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Original poster

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

187 replies

NishiNoUsagi · 27/05/2013 22:24

Hello Smile

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? Smile I did a search but just found lots of threads about children with hypermobility (heartbreaking to read..) Thanks for any advice!

OP posts:
flow4 · 28/05/2013 09:28

Things falling into place... (if you'll excuse the pun!)

  • Dropped arches; have worn inserts for years now. (And if anyone is tempted not to wear theirs, let me warn you I've been told that is what has caused the arthritis in my knees, because my legs were misaligned for years).
  • Arthritis, presumably after half a lifetime of joints moving too much. It's worst in my knees, hip, right shoulder, wrists and hands, ankles, right jaw joint - that's pretty much everywhere, isn't it? Even my face hurts sometimes. :(
  • Extreme tiredness (but also just recovering fm anaemia and vit D deficiency).
  • Hardly ever had anaesthetic, but with episiotomy following childbirth I really annoyed the midwife demanding more and more... And the last couple of fillings I've had I opted for no anaesthetic cos it didn't seem to make any difference.
  • Walking is a particular problem, esp on pavements. Some days I can barely walk round my house.
  • I also bruise easily. Is this associated?

Are there any other associations/connections people are aware of?

My GP has been pretty useless. I had to remind her of my hypermobility when she made a physio referral recently. Hmm I have never seen a consultant. But I have been wondering if I should push for it... My mobility/ability to walk/climb stairs/lift things is becoming badly affected, and I'm scared that if I'm this bad now/already (I'm 47), I'll be in a wheelchair in a few years and have a miserable old age, so I cd really do with getting a proper assessment. Does anyone know how I go about it, please?

flow4 · 28/05/2013 09:33

Really grateful to the people sharing advice here :)
And thanks to those who explained the abbreviations!

ouryve · 28/05/2013 09:39

Another one with HMS, here, only diagnosed about 18 months ago after a lifetime of minor injuries, bad backs and being a general weakling. PE at school was a particular type of torture for me.

These days, I hurt a lot and pop enough pills to rattle.

Physio was no help with my knees, since they're just past it, but I did manage to finally stabilise my lower back, with help from aquatherapy sessions.

ouryve · 28/05/2013 09:39

Hydrotherapy. Brain's not working, this morning.

PickledMoomin · 28/05/2013 09:41

There seem to be a lot of us here.

I've been having problems for two years now- muscle twitching, pain, fatigue. Was referred to neurology and rheumatology. The only thing that has been dx is HMS.

I am a clicker to relieve aches, have joints that sound terrible when rotated and my elbows 'pop' when I carry shopping bags. My feet are flat and ache if I walk without shoes. And I have suspected endo.

DD can drop to the splits and bend the top segments of her fingers. Should I be doing something for her to prevent later problems?

SummerRainIsADistantMemory · 28/05/2013 09:51

Hey, I don't have an official dx but ds1 does and I have all his issues and more!

Flat feet my whole life as my legs don't support themselves right, back issues since I wad 18/19, my hips pop in and out of their sockets, my wrists crack and pop and I have to keep readjusting them, this has spread to my elbows and shoulders in the last few years, I can pop my jaw in and out.

I'm constantly exhausted and sore. I also keep hurting myself in ridiculous ways, if I lean on my arm for a few minutes it hurts like hell when I shift position, just sitting down in one position for a few minutes makes my joints burn and I keep doing something weird to my hand and chest: it feels like a muscle has moved and locked into position in completely the wrong place, takes a few minutes of deep breathing and very carefully trying to move the affected area before it pops back.

FindusLasagne · 28/05/2013 10:50

Finding all the tips incredibly useful. I second the tip about those instep things - they make shoes (especially those pesky ultra-flat shoes/ballet shoes with thin soles) much more comfortable and easier on the knees.

FindusLasagne · 28/05/2013 10:50

Can we get this moved to somewhere more permanent so we can continue with this? With it being in chat right now, I think it'll get deleted in 90 days (make that 89, now).

Twogoodreasons · 28/05/2013 11:45

Good idea Findus

Right, those of you who are on top of this, some URGENT advice please. I have a doctors appointment at 1pm. My lower back has not been right since I tried to run. It is now so painful I have trouble dressing my lower half and have to get my kids to pick stuff up off the floor.

I need to be at work for the next three days, so I want to ask for painkillers. What should I ask for?

OodPi · 28/05/2013 12:10

angel how do you find someone who specialises in HMS?

I don't need extra anaesthetic but I've always thought I had a low pain threshold and high tolerance for painkillers IYSWIM

FindusLasagne · 28/05/2013 12:48

Sorry, read your message a bit late Twogood so I think you're likely already in waiting room. Glad you're getting seen. As has been said above (thank you dolly and others), you do get much better advice/care from a rheumatologist so - if you get this in time - ask for a referral to one in your area as well as the medication you need right now.

