Is there a thread for adults with hypermobile joints/hypermobility?

[NishiNoUsagi]

Hello

Is there anybody else out there suffering with hypermobile joints/hypermobility? It seems to run in our family, and since my 2nd pregnancy I've been noticing it a lot more. Mainly dodgy knees, feet have flattened, wrists also bad lately. I don't know whether pregnancy has made it worse somehow, or whether it's just the physical side of looking after two kids (3 & 1 and a half) but I'm finding it quite tough. It's not bad to the point where I can't walk or function thankfully, but it's like pain/ache if I've overdone things, and knees and wrists seem to twist and stretch, pop out of place (not dislocate but kind of feel out of place, hope that makes sense!)

Is there a thread around that I can join and grumble on? I did a search but just found lots of threads about children with hypermobility (heartbreaking to read..) Thanks for any advice!

Does anyone else have a DP/DH who just doesn't "get it"? I feel very alone. He has a manual job so thinks he has the premium on feeling shit and tired at the end of the day. Of course he does. But so do I.

But he doesn't understand that that's how I feel after a day looking after DH as I'm a SAHM right now. My hip (sacro iliac joint) is constantly subluxed so it's agony to walk, never mind pick up DS and go about all the daily activities which should be normal. I also have early onset arthritis and chronic pain in my hands but apparently it's nothing compared to his job.

What can I say? I have no treatment from the GP either apart from "just get on with it" as they can't do anything.

That sounds rubbish, Larval. I'm single, and there are other problems relating to that, but at least there's not the daily stress of being disappointed that my partner doesn't understand... Could you get him to read this thread?

Thanks for the link angeltulips

Larval Luckily my DH gets it, possibly as I complain about it so much! It is so tough if they don't understand though, and he does sound like he's being an arse about it.

Sorry to starting this thread then disappearing for a few days, and thanks to everyone who's joined. I've had a really bad few days with it, esp arms/wrists/shoulders which is unusual as it's usually my knees. Had to cancel a day out with the kids as I would have had to push the buggy (with Ds1 on the buggy board when he got tired) and I could barely pick up Ds2, let alone deal with that. So spent the day at home feeling guilty and shit instead.

Feeling a bit better today but fed up of overstretching something or popping something out of place every time I move. Feel angry with myself as every time I change a nappy I end up getting snappy with Ds2 as he tries to run/roll away and having to catch him and wrestle him into a nappy gets really painful. I get snappy with Ds1 as he always pulls my fingers/hands to get me to go somewhere, leaving me with a finger/wrist popped out of place. I just want to be able to look after my kids without it hurting, it makes me really sad.

Sorry for the waffly rant. How's everybody doing today?

I've had a particularly bad few days as well. I know a couple of other hypermobile people who seem to be suffering more too. I wonder why?

The physio explained something to me yesterday that I've never understood before and found useful and interesting... I have lost a lot of muscle tone because I've been scared of my joints giving way and popping out of place and hurting, and I have effectively cut down on moving. Everything hurts.

Muscles, she explained, don't just help everything move, but also act as 'shock absorbers'. So the less muscle you have, the more shock/impact your joints experience, because they aren't properly protected. That explains why I have experienced more pain as I have become less fit: it's not just that movement is harder cos my muscles are weaker, but also that my joints are effectively getting more battered. :(

At least I can do something about it, but I wish I'd understood that decades ago.

Me too! ( crap days wise)
do we stretch in the heat ?
Or possibly I've just overdone it with it being half term/dh at work more/actually doing things

flow interesting
I wish all the Physio/dr I saw between dd2/3 had explained or actually realised that the separation of my stomach muscles coupled with the extreme stretch marks meant another pregnancy would wreck my pelvis due to lack of support for it or even told me before I got pg with ds

Anyone on here got pots or vasovagal syndrome and hypermobility? I've just been prescribed midrodine to raise my bp as I've got low bp, I've not taken any yet, and feeling slightly anxious about doing so for some reason. When I was mid-pregnancy, my bp was higher and I felt loads better, so hoping for a similar effect! Anyone take it or had low bp with HMS? I've been referred to the EDS/HMS clinic for further investigations. I do worry, as I am hypermobile too, and do get low back pain and left hip ache almost all the time....

DD2 (POTS/EDS) has just started midodrine (after dumping metoprolol as it was making her hair fall out ). Going well so far (3 days in), the prickly goosebumps on her head she says are weird, but that apparently will wear off. Last dose needs to be four hours before bed, and it can help to raise the head of the bed (that's advised for POTS in any case) which is OK if it's just you, but not so easy if you share a bed .

Biggest issue with midodrine for DD is going to be the fact you can't get a repeat prescription from the GP, it has to be from a consultant/hospital pharmacy, which means that the usual NHS delays in getting appointment times out may cause some stress as supplies run down.

