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]

That’s ok many of us don’t have a specific name for pain or maybe have one condition then forever fobbed of that you can’t have anything else wrong because you have X.

Pain is like having a radio on constantly in the background (really loud and annoying) it’s really hard to filter and concentrate on normal things. No wonder it is extra knackering. I also find myself not listening to what my body needs in other ways so not had wee for hours and hours or eat or drink because you are forever telling your body fingers in ears I’m not listening.

Or my classic that I’ve slept or sat on a pen or sewing needle for hours because any normal person would jump up and think what’s that? What’s going on? We just try and carry on and ignore it because that’s how It is all the Time.

I’ve wondered about posting on this thread a lot, and haven’t yet because I don’t know if it would be insensitive as I’m not the one with chronic pain. I would find the board useful, coming from the other side as it’s my dp who has had chronic pain (undiagnosed) coming up to 5 years now.

It is at the point that he is just existing. It limits both of our lives in various ways, and my MH is shot because I feel helpless, stuck in limbo and sometimes selfish.

Sometimes I could really do with a rant, some advice or even just to hear from people in the same situation. But I have refrained from posting on the relationships board (never mind AIBU!) because I know the replies would likely go down the ‘ltb he’s lazy/gaslighting/whatever else’ route, when it’s not so black and white with someone who has been on heavy medication and in pain for so long.

It is a lonely life, on both sides.

@year5teacher hugs

You can't do this indefintely, I know.
You will run on "empty" in time and that situation is even more exhausting than the one you're in now. I'm very sorry, I saw you on the AIBU thread and I remember being so sad for you, but I don't remember exactly what is going on.

Do you know why your GP hasn't referred you to specialist care? Do you have any idea what might be wrong?

Anybody think of an alternative forum as Mumsnet doesn’t want us

@StareIntotheMaggotDrawer It is definitely lonely. I wish you much strength together!
I know the judgement/lack if understanding of others might hurt, as it has me and my partner. And people have their opinion ready so fast...

I ask my partner many times if he hasn't grown tired of "my shit" yet. (Jokingly, but we talk seriously too, thank potential gods) It impacts so many fields of life, it's bound to have an effect on your relationship, too. Where is his pain situated, if I may ask?

When I told my partner about Dunraven's thread, he was giving thumbs up the whole time.

Now (after reading MN's response) he says, go to Reddit (they have a pain board, but I don' t like the set up of the page as much as here, and I don't know if it's kept up to date) and I don't really know anymore what to do about the haven I thought I had found!

Wish you all a refreshing evening with new idead tomorrow

@Navilana thank you I think what I find so hard is that it comes out of nowhere. I can feel ok and then suddenly get hit with pain, tiredness, nausea etc.
I don’t know what the problem is. I have chronic (like ten years) pain in my hip and knee, had tests and x rays, nothing. I also get really sore skin and my whole body almost, apart from my arms, hurts a lot when I press it. I don’t know what it is. I’m currently being investigated for coeliac disease which is obviously different but would explain the gastro issues.

@year5teacher

Hello everyone, I have posted a few comments on this and the AIBU thread. I feel like a terrible imposter as I currently am not diagnosed with anything. I spoke on the other thread about only just coming to realise that it’s not normal to feel like I’ve been run over multiple nights a week.

It’s been so, so ridiculously hard. I’ve been in work every day since January teaching face to face and dealing with behaviour which is consistently on the brink of descending into serious, serious shit unless I keep an incredibly right hand on it. And I’m so tired and in pain so much of the time. I don’t know how I’m supposed to keep doing this indefinitely.

You absolutely shouldn't feel like an imposter, it was 7 years before I got a diagnosis. Not having a diagnosis didn't make my pain any less chronic.

"Hi DunravenBadger, and thanks for your thoughts, we're sorry you're disappointed.
We thought that this might be the first step - to get an idea if a new area would be popular and that you could work with us on this.
We're not keen to set up new sections without clear evidence that they'd be well-used.
We're keen to move forward with this, but please let us know if you're not interested in running a support thread and we'll try a different approach.
Best,
Michael.
MNHQ"

Nobody runs support threads do they? Yes someone needs set up the post but are they expecting you to become a mod?

MNHQ, please listen to us.