Can't advise on meds since I just take 400 mg ibuprofen when it's really bad and that works for me, but I know there are better things out there for worse pain because the rheumatologist I saw told me to let him know if/when I needed something else. I thought someone further up recommended a drug but I can't find it now to point it out to you (I may have dreamt this).

FindusLasagne · 28/05/2013 12:55

I've sent a message to Mumsnet HQ to ask for the thread to be moved.

FindusLasagne · 28/05/2013 13:03

I've found it - Diclenofac, thank you toomuchtooyoung. Although now I read it again, I ntoice she says it doesn't really work for her.....

flow4 · 28/05/2013 13:33

Diclenofac didn't work for me either, and made me feel dizzy and sick. :( I now have naproxin, which works a bit, and doesn't make me feel ill.

The basic problem I have with pain relief is that the ones that work make me feel sleepy and dopey, and the ones that don't make me feel sleepy and dopey don't work. Hmm

And Findus, getting the thread moved out of chat is a very good idea... I've had some very useful info already, and it has only been here about a day!

SummerRainIsADistantMemory · 28/05/2013 14:00

The only painkillers that work for me are ibuprofen (mild pain) or codeine (takes the edge of severe pain)

Aspirin doesn't work and gives me blood spots all over my body, paracetamol doesn't work at all. In fact of I take a paracetamol and codeine mix like migraleve it even stops the codeine from working! I've had prescribed painkillers once or twice and they just knocked me out.

Twogoodreasons · 28/05/2013 14:27

Thanks all. He gave me a prescription for Diclofenac before I'd read this! He said it wouldn't make me dizzy as I specifically asked because I need to drive in my work and I'm in work this evening. I took one about an hour ago and feel a bit wobbly. The pain is no better - does it have a cumulative effect?

Original poster
NishiNoUsagi · 28/05/2013 14:38

Oh wow, I'm surprised and a bit sad that there's so many of us, but so glad that we're all around to support each other Smile

Findus Brilliant idea about having the thread moved, I'll report it too in case that helps.

PickledMoomin I think it's recommended for children to do low impact but muscle strengthening sports/exercises but there may be another poster around who can recommend something. It's horrible to think about it affecting our kids isn't it Sad Ds1 seems to wear out very easily but no other symptoms yet. Ds2 seems quite flexible but was an early roller and crawler so hopefully it's not affecting him do wish he's stop rotating his head like an owl though

flow4 That all sounds so horrible Sad I managed to get referred to a physio through my gp but I had to be a bit stubborn about how much pain I was in before she made a decision, so be prepared to fight your corner, take in some info from the internet about hypermobility, examples of what you can't do and what makes your pain worse.. If all else fails can you see a different gp? Our practice has lots and it's a bit random who you end up with which is helpful sometimes for 2nd opinions. Good luck!

Thanks to everyone who is posting, it's great that at least we can moan together!

OP posts:
OodPi · 28/05/2013 16:06

Diclofenac here too. I limit it because of breast feeding though. When I was pregnant I had codeine but if I took more than one it made me woozy.

IShallWearMidnight · 28/05/2013 18:09

something which can go along with EDS?HMS is POTS - it's easy to diagnose, but difficult to treat, and generally doctors haven't heard of it Sad.

IShallWearMidnight · 28/05/2013 18:09

EDS/HMS (not ?, I'm a rubbish typer today)

MNHQ
JulieMumsnet · 28/05/2013 18:29

Hi,

We've been asked to move this thread into a permanent home in health. Smile

flow4 · 28/05/2013 18:35

Oh good, thanks JulieMN. :)

cravingcake · 28/05/2013 18:46

Thank you Nishi for starting this thread. I wanna join too. I have this, diagnosed by physio after the birth of my DS. I'm now pregnant again (only 4 weeks) and already starting to suffer with my wrists and not being able to take pain killers.

I saw someone upthread ask about prolapses, yes I have one and I swear its connected.

FindusLasagne · 28/05/2013 18:58

Thank you JulieMumsnet. :)

PickledMoomin · 28/05/2013 19:30

It's worrying, Nish, both of mine walked at 9 months. Is there a connection? DD dislocated her elbow two years ago. She was 5 at the time. She's never received a dx. Is it worth getting one? She does lots of gymnastics and I worry this will be bad for her long term.

I read about POTS this morning. I suffer from terrible dizziness and frequently become anxious for no reason. I also get a terrible sensation (like too much adrenaline) down my left side which leaves me feeling shaky.

Podiatry gave me inserts but I haven't used them. I can't find shoes that have high enough backs for them to sit comfortably.

Do anyone's shoes wear down on one side? If so, stop wearing them as soon as this happens. Podiatrist was very pushy about this.

She said my muscle twitching was due to the muscles being over extended and the nerves not extending in the same way.

I've been considering starting Pilates.

Well done for suggesting this thread was moved.