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 a bad reaction to diclofenac unless its a topical cream.

That link to POTS, thank you! That's me!

Putting my hand up to this too.

Discovered that my general bendy-ness had a name after a car accident 9 years ago. Over the years I've come to realise that a lot of niggling problems I've put up with are connected to the problem.

I've permanently spasmed (sp?) upper spine and shoulder muscles (causing a hump) due to an accident as a teen. If I'd known about it and had physio at the time (as I did with the second accident when I was diagnosed) I would have avoided years of pain.

Going back to Cory's post, I had a double prolapse after having the DCs.

Long term problems with pain at Dentists leading to a phobia. My current Dentist is a star and has taken on board the hypermobility/anaesthetic issues and doses me up accordingly. I'm still terrified but at least I know he won't hurt me.

Constant ankle and knee problems (have plantar fasciitis too atm which aggravates it further, bastard feet) Hips dislocate if I kneel or sit on the floor awkwardly, or if I try and slide out of a car like a supermodel

I also have hypothyroidism and asthma which often trigger each other - my hypermobility gets worse at certain times of the month (hormones) so if my thyroxeine is off it can make my HMS worse.

Bad days I feel like such a hypochondriac but luckily, so far, it's all annoying and irritating rather than actively debilitating. I do wonder what I'll be like when I'm older though. I'm 42 now and it hurts when I stand after sitting too long, or when I get up in the morning. ATM I can walk it off easily, but what if that stops being the case?

Pickled, what you say about muscle twitching is interesting - I get a lot of that too. Thanks.

Do wear your inserts. Wear boots more often, if you find it hard to get shoes that fit them. I didn't wear mine because no-one explained to me why they were important, and now I have arthritis in both knees and one hip as a result. The doc said my hip was like a 75yo's. I'm 47. :(

MrsDTK, is there a known link between hypermobility and hypothyroidism? I have been 'borderline' hypothyroid for about 6 years now, and am being tested every few months to see whether my thyroid function has got low enough to justify thyroxin...

Not that I've seen flow, it's just something I've noticed for myself (that my HMS seems to be affected by hormones, that hormone production is affected by Thyroxeine/hyperthyroidism so cocking the latter up affects the former)

I got diagnosed with HMS earlier this year. Some of the dozens of people I've seen over the years had suggested it but it was invariably pooh-poohed by the next one - I'm not at all hypermobile thanks to another condition causing tight muscles.

Got prescribed amitriptyline which relaxes muscles and made my hands much better but when I took more than a tiny dose it showed how ropey all my other joints are. Physio may help. I did start pilates as recommended by postnatal physios but managed to injure myself immediately...

Naproxen doesn't do much for me but at least has no side effects. I'm allergic to diclofenac. Codeine is great if I didn't need to deal with baby in the night. Hoping I can do enough exercise and get tolerant enough to take more amitriptyline.

Most recent physio said I should order orthotics online for about £30 rather than wait 6 months for a NHS referral. Anyone done this?

Ah yes, thanks MrsDTK. My HMS is definitely affected by hormones - it's much worse around the time I ovulate.

notcitrus, I think your orthotics need to be made for your feet. I guess you could order some 'off the peg' as a stop-gap if you can afford that - but if you're going to do that, there are some much cheaper on Amazon.

My NHS referral only took about 3 weeks... But I imagine it's one of those things that depends a lot on area and demand on local services.

I'll try harder, flow. They're still in the packet in the car. I have another appointment in a few weeks and I'd hate to say I hadn't tried them.

I haven't discussed HMS with my rheumatologist but I will at the next appointment. He has asked neurology to see me again even though they said they couldn't find anything wrong. The neurologist mentioned my thin and stretchy skin but said it wasn't due to one of the genetic HMS conditions.

A lot of PCTs are no longer recommending diclofenac be prescribed long term, due to risk of cardiac effects. It gave me the squits, anyhow, just like ibuprofen did when i was self medicating.

My rheumatologist said i shouldn't need anti-inflammatories, but when I started on my hydrotherapy, I couldn't even do the exercises without them and the week before my period was hell. It was just too painful and I'd end up tense and tearful. I now take naproxen which is much better when I wrench something, keep myself dosed up on paracetamol or co-codamol, depending on my pain levels and take trippy pills amitriptyline in the evening, so i don't spend the night awake, wishing I could find a comfortable position.

I get the muscle twitching, too. It's quite disconcerting, specially when it's a whole thigh.

Pickled and ouryve - you both have rheumatologists... How did you get your referrals? Did you just ask your GP?

