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!

I saw a good one in Leeds (up near Chapeltown) with an Italian-sounding name. He's the one I'm aiming to go back to whenever I need more care because he was good. However I've forgotten his name! I'll try to find out and come back on with a more concrete answer!

Thanks Findus, I'd appreciate it. :) Apparently our local district hospital isn't very good, and they have two vacant rheum consultants posts vacant at the mo, so I need to go further afield... If I'm travelling, I might as well find someone worth travelling for!

Can I ask if any of you trip over your feet?
Not sure how to explain, this is the closest, my ankle just goes to one side and my foot goes wrong.
I keep doing it and it drives me bonkers.
Six, seven, eight times a day.
Worse with some shoes, but I've done it in anything from flip-flops to boots.
Highly embarrassing.

I used to, but arch supports/orthorics in my shoes seem to have stopped it.

Similar question to coffee, can I ask if any of you fall over frequently?

I am terrible for tripping over. I'm just walking along quite happily and then I find myself on the floor. I think my ankles give way. I have scraped my knees quite a few times, ruined some perfectly good trousers and embarrassed myself. I'm quite sure some people must think I have been drinking .

Findus I sometimes get that with my toes, but it seems to be cramp - must be so painful in your fingers! Definitely worth mentioning to a gp or physio I think.

I also wonder if I've been feeling worse because of this thread But not in a negative way. I think until now I've been labelling myself as lazy, pathetic, weak etc and getting really upset with myself. Hearing other peoples symptoms just brings it home that it's not me being weak, and I'm allowed to feel like this if that makes sense..

I feel like an awful mum as I just can't keep up with the kids. (They're 1 and 3) Nappy changes, clothes changes etc etc, leave me with so much pain in my arms and wrists, pushing the buggy leaves my arms and legs so sore.. I've actually decided to go back to work as despite a long commute and long walk it will be a lot less painful than being a SAHM. The kids will have to be in childcare 7am-5pm 5 days a week. I will miss them so much, and I feel utterly shit about this. But I can't get through a day at home without being in tears from pain at some point. No idea what to do for the best.

Allfurcoat i have really low bp, is that linked?? Wow. Mine got even lower when I was pg, The midwife had a fancy electronic one which declared my blood pressure as "error!" every time They had to break out the old fashioned cuff for me. It's still low,

Madsometimes My mum is hypermobile/EDS and did this a lot I'm not sure exactly why, but it did all seem to be connected. I'll ask her if he ever found out why if you like. (Unless you are my mum, in which case I'll phone you today anyway! )

I get the ankle weirdness thing. Its like I land on the front of my sole, but instead of my foot following through, it sort of goes sideways so the outside of my ankle is pointing towards the ground.... and over I go.

Does anyone else get major cramp issues? Calf muscle divides itself with a big ridge down the middle, but if I try to stretch it out by pulling my foot up, the top of my foot and front shin start to cramp.

Back again, popped my hip out the other night and damn nearly threw up with the pain.

I only have a physiotherapists diagnosis and not an "official" diagnosis. Is it worth getting one, if for nothing else will it make it easier to get my boys taken seriously too. I'm in Manchester, but have private health care too if anyone can point me in the direction of a consultant.

I find it really hard to write of long periods of time, such as exams, which I've just done at uni, with more due at the end of the year. Ds1 also finds it difficult to grip pens/pencils is it likely that's linked too.

Has anyone found their symptoms worse in this hot weather? My feet are swollen up and very painful. My hands ache and I'm so bloody tired.

What is the problem with children am hypermobility?

I had very bad spd and am pretty flexible but never really thought much about it. My 5 year old can bend his thumb and fingers back against his hand. Do I need to get him officially diagnosed do you think? D

I had very bad CFS in my twenties, didnt have a clue it could be related!

Anyone else out there suffering with their hypermobility at the moment? I also have PoTS and have had a flare up in both for the last couple of weeks. My left hip and lbp have really been bad, and I have had about three episodes of feeling lightheaded and faint. Am certain that good old perimenopausal hormones are to blame. I take hrt for oestrogen and mirena for progesterone. I saw my POts nurse today and she says hypermobility is made worse by the mirena as it is a muscle relaxing progesterone (grrrr). So either I ditch the mirena and go back to heavy periods, or I put up with hip and back pain. what a choice!

I am having a particularly bad time too, Allfur. I'm old enough to be peri-menopausal, but have no symptoms of it. I have just moved house though, and had 3 weeks of over-doing it physically...

I'm feeling a bit sorry for myself tbh. I have just had my consultant appointment at Chapel Allerton in Leeds, which confirmed my diagnosis of HMS. However, they basically said there is no cure and no treatment apart from exercise to strengthen the muscles around all the floppy joints... And told me to learn to live with the pain. :( I'm already getting physio, so they discharged me, saying there was nothing more they could offer. I know consultants don't have magic wands, but I had hoped for something more... :(

I'm now following up various contacts to find out about a new pain clinic near me... It all hurts so much it's really getting me down...