a long term management plan & to give you advice about strengthening and joint care. Possibly also worth getting one for your DS. It's really commonly seen and useful for parents and kids to know what can help and if anything should be avoided - like the bendy party tricks all kids love to show their friends ;)

Your own rheumatologist may be able to manage any other symptoms but often there will be one who has a special interest in hypermobility who might be able to reassure you about specific things. There's also loads of great support groups online.

MissAntithetic Fri 23-Aug-13 09:21:52

Watching with interest.
I got diagnosed at 28 (now 30) and nobody could tell me much.

But I read an interesting paper which apart from the constant pain I have in my knees hips and wrists (hip and shoulders also click out daily)
I had a lot of other symptoms I has never connected with hms
Constant headaches, painful sex, digestive problems, amongst others.
It really was an eye opener.

They told me I had it quite badly and most likely now have arthritis in all my affected joints.

But that's it. I had physio were they put me in the knee replacement clinic and they didn't know what to do with me.

Tbh it really gets me down. Every day I'm in pain and its got much worse over the last 6 months which I put down to childbirth and bf for the last 11 months.

Nobody round this way seems to know anything about it.

Grumblelion Fri 23-Aug-13 10:30:51 is one of the better websites I've come across for info & support.

MissAnti sorry to hear you haven't had much support. Unfortunately often physio treatment is home exercise to manage the extra mobility & pacing activity/postural advice - almost impossible with little ones! Have you tried pool-based exercise, that can be quite nice or even just taking the children to the pool and being in the water with them? Another option might be referral to a pain management clinic or program for advice about medication and pain management strategies. Or ask for another physio referral and when you go just tell them you want advice/exercises for home for all your joints - then just pick a few different ones to do every day. A basic Pilates class for core strengthening might help too but go for a small one where the instructor can spend enough one to one time with you getting the levels right.

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