Can I join? I find myself getting more pain as I get older and more things seem to click out of place and take longer to flick back into place

My jaw is driving me nuts at the moment, clicking out of joint and panicking me, and recently my index fingers have gone weird and I have to sort of bend them sideways to get them back in place.

Bloody awful isn't it? Much sympathy to you all.

And orthotics definitely depend on area. I gave up on chasing my podiatrist for appointments and just order them from amazon, though i currently don't have any shoes that fit my wide feet that I can get them into. I've got some nice walking trainers which support my feet well and stop them from rolling in, but they're a couple of years old and beginning to get worn out.

I find that wearing crocs as slippers stops me from randomly toppling over, sideways, in the house.

I got a referral from my GP, flow. Actually, I got a referral from the nice new GP who said I shouldn't have to live like this. The older ones just declared me old and arthritic (I was 41, at the time) and wrote prescriptions - one of them even laughed at me when I took in a list of symptoms.

My GP referred me after neurology discharged me.

I've been very fortunate - my consultant is also a parent at school so I already 'knew' him. He's been very supportive. He sent me for an MRI of my leg two weeks ago which I'm certain will come back as normal. Nice to finally be taken seriously.

I'd push for a referral if I were you. My GP did hundreds of blood tests first which showed very little other than low ferritin.

Oh wow, may I join please? Have posted on a few hyper mobility threads but I'd love to join this one.

Currently on crutches with a suspected navicular stress fracture, on top of everything else .

I have a HMS diagnosis via a physio. I've always loved yoga, but it's Pilates which really helps. I'm not doing it at the moment as it's hard with 16 mo DD and my other commitments.

I play hockey - love hockey - but have had to cut my training in recent years due to chronic injury, including SI joints, knees, back pain, ruptured ligaments, a fractured ankle, and now the stress fracture in my foot. I'm always bloody injured but am miserable when I'm not playing. I'm 29 by the way - in a ridiculous amount of low level pain for someone my age, but I have a high pain threshold and often don't notice injury as it happens.

My mum has chronic fatigue, funnily enough...

I'm extremely clicky and clunky - neck, shoulder blades, spine, hips, SI, pelvis, knees, ankles, toes, fingers, wrists. The hip thunking/locking described above is particularly familiar. I have had orthotics for years now and swear by them, and lately have been wearing them all the time. I can no longer ride horses due to knee pain, which is really sad.

I really hope DD doesn't inherit it, but I hope to encourage less physically destructive sports than my own.

I have a sedentary job, but finding sitting all day quite draining and painful, despite trying to maintain a decent posture.

I sympathise with the jaw, nightsky. Mine clicks every time I open my mouth

Oh and yy to the muscle spasming thing; especially in my thighs, glutes, and thoracic spine.

This is a great thread. I've never met anyone before who understands all the clicking and locking of joints. Funnily enough I had chronic fatigue when I was late teens and never realised the two things were connected.

I was dx with CFS too. Never felt like it really 'fitted' me though.

Just came across this.
I'm very bendy and flexible.
When I was younger my party trick was to bend my fingers back until they touched the back of my hands.
I have allergies, and can't walk properly - keep putting my feet to the side, they just seem to snap at the ankles.
Didn't know there's a conditon for that!

Just popping on to say hello. So happy to find this thread!

I'm very hypermobile but haven't been officially diagnosed as it hasn't presented any huge problems beyond constant sprained ankles and bendy party tricks. But since I've been pregnant it's been awful - my ankle spontaneously dislocated at the weekend, I wasn't even doing anything! Weird SPD stuff too.

I am beginning to think that there is probably some stuff I should be doing now (I'm 30) to avoid worse problems later on, so I'm going to talk to the GP about it next week...

Thanks ouryve and Pickled. I have 'hypermobility' on my med notes, but have never seen a consultant, and really feel I need to now. Like you, ouryve, I have a dx of arthritis and sometimes feel like I'm a hypochondriac, because I've been investigated for so many other things... :(

I have the jaw thing too. And arthritis now confirmed in the left side of my jaw, which has dislocated since I was a young child...

What's the connection with CFS? I have recently had that suggested by the GP, but then they discovered I was anaemic and vit D deficient, and the idea of CFS seemed to disappear...

Ooh yes to thin skin too

cory I have a prolapse which has been made worse by having DC2. I'm only 29 so when u went for gyn appt the Dr started off telling me how I'm too young for surgery etc. He then took a look and announced that my prolapse was very impressive for a woman my age and told me in no uncertain terms that I need surgery. I got a date through but it was unsuitable as I'm still BF and my son is only 6monthd. I will not be allowed to loft him for many weeks when surgery is carried out. I'm dreading surgery too.