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Original poster

Would anyone be interested in a chronic pain board?

343 replies

DunravenBadger · 10/02/2021 18:11

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]

OP posts:
Dizzywizz · 01/03/2021 17:34

Another who overdid it Grin when do we learn??!! Struggling today, thank goodness I had today as a days leave (I have holiday to use up) and tomorrow is my normal day off.

RatherLostPenguins · 03/03/2021 10:04

I just posted on the AIBU one when I meant to post on here. Bloody brain fog has been ridiculous recently, I've been speaking to friends on social media and thought what I typed made perfect sense then couldn't understand what things were meant to say when I reread them. Blush

PaperMonster · 03/03/2021 13:10

I’ve been off work for a few weeks and have to go back in soon. I’m dreading the driving, it kills me.

MedusasBadHairDay · 03/03/2021 13:59

@PaperMonster

I’ve been off work for a few weeks and have to go back in soon. I’m dreading the driving, it kills me.
Driving is really tough. I used to have a car that was perfect for me (it was more of a van, ugly as sin, but I could drive it for hours without being in agony). But it got written off last year when a tree fell on it, and now I have to drive a compact car and it's so painful just doing a 30 minute commute.
user1497873278 · 03/03/2021 14:39

I can’t believe that there is a weight lifting board, but no sign of a chronic pain one, it’s maddening

Akire · 03/03/2021 15:41

They have posted on the new thread on site saying they will keep an eye if enough people are interested. What does that mean? Do we just start every separate thread under general Heath?

Then if there are enough we get own board? I like others feel like being holding back starting all these threads as get lost. But does seem until we get some mythic number of users responding or some pre ordained number of threads it’s watch and wait?

MedusasBadHairDay · 03/03/2021 15:43

It's frustrating because, IME at least, long threads like this and the one in AIBU soon just become the same few posters talking amongst themselves. So difficult to prove there's enough users who would use the board, plus you'll get users who don't care enough to argue for it in a thread but who would use a board if it existed.

MrsAvocet · 03/03/2021 15:53

And the problem with long threads is that a question is easily missed if it's posted in the middle of another discussion, whereas if the poster started new thread they would be more likely to get replies. Also, it can feel like you are barging into a private conversation on some long running threads where everyone seems to know each other and new people don't then join in.That would be the exact opposite of what is needed!

Original poster
DunravenBadger · 03/03/2021 15:57

Tbh @Akire I've no idea what it means. We've had the site stuff thread, this thread, the AIBU thread and countless threads before them over the years and always receive the same response of "we'll keep an eye on it". Their response makes me just want to find an alternative site. One where we don't have to fight for chronic pain support. There's only so much fight left in me and I'm very nearly done fighting as I'm just too tired!

OP posts:
SingToTheSky · 03/03/2021 16:06

If it weren’t for the fact there are heaps of other boards for various topics - some with not much footfall - I wouldn’t find it so hurtful. I don’t really understand why it’s such a big ask compared to say a Wimbledon board Confused

MrsAvocet totally agree about feeling like you’re barging in on long running threads. People fall off them, and it can end up being just a few people and seeming cliquey even if it absolutely isn’t. When you feel really low as it is, having the confidence to “barge in” when the regulars might not notice your question let alone have the same experience is hard.

2021isgoingtobeasshitas2020 · 03/03/2021 16:06

Yes please
I have Ra and fibro

Currently have swelling on my knee and it's really getting me down Sad

PerkingFaintly · 03/03/2021 16:10

Yep, a board sounds like a good idea. I've previously thought long-running threads might work, but you've convinced me a board structure is better.

user1497873278 · 03/03/2021 17:27

A chronic pain board would help so many people, often relatives living with people suffering chronic pain need support and advice

Akire · 03/03/2021 17:39

There are so many aspects of chronic pain that we could discuss we often don’t acknowledge to ourselves how it changes us or our relationships. Some changes will be for good appreciating the small stuff but some are really awful and can feel devastating. Or sneak up behind you and get you on a bad day.

