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!

Well, does anyone have experience with glucosamine and chondroitine supplements?
they apparently encourage the collagen and hyaluronic acid in the body.
Might make sense to take some?
Anyone and does it help?

I used to take glucosamine sulphate actually... It made my nails stronger, not sure about my joints though

coffee I don't have experience with glucosamine & chondroitin in humans but I did used to work for a pet food company which did a lot of research into these things and know that they should be taken together to get the full benefit.

On a slightly different note, does anyone know anything I can take or do to relieve lower back pain?

I'm 5 weeks pregnant so came off amitriptyline when ttc and now I cant even take ibuprofen and want to avoid paracetamol as much as possible (unless it gets unbearable). I've found a hot water bottle helps but anything else would be great to try. I already have a 19month old DS so resting isn't much of an option.

I'm trying to get into the gp in the next few days to get referred to physio to get splints for my wrists (carpel tunnel syndrome), and hopefully a belt/tummy/back support for when my bump really starts to show.

I've already looked for pilates classes but there aren't any in my area that suit for me to go to.

That's how I know, craving I researched it for my dog. He gets supplements everyday.
I think I'll start taking the human variety, and if it boosts the collagen then I'll be looking radiant and glow-y as well.

I had trouble taking glucosamine because it's most readily available as glucosamine sulphate, and it turns out that I get an allergic reaction to the sulphate which aggravates my arthritis. Our very good but now ex-GP said sulphate/sulphite/sulphide is known to cause joint inflammation in some sensitive people...

Like ishallwearmidnight I have been diagnosed with POTS and also have been diagnosed as bring hypermobile. The two are connected, I seem to think excess collagen plays a part??
My lower back is just about always painful, as is my left hip. They are both worse with hormones . I'm always knackered and always sluggish. I'm not sure how much is being in the menopause, HMS or POTS.
Waiting to try drug to increase my low blood pressure, and hoping that will help slightly....

it's DD2 who has POTS (and EDS) but I could probably get an EDS diagnosis myself, despite not having very many actual problems (I had bunions removed, my knees hyperextend and i have to be careful how i close my jaw after yawning). It's just that having had to do so much research to get DDs diagnosis and find a specialist, other people might as well get some benefit of that .

Anyone in London/SE with POTS needs to try to get a referral to the autonomic unit at St Marys in Paddington under Professor Matthias, and for EDS/HMS you need Professor Grahame at UCHL.

Bath has a specialist Rheumatology hospital, so GPs in that area ought to be aware of referring there (DD1 has been very impressed with the physio there).

Out of the SE you should be looking at rheumatology referrals, and from there to physio. For POTS see if there's a "falls clinic" (usually under services for the elderly) as they will be more aware of POTS - apparently older people who fall and break hips etc quite often have POTS, but don't like to admit that they fainted/blacked out as they are scared of it being epilepsy, which has quite a stigma in that age group. So they pretend the "just fell", but the specialist clinics are usually aware that there's something more, which is helpful to know.

connection is faulty collagen (so anything that's not muscle or bone) - so with POTS stretchy veins means its easier for blood to pool in the feet nad ankles rather than moving round the body. The brain then protects itself by firstly making the heart beat faster, then by causing a faint (which gets everything on the same level, meaning the blood can flow properly).

Luckily I go to a POTS clinic so I am receiving pretty good care. Will query the HMS more when I go next week for my appointment.

Dd1 has POTS and pectus excavatum alongside EDS. It causes her a lot of problems but all we have been told is to up her fluid and salt intake.

She has some days where she feels dreadful and has had a few faints/collapses and ended up in a+e it is really horrible.

Marking my spot here. I was diagnosed today so delighted to find this thread!

Back to the docs for me tomorrow. I just threw up at work - not good in the middle of a crime scene! Diclofenac is clearly not good for me! What else might work?

Dh goes to Bath for his spondy appts even though we live in Cumbria as they are specialist(he used to live there though so not advrand. Was feeling it would be a bit extreme

Sorry pressed post!

It felt a bit OTT thinking about getting referred there for me especially with the regular ones needed at first. Dh goes yearly so it's easier

Try naproxen/naprozyn. It works a bit for me - just takes the edge off - and has no side effects. Tbh, nothing works very well for me: codeine is pretty good for the pain, but makes me too groggy to work or think, and I certainly can't drive.

Naproxen in the news this morning as a lower risk painkiller.

Thank you, I have a telephone consultation at 12 so will suggest naproxen.

Can we buy Naproxin over the counter?

Can I join too? Have the beginnings of a stinking cold and I haven't read the entire thread, so this is more marking my place. But briefly, have been diagnosed with EDS III. Suspect my mother (now dead) had hypermobility too. As well as bendiness, back problems and weak ankles/wrists, I have a whole load of associated health problems: Raynauds, IBS, postural hypotension, multiple severe pelvic organ prolapse (and other childbirth injuries).

Off to have a (medicinal) whisky.

There are so many of us!

I've been so dizzy the last few days. Feel drunk without drinking. How do you make it stop?

thenight, I was going just to say 'no', but then I Googled it and discovered that naproxen is available over the counter in the UK as 'Feminax Ultra', sold for period pains! It's expensive tho (9 tabs for over £4!) so it'd almost certainly be cheaper to get a prescription.

thanks Flo. I'll try the over the counter stuff first to see if it works for me, then I'll go down the prescription route.

Cocodamol doesn't help with nerve pain. You need pregabalin or gabapentin. Although one side effect of them is weight gain, which is probably not helpful when you're already overweight :(

My sympathies, though - that burning nerve pain is awful.

Oh and can I once again recommend to everyone the hypermobility forums - they are full of excellent advice on all topics:

www.hypermobility.org/forum/index.php