AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

Thank you! That's good news @DunravenBadger
@MedusasBadHairDay we are 'okay'. Am speaking to DDs GP this afternoon. Spent a lot of the evening and early hours with her strapping hot packs to her joints and trying to distract her. It's such hard work. Hope you are all okay x

OK, I've started a thread in General Health about a specific pain-related issue.

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

That’s great news @DunravenBadger we need to make effort to keep checking the board. Slept ok here but sore hip and wrists not had for while so that’s always nice surprise to wake up to!

Here we go, another one:

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

And another...

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

This is the update from site stuff

HebeMumsnet

Morning, everyone.

We just wanted to pop in and reassure you again that we are still reading both this thread and the one started in General Health with interest.

We're sorry we haven't been able to just set a board up straight away but it very much isn't a 'no', more of a 'we need to see how it goes first'. We just need to be certain that a topic would be really well populated before we can commit to it, and the usual way we do that is by asking people to start threads and seeing how they take off.

The one in general health does seem to be being well used at the moment and we'd be glad to see that continue. Don't forget, you're very welcome to start other threads there, too, if there's a topic that needs it's own 'spin-off', if you like, from the main thread, such as seeking diagnosis, or a straightforward support thread. We understand that sometimes a very specific conversation about one aspect of a subject can derail a more general thread, and actually, the odd 'specific' thread working well would help show that there's enough support for a whole topic, too.

We hope that helps anyway. Please do let us know if you have any questions and we'll continue to keep watching those threads. flowers

Thanks, Akire.

Think of general chat daily check in space how about we fill up the original thread then we can have a rolling thread #2 etc. By then we can think of a snazzy name

www.mumsnet.com/Talk/general_health/4161868-Would-anyone-be-interested-in-a-chronic-pain-board?msgid=105339067#105339067

For the EDS people out there, can I ask a skin question?

Does anyone else get random petechiae? I get them from the usual, bra strap, carrying a bag on shoulder/elbows etc so I can identify the cause, but I also get them a fair bit on my feet. They're not in a distinct pattern, just little ones dispersed. My hb count is usually low (but cannot take iron supplements in any form) and the consultant decided it must be my periods (about the only thing that doesn't give me issues, v light) or a malabsorption issue but its never been explored. I'm just wondering if the bruising and petechia can affect my hb and wonder why I get them? Anyone else?

Also - sun. I get covered in blisters. The first time i told the GP they said it was molloscum, despite me explaining it only happens in the sun 🙄 I've not moaned about it since. I also get petechiae from the sun too, again I just try to cope alone. The summer is tough. My ankles swell and the heat makes me feel v faint. I generally just feel terrible so keep indoors and if I take DD away I can't go in the pool with her, I'm the weirdo under the brolly with a big hat, cotton long tops and linen trousers 😬

@Ouchwtfthistime my DD does! She gets them on her face around her eyes and eyelids . They are quite large usually and spread wide. She ‘probably’ has EDS trying for formal diagnosis as she has all the symptoms. I get petechia in the sun but I don’t have eds though assuming it’s my shit genes

That's v interesting! Is it wrong when I'm glad I'm not the only one 😬

I know what you mean about shit genes. Your posts resonate with me because I know I've got a battle on with getting my DD diagnosed with it as well. I can clearly join all the dots with her and she's had paed involvement since birth but it's the same s me, head and brick wall trying to get them to listen. I'm hoping we don't have to wait until she's in a right state until they actually hear me. I just want her to have the right care through life. If I'd had the right care, I know I wouldn't be in quite the mess I am now, and I would have had better oversight in pregnancy which ended in her coming 8 weeks early (which has had knock on effects for her). I don't want that for her when she's older.

@Ouchwtfthistime I'm so sorry. Yes DD came early ( only 4 weeks but Labour stopped 3 times at 24, 30 and 34 weeks). My hips have never been the same as they loosened so much during pregnancy. I lost bother other pregnancies and do wonder
DD has been under a paed since less than 1 I can't remember initial reasons. Eczema? Croup? Low weight and height? Allergies? Definitely not her hyper mobility but always always mentioned by any doc who saw her. She saw a paed every few months until she became very ill age 14. Then our lovely kind one was taken away by CP and we had a shit one.

If I'd had the right care, I know I wouldn't be in quite the mess I am now, and I would have had better oversight in pregnancy which ended in her coming 8 weeks early (which has had knock on effects for her). I don't want that for her when she's older.

So much this. It would have been so useful to know about the hypermobility before the pregnancies, maybe the SPD would have been taken more seriously - my hips/pelvis haven't been right since. I'll also always wonder if it played a part in DD being prem (10 weeks).

I'm going to be keeping a close eye on both DC to see if they start showing symptoms, and trying to teach them that just because they can over extend a joint doesn't mean they should.

@MedusasBadHairDay god yes! I am now wondering if you can have EDS mildly. I do have some symptoms but I guess people do

[quote Sooverthemill]@MedusasBadHairDay god yes! I am now wondering if you can have EDS mildly. I do have some symptoms but I guess people do[/quote]
I've got hypermobility syndrome, so the slightly less terrifying sibling of EDS. I was told by Dr Kaz-kaz that I could be diagnosed with either EDS or JHS at the time, but I think under the new definition I'm squarely in the HSD box.

I'm "lucky" in that it's mostly just joint pain, and while it affects other bits of me (crap circulation, heart palpitations, digestion, etc) they are very mild and just an inconvenience rather than life changing.