Hello
Was diagnosed with hms many years ago, also have IBS ( very badly) was told by consultant they were linked.
Also have hiatus hernia, again linked apparently
I have spent years strengthening my body to protect my joints...It is a pain...literally
Plenty of party tricks though

Hi all. I've been away for the weekend so missed out on a lot if this but hello to all the new joiners to the thread.

Interesting that some people have had a flare up of symptoms recently because so have I. I actually wondered whether it was since being on this thread , you know because maybe I do a good job of ignoring it all and then if I'm reminded of it, I feel the symptoms I've been surpressing.

I don't know. I was also in the days leading up to my period so I also put it down to that (hormones?).

It's strange how (for some of us) these things wax and wane isn't it?

I'm seriously considering orthotics for my shoes since I've only been using an instep to raise my arches and a few people have mentioned getting them made to fit (and someone else mentioned arthritis through not wearing them).

Where do you get this done?

I've got Orthotics (as has my 15 yr old hypermobile DS), specifically made up for me by a biomechanical Podiatrist (on the NHS) I actually can't put weight on my feet without them anymore, as i've developed fluid on my ankle joint where i've gone over on it so often, so they're a godsend Findus
I'm nearly 50 and i have to say IME things get worse with age, so i'd recommend them. Especially if you can get a heel cup, as this helps to keep your heels placed where they should be iyswim.

My podiatrist told me that thread veins on your feet, vericose veins and LBP are very common in people with Hypermobility, anyone else found this?

Oh sorry Findus forgot to say, Orthotics can by acquired by going to see your GP and getting a referral to the podiatrist.

Jelly, that's interesting... I have LBP, a couple of varicose veins and thread veins on my ankles/feet... I got the last two around the time my joints began to cause me real pain...

I got my orthotics the same way, and yes, it's also my experience things get worse with age. OK, so my joints aren't so mobile - they're getting stiff - but the pain is much worse, and so it the clicking and 'seizing up'.

I've made an appointment to see my GP on Thurs to ask for a referral to the rheumatologist. There's talk of a hip replacement for me because of the arthritis; but I came across something that said surgery isn't recommended for hypermobile joints... Also, my physio said my joints couldn't actually be dislocating, but the DWP guidances says very clearly that hypermobile joints can... So it seems really important to get a consultant's 'proper' diagnosis.

And (just wondering) does anyone get DLA/PIP because of their HMS?

I don't get DLA but was helping someone who had EDS do a claim and it was difficult due to the ups & downs ( some days she couldn't walk & others she could wander round Asda.

I'm interested to know about being disabled from a work POV. I need adjustments to return (work should be ok in theory but its hassle for them) and everything I've read said disabled = 2years plus. The point I became limited was July 2010 but that was SPD which then triggered everything else. My walking has varied during that period too and includes 2 pregnancies so I'm not sure about the continuity bit. I don't have a diagnosis.
Am looking for another job ( due to my walking) and can guarantee an interview if I say I'm disabled but I'm not sure I am especially at this point when I'm still supposed to be improving( from pregnancy). Job won't start until Sept so could feel like a fraud if I'm a lot better by then

Re applying for a job, you have a condition which is covered by the disability discrimination act, so by all means tick that box on the form. doesn't mean that you're in a wheelchair, or even that you have problems every day - just means that you may need allowances made to enable you to stay at work (decent chair, no lifting or whatever).

Even without a diagnosis?

I imagine it could be hard to argue without a diagnosis. But look at this... It says "Impairment is not specifically defined in the Act - but case law suggests that a formal medical diagnosis is not always necessary, provided that it is clear that functions are impaired"... It does go on to add various cautions...

Thanks.

Thanks for all the information.

Another thing to ask you experienced hypermobileys, in addition to the clicking etc, do you also get tingling in hands and/or feet? And additionally, is the tingling sometimes accompanied by your fingers going into a funny position (eg thumb across palm, fingers a bit immobile and hard to move) and wiggling a little bit as mine have started doing sometimes (eg today's episode started about 2 hours ago and typing right now is tricky).

I hope someone comes along to confirm this is absolutely normal for us hypermobile types.

PS jelly thanks for the information. I'll talk to my GP for a referral.

Myth

Oops, oh dear I did this at the start. Must be more careful when typing on phone!

I was trying to add, to clarify my other post, that my thumb is currently wedged across my palm!

I'd take that one to a rheumatologist Findus - probably a dislocation with trapped nerves, but you need to make sure its not something else.

Do you think so, Dame? Just got in from work and DH says it seems like cramp. Stretching hand out has improved fingers but everything's still very tingly and my thumb is still in an odd position.

I have just got a referral from my GP to see a consultant rheumatologist. Can anyone recommend a good one specialising in HMS, who is somewhere around Leeds/Bradford/Sheffield/Huddersfield/Oldham? Thanks!