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 have it too. And Fibromyalgia. I am often in a lot of pain in my joints & never know if it is fibro or hypermobility. Either way, the meds don't ease the pain. When I was a teenager, it was fun to freak people out with my bendiness but now it just hurts a lot.

This DWP overview is useful, I think.

it's probably not CFS with hypermobility, more likely to be POTS. A lot of people are getting a CFS diagnosis in error as most doctors haven't heard of it (and CFS is a nice "catch all" for "we don't know, and can't really treat it").

Have a look at POTS UK which also has a section for doctors.

There's still no actual cure (or even proper treatment), but there are things you can do (and medications to try) which can help, and research is being done.

sorry, here's the actual link

I was just about to order more insoles because I only have one pair and some people on this thread have spurred me on to get a second pair so I can make sure I always have some in shoes and slippers.

But others are now talking about "proper" orthotics and I'm wondering if what I wear are still ok. It's something like these:

www.simplyfeet.co.uk/slimflex-insoles.html

I have collapsed arches and one dodgy knee and one side of hip and back of pelvis (and dodgy wrists and fingers but unrelated to arches). But I don't think I'm as bad as others on here who seem debilitated with it.

Am I buying the right things?

I got referred to the rheumatologist last year after listing all the joint problems I'd had over the last 20 years (neck pain and crunching, costochondritis, SPD, hip pain since then, various injuries).

First they make you see a 'ESP' which we finally established was an Extended Scope Physio, who contradicted most of what the previous physio had said (definitely no hypermobility, etc), but referred me for all the blood tests to rule out arthritis etc, and then the GP needed to write back essentially saying "no, seriously, when I said this patient needs to see a rheumy, I meant it", and then got an appt quite quickly. Other areas may differ.

Think I'll try getting private orthotics/podiatry (is it the same people?)

It doesn't sound reasonable to me. Is your GP not investigating the cause of your symptoms further? I would push for a referral, because surely you need to know the cause before you can receive effective treatment.

I would get a second opinion.

The orthotics thing is interesting. I have had pain in the balls of my feet for years. I saw a podiatrist about 10 years ago who said I had Morton's neuroma in both feet (a growth on the nerves between the toes if I remember correctly). I have inserts in the boots I wear most often - this is a ridge that runs behind the ball of my feet and it does seem to help.

I guess this could also be due to HMS, but strangely I've never thought about it! I was offered surgery at the time, but I couldn't have it done in the NhS and I couldn't afford it, or the time off work at the time. Does anyone have experience of this? Should I be looking at proper orthotics?

OoH Hi everyone,

I have hyper mobility, had problems mainly since my hips started to widen with dislocation in my knees, since I was 12/13,

had physio for like 4 years, I didn't get diagnosed till I was 17 and it was accidental at that, I was sat fiddling with my thumb, I can pull it all the way back and my physio noticed coz his wife has it, so I was diagnosed the day I was discharged.

Both my pairs of orthotics were customs and made a huge difference to my muscle fatigue and hip pain - they were £60 each plus appointments but worth it.

miemohrs, poor you. Not reasonable - go back and demand physio. Go back every week if you have to. Drugs treat symptoms, not causes, and only mask issues. You need good physio in order to make real changes. The NHS can be so drugs-happy sometimes. I rarely see the NHS about this sort of thing, if I can help it, but I've spent a fortune on physio over the years

:( can you afford private physio?

Or - if you don't have any sort of diagnosis yet - can you get private healthcare and pursue it that way? You absolutely need to get someone decent on board. I found that getting a recommendation then going to the GP to say 'I need a referral to this person please, these are the reasons why' helped - that's what I have done with my recent stress fracture, which was finally treated 9 weeks after the injury by a Physio, after I made 3 separate visits to minor injuries and fracture clinic.

Also if you want to lose weight I had a lot of luck with low carbing; there are some great support threads on here.

Oh, and with another more sympathetic GP, perhaps you could say 'look, I want to lose weight and I know I can through exercise. I am in too much pain and too much risk of injury due to my joints. Please help me get a diagnosis to aid my aim for better health'. There is, misguidedly, a lot of NHS initiative to help with weight loss aims - remember the recent suggestions to treat people who are trying to make healthy changes before any other non-urgent cases?

I have this too for me it?s the fatigue which you get is the killer although all the wet weather is not helping my knees and hands.
Although when I did find out I was pregnant the consultant did tell me I will be lucky to get to 32 weeks as my ligaments are so loose and guess what 40 + 2 weeks I was induced and had a lovely girl who has got the same problems, as mine is a genetic problem but now we know how to deal with it it?s all ok. Other than this we are both very active and healthy.

WELL HELLO! sorry to hear so many people are having problems but i'm so relieved to see you all. Recently diagnosed with HMS, my joints are a joke, according to my lovely new physio. The worrying thing is that DH is even more mobile and we have produced the ultimate bendy daughter. (only realising just how bendy now that dd2 is getting bigger and not able to fold herself through a letterbox kinda thing...)

Any tips for what to do with hypermobile kids? i did a lot of gymnastics when i was young, which was probably good for muscles but BAAAAD for joints. Are we looking at swimming?

(which i loathe, because my hip dislocates).

aitch I've been told swimming is good for hypermobility due to the lack of impact plus the all body workout. I've not been swimming in ages though because of having two young DC and no nearby swimming pool.

I'm probably silly, but I've taken up a contact sport a few months ago. Funnily enough one of the other girls is also hypermobile, and some of the full-fledged team ladies say they know loads of hypermobile people involved in the sport. So I'm hoping once my fucked up pelvis is functional I'll still be able to make a go of it.

Oh and my hip has always had a habit of dislocating. Often during sex - nothing kills the buzz like sudden pain and having to pop your hip back into its socket

ROAR.

and.

YUP.

I think that quote about not wanting to join any club that would have me as a member is more than usually appropriate here.

HMS, fibromyalgia, chronic migraine. My party trick is picking a foot up and pulling the leg straight up - when sitting down these days - not too pretty a sight in a middle aged woman .

Also unstable shoulders and hips, Bendy knees and elbows. Can't touch my thumb to my wrist, but ace all the other signs, even down to being the only short sighted person in the immediate family.

Back with the physio as it's all been rubbish the last couple of years, doing Pilates, found an excellent masseur I'm setting once a week - who I can freak out quite easily when I stretch out after a session

Can't take more than 3 doses in a row of ibuprofen etc, so mostly on co-codamol. And the sofa.

Yy to the hip popping out during sex too. Or should that be and?

Oh god yes with the sex - missionary is a complete no-no.