Possible hypermobility???

[BeyondTheLimitsOfAcceptability]

Here are a load of pictures of me
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? :)

[BeyondTheLimitsOfAcceptability]

HMS is now official. The important bit for me was not so much what they can do, as I'm already being treated for my arthritis anyway, but that the long list of random problems I have all have a common cause. Feels weird to be happy that I have a new confirmed problem, but hey, here we are

[BeyondTheLimitsOfAcceptability]

Just bumping so I know where the thread is, as my rheumy appt is this week :)

[Allfurcoatandnoknickers]

I'm 47 and just found I'm hypermobile and have Pots. The two commonly go hand in hand and would explain the fainting....

[BeyondTheLimitsOfAcceptability]

Oh my effing god, i just pulled my knee out when i took my boot off! Owowowowowowow!!

(Btw, little catch up - gp said rheum has already put possible hypermobility on my notes, just waiting for rheum appt now)

[cardamomginger]

Yup. Sounds like you are hypermobile.

If it's any consolation, I only realised there was anything 'wrong' after I was diagnosed with multiple birth injuries and the gynaes I saw kept on saying things like 'of course, with your hypermobility....'

When I was growing up, I thought everyone dislocated their hips when they put on their jeans.... Oh well!

[candycoatedwaterdrops]

Hi Beyond I was hypermobile as a child and it was my party trick but I started to get problems in my teens as I did ballet. I was diagnosed with rheumatoid arthritis aged 21 and since then, my joints don't even have normal movement, let alone hypermobile movement. I'd speak to your rheum about it because they specialise in that sort of thing. My rheum said it was useful to know I used to be very hypermobile because then she can see exactly how stiff my joints are and how much movement I've lost. Although hopefully that won't be a worry for you. The hypermobility.org website is great website; very informative and supportive. :)

[flow4]

You sound definitely hypermobile to me... I have just been through a (long) process of getting diagnosed with hypermobility syndrome. Here are a few insights I gained along the way...

There's a difference between 'hypermobility' and 'hypermobility syndrome'. Lots of people are hyper-mobile and have no problems with it. People with HMS, on the other hand, have or develop other problems - notably joint pain. The NHS use the Brighton Criteria to distinguish HMS from general bendiness.

I spent over a year trying to work out what was wrong, then waited 3 months to see a rheumatologist... Who confirmed the diagnosis, said basically there is no treatment other than exercise, and discharged me. You already have a rheumatologist, so I'd talk to her about your suspicions and (probably) get a confirmed diagnosis, but don't get your hopes up that the diagnosis will actually make much difference.

On the other hand, having a diagnosis could affect the way you live your life and your self-management. I'm almost 50, and if I'd had a diagnosis a couple of decades ago, I could perhaps have avoided some of the early arthritis that now affects me so badly, by changing the type of exercise I did, managing my weight better, wearing arch supports i avoided for so long, wearing better shoes, and - importantly - recognising I had a genuine problem and wasn't just moaning and pathetic!

HMS has all sorts of associated conditions relating to the fact that your soft tissues are generally lax, including low blood pressure, varicose veins, hernia... And depression which is hardly bloody surprising given the rest of it! For me, it explains a lot of other problems I've had, and stops me feeling like a hyperchondriac. :(

Also, HMS (but not simple hypermobility) is associated with some serious health conditions including faulty heart valves, so a diagnonsis means you and doctors can watch out for these.

And importantly, HMS is a genetic condition, so you can watch out for your kids too. My eldest shows signs of it... I now want him to get a diagnosis, so he can self-manage better than I did.

Good luck with it. :)

[Grumblelion]

hypermobility.org 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.

[MissAntithetic]

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]

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.

[ridiculoussingle]

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

[BeyondTheLimitsOfAcceptability]

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

[BeyondTheLimitsOfAcceptability]

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

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

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 :)

[Grumblelion]

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?

[DisappointedHorse]

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.

[ridiculoussingle]

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.

[LEMisdisappointed]

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

[BeyondTheLimitsOfAcceptability]

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

[BeyondTheLimitsOfAcceptability]

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

[LEMisdisappointed]

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]

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

[BeyondTheLimitsOfAcceptability]

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!

[Hadmeathello]

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

[Hadmeathello]

DDcan bend her knees the wrong way iykwim.

[ridiculoussingle]

hypermobilityhope.blogspot.co.uk/p/diagnosis.html?m=1

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