Would anyone be interested in a chronic pain board?

[DunravenBadger]

Hi all,

I posted in Site Stuff but MN have recommended I post here. I've seen a couple of threads about this where MN have said they're "interested" in what's being said but nothing ever comes of it. Sometimes posts get lost here in general health and chronic pain / limited mobility doesn't come under "special needs". I thought it would be good if we had a specific board.

Would anyone be interested if MN set up a board specific to chronic pain (or similar if anyone has any alternative suggestions?

[Title edited at OP's request]

Yes! I have fibro and M.E so
This board would be very helpful, not just for the ideas but also for friendship.

Welcome, @loveislouderthanwar.

Can I ask, how are posters getting their diagnoses of chronic fatigue, specifically CFS/ME? From your GPs?

My rheumatologist has noted I may have 'arthritis-related fatigue' and gave me a leaflet on it which basically says to have a nice lie down occasionally. That was it.

I mean, I wasn't expecting an episode of Holby City or anything to miraculously unfold with top specialists attending to my every need the minute I wandered in, but I thought being given a leaflet was a bit lame.

This condition when it strikes isn't 'tiredness' - it's debilitating, crashing fatigue of the body and brain.

And interestingly (to me, anyway!) the Imraldi and HRT and thyroid meds aren't helping the episodes of fatigue at all 🙁

On the plus side, the AZ vaccine didn't make it worse!

Diagnosis stories or lack of are really important. But quite traumatic for some
People so would like a proper place for it. Think it’s a a lot down to luck and your GP and once you have something everything gets blamed on that.

Currently body very naughty huge amounts of new issues and pain but trying get taken seriously is hard , and fully expecting latest bloods all be fine. So it be just bloody get on with it and everything else. Can do one more day in pain not next 30 years no one understands

Yes please. Lupus, Fibro and costochonderitis here. Would be great to have a place to talk to other people who really understand what chronic pain is, and what living with it means.

Akire... I so feel for you. Every small "new pain/ache" adds to our list. But if that doesn't really fit with what we have on paper, it's often still disregarded because of that diagnosis on paper. There is no parallel-work where specialists hold conferences together, it seems. Frustrating!!

Yesterday I couldn't cope with the back pain and the lingering migraine from the day before. (not often enough to be considered chronic) Can't lie down for long because of the back, can't be on my feet too long because of the head. So... heavy painkillers helped, but turned me into a zombie, I just ache less. My 8yo whispered at bedtime "It's not your fault mum, so it's okay." Broke my heart.

Shosha1 welcome!

We're all hoping MN will grant us a board real soon but don't let that wait stop you from posting x

Navilana That's so sweet but also devastating.

I really struggle with my kids having a mum who just can't do loads with them. DH had been taking them on walks during lockdown, and it's so hard when they ask if I'll be able to come too.

Thanks @Navilana sometimes you just need someone to understand. People really think you have a headache you take 2 pills
Job done. So if you in real chronic pain there will be loads of good drugs you can take. When often side effects for even moderate drugs can be very troublesome.

Sometimes I take the awful side effects of some drugs just have a holiday from the initial symptoms. Change as good as a rest, sounds silly but it’s true.

Totally get it Akire. Sometimes I do it like you said, for the same reason. I might even get rid of the main pain and get a bit lightheaded

Oh it's all just a bit "meh" the last couple of days and then you feel sort of "less worthy", like MedusasBadHairDay said, not normal enough to participate in full. (Love that nickname, btw!) Like playing basketball with one arm. Only, most of the chronic pains are invisible. And sometimes it sucks more than others.

Getting on with it seems hollow then, 'coz very few "normal" people (even HCP) seem to understand the effort, the power you need to ignite inside, to be able to do just that.

Quick count over 75 people who said yes. Come on @mnhq not everyone has an illness that’s well funded with charities and support and the like. That’s if you have a diagnoses at all. That doesn’t help when you have 2-3-4 conditions that over lap either.

Any news yet @MNHQ ?

Wish this Board Process was something popcorn worthy ... But now it's making me a bit anxious

Maybe we need to start an AIBU thread...AIBU that Mumsnet needs a chronic pain board. Traffic = seen.

@Ouchwtfthistime if you do start an AIBU thread, let us know so we can all come over

I've raised it with them on my original Site Stuff thread but they've just said thanks - not particularly helpful tbh. Come on @MNHQ can we at least have an update?

Hi
Can I add myself to the Chronic Pain request?
I'm 45 with hypermobility, OA in hand and foot and now DDD in my lower spine. I'm fed up unable to tolerate the side effects of amitriptyline, naproxen, ibuprofen, gabapentin and pregablin so left with just paracetamol which is rubbish and cocodamol than turns me into a sleepy zombie.

Please Mumsnet can we have a board for chronic pain sufferers?

Thanks

Just bumping for a hi 5 we all made it to another Friday

I'm feeling proud of myself today. I'm Volunteer of the Month for the organisation I do some voluntary work for. Which would always be nice, but especially as I've not had a great month pain wise I'm really pleased to be recognised. There's no prize or anything, just a mention in despatches type of thing, but it's nice to feel valued, despite my limitations.

I'm interested. RA here . I'd like a PIP thread in particular.

Ok, off to AIBU I go...

www.mumsnet.com/Talk/am_i_being_unreasonable/4177599-AIBU-in-thinking-that-Mumsnet-needs-a-Chronic-Pain-Board?watched=1

Someone go and help a woman out please 😉

Are u going list thing works do u want us to

Just jump on in there and add what you want, no rules, it's just to get it going to show there's things we want to discuss. If it doesn't get pulled for being TAAT...

I can't believe that there isn't chronic pain/illness board on Mumsnet when there are boards for everything else. Chronic pain is sadly really common and there are many conditions/injuries/illnesses that result in chronic pain. Most are invisible in society and sadly on Mumsnet too. @MNHQ please rectify....

Yay for making it to Friday. Although I'm studying so don't feel I get weekends.

Well done @MrsAvocet that's great news! Even better when you've been struggling too.

Thanks for starting the AIBU @Ouchwtfthistime. Disappointing to see a couple of people have put YABU without adding comments as to why, but proves the point perfectly that some people just don't understand which is why we need a dedicated space.

Hopefully helps nudge MNHQ we have lots of other hardy used ones. Or we start every thread we would like to start under genera health board as chronic pain XXX