A chronic conditions board would be great. It would be a much better place for us to find each other than General Health which fills up very quickly with miscellaneous stuff. I want to talk about specific issues affecting other people with my condition or similar conditions.

A single thread just wouldn’t give us that. We’re too diverse a group for it to work.

MNHQ - Some things we want to talk about just don’t belong in General Health, e.g. applying for PIP. That’s something where you benefit hugely by getting advice from others in a similar position, but it’s too specific to put in the money boards. A Chronic Conditions board would be perfect for it.

Or mobility aids. Again that doesn’t belong in General Health. There’s nowhere for that at the moment but chronic conditions would be perfect.

It would be so great to have separate threads for many different issues, that would get lost on general health boards or on a single long running thread.

I’d be posting on threads about chronic illness and the following:

• parenting toddlers/young kids
• finding work that won’t make me more sick
• achieving small things (like a thread to share when we manage things like putting the laundry away)
• exercise (because sometimes I can manage the gym or a home workout and other times I can’t get out of bed)
• maintaining a house, cleaning etc
• mental health

And any number of specific things like if someone asked about particular symptoms or charities or mobility aids or anything. All in the context of CP.

How about ‘Chronic conditions and disability’?

That would leave the general health board free for all the acute stuff, and we would have a place for all the issues surrounding the longer term stuff.

Yes it would be so useful, so many aspects to chronic pain and trying to live with it. Parenting is one I had forgotten about. But the biggest for me is feeling so alone within your family unit, as no one understands how could they. They hurt they get better we don’t, come on MNHQ aren’t we worth it.

I could do with a bit of a handhold tonight - a chronic pain board would be very useful.
I've really stuffed up today. I try to pace my housework through the week so I had my "set" tasks to do today. However when I got up this morning I discovered that DH had already started a massive spring cleaning exercise and had passed the point of no return where there were huge piles of stuff strewn all over the floor. He was right in that it did need doing, and now we've actually finished it the place looks a lot better, but it could have been done in bite sized chunks rather than a massive all out assault. It took pretty much all day, and then this evening I stupidly went on to do the "routine" jobs that were meant to be done today as well. I'm now in agony and DH is completely oblivious.
I'm angry. Both with him and with myself. I know I will be paying for this for several days now. I should just have left the other stuff. Arrgh! 😡

We have all done that. There reaches a push point where it’s going to hurt regardless so it’s tempting just to do more and finish the job as it’s going be agony next few days anyway. Might as well get your money’s worth eh!

Was there a reason why you had to help so extra stuff or would he have got bored had way and you be stuck with the place a tip?

MrsAvocet It's so easily done. Could you talk to DH about how it affects you, so he knows for the future?

I'm coming late to this. I agree that a dedicated board would make sense since there are so many different issues associated with chronic pain. Please reconsider, MNHQ.

I also have EDS/HSD, and am currently struggling with a costochondritis flare up. I can't walk around with a hot water bottle stuffed down my top all day; it gets in the way rather. Very frustrating.

Hope you spend a quiet, relaxing day today, MrsAvocet.

Ah yes fashion and chronic pain who hasn’t wrapped/tied an hot water bottle or ice pack around various bodily parts then opened the door looking slightly deranged.

Currently have tens patches and wires on
Head doing a great impression of Frankenstein

@Akire I’ve been clubbing with a tens machine 😂 we used to poke the wires out of the arm of a dress and tape them to the straps of a tiny bag that carried the main unit.

@SingToTheSky

It would be so great to have separate threads for many different issues, that would get lost on general health boards or on a single long running thread.

I’d be posting on threads about chronic illness and the following:

• parenting toddlers/young kids
• finding work that won’t make me more sick
• achieving small things (like a thread to share when we manage things like putting the laundry away)
• exercise (because sometimes I can manage the gym or a home workout and other times I can’t get out of bed)
• maintaining a house, cleaning etc
• mental health

And any number of specific things like if someone asked about particular symptoms or charities or mobility aids or anything. All in the context of CP.

Absolutely all of this.

How’s has everyone’s day gone? No kids to send back to school here but I imagine some of you have had that joy.

Good thing had a lay in

Bad thing Stomach issues causing lot of pain today. Still trying find out what’s wrong