Posted before I finished..

We're pretty certain my brother has it but milder than me (just one joint affected) and that it probably came from DM's side of the family, as she was double jointed.

@Sooverthemill I think a real problem for people with hypermobility and EDS is that you're so used to certain things you don't recognise them as a symptom. I thought holding a pen or pencil was painful for everyone, I thought those round knob door handles were tricky for everyone. The list could go on and on but I never explained them to a doctor because I didn't know they were unusual.
My siblings all have similar although lesser symptoms but I know they wouldn't go for a diagnosis so part of the reason I want to be assessed for EDS is if they were to get worse they would be able to point to my diagnosis and get diagnosed and helped faster.

[quote RitaFires]@Sooverthemill I think a real problem for people with hypermobility and EDS is that you're so used to certain things you don't recognise them as a symptom. I thought holding a pen or pencil was painful for everyone, I thought those round knob door handles were tricky for everyone. The list could go on and on but I never explained them to a doctor because I didn't know they were unusual.
My siblings all have similar although lesser symptoms but I know they wouldn't go for a diagnosis so part of the reason I want to be assessed for EDS is if they were to get worse they would be able to point to my diagnosis and get diagnosed and helped faster.[/quote]
Yep. So much of my time since diagnosis is spent saying, "wait, this isn't normal??"

Like sitting in the W pose, not liking chewy food because it makes my jaw click painfully, and loads of others.

@RitaFires @MedusasBadHairDay I was talking to DD about this at the weekend ahead of my chat with GP yesterday. She didn't know it wasn't supposed to hurt to hold a pencil/pen. She didn't know that not everyone has terrible pain in their knees. She didn't know it's not 'normal' to have a hot burning itchy mouth after eating fruit ( me too, a revelation when DD was ding by a kindly dietician 8 years ago). She didn't know that it isn't normal for her shoulder to pop out when she put on a t shirt. Or any of the other stuff. If we had known ( and if she had told me some of this at the time but of course her whole life including pre verbal she was like this) we could have pushed her paediatrician. The one we had was fab and her dermatology paed was also fab but no one ever told us what was 'normal'. She's my only child so I didn't know ( my two step kids are 3 and 6 years older and though I think both have some hyper mobility their mum is hyper mobile but not to anything like this extent).

How do you tell if it's HSD or EDS type 3? I have the digestive issues etc as well as the joint pain but I've never been sure whether it's HSD or ESD. Do you know if there is a definitive way of knowing? The doctor basically just gave up after doing the Beighton score thing.

How do you tell if it's HSD or EDS type 3? I have the digestive issues etc as well as the joint pain but I've never been sure whether it's HSD or ESD. Do you know if there is a definitive way of knowing? The doctor basically just gave up after doing the Beighton score thing.

I definitely have stuff crop up that I didn't realise wasn't normal. Like when I told my Mum about the joint hypermobility syndrome (as it was known back then) and showing her my bendy-ness and she was just so shocked and told me that wasn't normal. I had no reason to assume it wasn't tbh.

@DunravenBadger

How do you tell if it's HSD or EDS type 3? I have the digestive issues etc as well as the joint pain but I've never been sure whether it's HSD or ESD. Do you know if there is a definitive way of knowing? The doctor basically just gave up after doing the Beighton score thing.

Mine was the same saying I am hypermobile and have fibromyalgia as if they were unrelated. She asked me if I had a traumatic experience that triggered the fibromyalgia and do I know when it started. As far as I know I've been better and worse at different times but I feel like I've been like this forever so I'm going to pursue an EDS diagnosis once covid is less of an issue.

@DunravenBadger

How do you tell if it's HSD or EDS type 3? I have the digestive issues etc as well as the joint pain but I've never been sure whether it's HSD or ESD. Do you know if there is a definitive way of knowing? The doctor basically just gave up after doing the Beighton score thing.

I definitely have stuff crop up that I didn't realise wasn't normal. Like when I told my Mum about the joint hypermobility syndrome (as it was known back then) and showing her my bendy-ness and she was just so shocked and told me that wasn't normal. I had no reason to assume it wasn't tbh.

There's a PDF here that gets into the details of it, called hEDS vs HSD: www.ehlers-danlos.com/ehlers-danlos-info/

I remember being at school doing PE, thinking that the kids who couldn't touch their toes were taking the piss, because I could put my hands flat on the ground and didn't even feel any strain. I had to bend my elbows too in order to feel a stretch.

When I went to Pain Clinic they told me I was hypermobile after making me stretch.
I asked what they could offer to help my pain, all they gave me was stretching exercises to increase my flexibility .
When I told them exercise was making my ME fatigue symptoms worse they just discharged me, because "if you won't follow the graded exercise program there's nothing we can do for you".
ME clinic referred me to CBT, some of which was useful (advice on pacing and spreading out activities to manage energy levels), some of it less so (Chronic pain is all psychosomatic and you can think it away, nobody should be on long term pain relief). I took the good and ignored the bad advice.
I still don't know if I should pursue any treatment or a full diagnosis for my hypermobility unless I actually dislocate something and need hospital intervention.

Thank you @MedusasBadHairDay I don't think I meet the criteria for hEDS then as I only have two or three from feature A criterion 2, meet feature C but not feature B. So don't think I meet the criteria.

There does seem to be very little help offered for those of us with hypermobility. It's incredibly frustrating. I suppose it's a common theme for most chronic pain conditions though.