AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

This is so weird, I was asked if I could be hypermobile by one doctor and I said no, as he said you had to be able to press your back of your hand against your arm and I can't do that.

However I always sat in a W as a kid. My party trick was pushing my legs around to the front whilst siting, until the knees touched at the front!

I also could easily place my hands palm down bending from the waist. I just had to be careful not to over bend my knee forwards at the same time.

I can't chew as my jaw gets too clicky and my mouth swells with certain things including tomato ketchup.

Weird eh, wonder if I have mild hypermobile ? What do you think ?

@Worrysaboutalot not sure where the GP got that criteria from. Here is some info on the diagnostic criteria for hypermobility:

www.hypermobility.org/hsd-diagnostic-criteria

ehlers-danlos.com/wp-content/uploads/hEDSvHSD.pdf

That second link, under Criterion 1, that's generally what they use to diagnose hypermobility spectrum disorder.

It generally involves a positive Beighton score and joint pain. There is also asymptomatic hypermobility too where the joints bend but the person may have no pain.

Also what do people mean by sitting in a W?

Links to current threads on the general health board

www.mumsnet.com/Talk/general_health/4186306-CHRONIC-PAIN-wrist-cutlery

www.mumsnet.com/Talk/general_health/4186503-chronic-pain-accepting-your-diagnosis

www.mumsnet.com/Talk/general_health/4186690-chronic-pain-things-that-help

www.mumsnet.com/Talk/general_health/4187392-CHRONIC-PAIN-Trying-to-adjust-to-losing-my-mobility-and-using-a-chair

Oh yes, please! A place for easy acceptance. No-one questioning my pain. A place with true understanding.

@Pinkfreesias

Oh yes, please! A place for easy acceptance. No-one questioning my pain. A place with true understanding.

Post in the general health board and start your topic with 'Chronic Pain -' and we will find you :)

If you are technically minded post a link on this thread, but hopefully we will find you anyway :)

@DunravenBadger

Also what do people mean by sitting in a W?

Sitting on the floor. Instead of sitting with your legs crossed in front of you, your legs are flat in front of you until the knees then your legs fold back along the floor.

It is meant to look like a W when viewed from above but if you are the person doing the sitting it looks like an M. With the middle V being your body, the two top points are your knees and the first straight lines being the bottom part of the legs to the feet.

I used to sleep with my legs in a W pose, and apparently when I was really little my mum used to find me sleeping with my feet next to my head. So all the signs were there, decades before the pain started. Wish I'd known, I could have been a bit more sensible with my body and maybe delayed the pain starting.

@Worrysaboutalot like hero pose in yoga? Obviously that's not me! I love that pose, so comfy

Yes, that's the one!

Oh that makes sense. Thanks for the visual @Sooverthemill

I think the hypermobility tests are so limited. I have huge range of hip motion in external rotation (sitting in butterfly, fire log, can easily get leg behind head) and I don't do any exercises to encourage it anymore. You can have excessive range of motion through many, many joints, in fact every joint! Not just what they measure with Beighton scale.

There are positions in yoga that are commonplace but require excessive range (see pic 3). Obviously it doesn't mean you will have chronic pain, but for me being pregnant and releasing relaxin into my pelvic joints was just a nightmare, I was so loose my entire lower half was agony trying to contain the movement. That caused so much strain through my lumbar spine I damaged the facet joints. Every time I go to an appointment they ask if I was in an accident, no but I carried a 9lb baby and suffered immense strain.

Such a limited understand about all of this, in my experience.

Starting another “CHRONIC PAIN - ...” thread shortly - done something to my hip. 😬

I don't know how to link it on the app but I've just started a Chronic Pain - Diet thread under General Health.

I'd definitely prefer a board rather than a thread. I find the really long threads very overwhelming, a bit like being in a really noisy room.

That’s a good description cherry - so difficult to keep hold of the many strands of conversation. I’m on some long running threads, and they are very supportive and friendly, but they aren’t demanding in the same way - it’s about stuff like decluttering/housework, so as much as it’s nice to comment on each other’s achievements etc it’s not essential to keep track of everything like if they were asking advice about serious issues like pain management and disability aids!

Hello hope everyone doesn't mind, I've added another thread to share day to day - good and bad! Open, safe space

CHRONIC PAIN - share your moans and achievements
www.mumsnet.com/Talk/general_health/4188376-chronic-pain-share-your-moans-and-achievements

Sorry, it's been a rough few days. Stupidly I've read some of the above posts and bookmarked but now I can't face trawling back to reply, I just can't do it today.

I'm pissed off at my wrist. Because it's in this plastic cast my range of movement is limited but because my elbows twist all the way round, I keep catching myself going into what should be out of range angles which I know will not be helping the attempts at realignment. It's as bad as when they put in me a cast last year and set my arm in a 'normal' position, that was torture for 6 weeks. Urgh, sorry, I really moany tonight. Other arm is fucked from overuse and work has been horrific...moan moan moan

It's times like these we need a board. I need to come over to general health and look at the individual threads too, but not today. I thought it wouldn't harm to give this post a bump too..

Oh I'm so sorry @Ouchwtfthistime thats very tough, on the post below yours there's a general day to day moan thread! Come join us there xx

@Ouchwtfthistime is it worth asking MN to edit your title to have CHRONIC PAIN at the start? Then it will be more visible with the other CHRONIC PAIN threads.