Original poster
DunravenBadger · 04/03/2021 17:25

Hi All,

I've just realised I've had an email from MNHQ regarding this. Sadly this was their response:

Hi DunravenBadger, and thanks for the suggestion for a new Chronic pain section. We're doing a fair amount of work to reduce the number of areas on the Talk boards and we're not planning on launching new boards for a while. However, it's great to see that the Chronic pain request thread has turned into a support thread and seems to be working well.

So for now, could we suggest that you start a thread called,
Chronic illnesses & pain support thread and see how it goes?

There's already a model for this type of thread from the Mumsnetters who are doing the Cancer support series.
The Chronic illness and pain support thread could go in either General Health or perhaps in the Autoimmune area (where we might be able to pin it).

Let us know your thoughts - we think the support provided in a thread or threads is a good idea, and there's definitely a demand for it. We'd like to check the popularity and usefulness of support threads for now and return to the idea of a new section once we've seen how these go.

Kind regards,
Michael.
MNHQ

OP posts:
MedusasBadHairDay · 04/03/2021 17:33

Really not impressed with that.

I wouldn't want to have to ask questions in this thread, while I know everyone would do their best to help if it was something quite niche (eg. About a rare disease/comorbidity) then it would remain unanswered unless the right people happened to be on the thread around the same time. Especially during peak use times.

Plus I think a searchable resource would be so valuable, while you can technically search a thread it's so difficult to trawl through to find relevant information.

painting2014 · 04/03/2021 17:50

I would like a chronic pain board. I think it's a great idea and agree it would be much better than having one long thread.

MrsAvocet · 04/03/2021 18:11

I agree with you Medusas. A single thread for such a wide ranging topic won't work in the long term. And putting it in the Autoimmune area is an absolutely ridiculous idea. Obviously there's overlap but there are masses of people who have chronic pain but don't have an autoimmune condition hence would never visit that board. It certainly wouldn't ever occur to me to look there for support with my problems.
I also don't think that the popularity of a support thread is a good indicator of the value of a board, for all the reasons that have already been discussed on the current threads.
Very disappointing.

Akire · 04/03/2021 18:39

The problem is as some like diabetics have their own board you expect other major life changing illness to have their own too. When you can’t find one it puts you off starting one. When “General Health” is for earache or odd one off questions rather complex multiple serious conditions.

Do we need start a new general support thread without begging on the title then?

redpandaalert · 04/03/2021 19:00

Maybe we should just overwhelm them with multiple threads...

I’m sick of not being heard - all those with chronic pain are this is just another case

To be honest I think I’ll just abandon mumsnet just like they are abandoning us

Original poster
DunravenBadger · 04/03/2021 19:02

@redpandaalert

Maybe we should just overwhelm them with multiple threads...

I’m sick of not being heard - all those with chronic pain are this is just another case

To be honest I think I’ll just abandon mumsnet just like they are abandoning us

I was thinking the same. Why did they bother telling me on Site Stuff if I started a thread here and it gained enough interest they'd think about/ discuss it? Their response sounds like they had no intention so why not just say that from the off Angry
OP posts:
Navilana · 04/03/2021 19:34

I stayed off AIBU and your board request yesterday, @DunravenBadger, because the waiting was just stretching out before me and I didn't see it go anywhere with the pleas from others posting (lovely people) because there was no response from MNHQ.

Now I've read MNHQ's reply. How f**king awful!!! Why don't they just re section the boards that don't get used?! Clearly there's no need for those, as there is no traffic.

I couldn't understand why the Cancer Support Thread didn't already long ago "transform" into a board (they sure deserve it too!), as it would be a delight to just FIND keyword searches, instead of having to go through 20 pages on each thread, hoping you find something that actually helps.

I'm pissed off. What kind of crap DIY response this is, it's not rocket science is it?

OhYouBadBadKitten · 04/03/2021 20:10

@DunravenBadger

Hi All,

I've just realised I've had an email from MNHQ regarding this. Sadly this was their response:

Hi DunravenBadger, and thanks for the suggestion for a new Chronic pain section. We're doing a fair amount of work to reduce the number of areas on the Talk boards and we're not planning on launching new boards for a while. However, it's great to see that the Chronic pain request thread has turned into a support thread and seems to be working well.

So for now, could we suggest that you start a thread called,
Chronic illnesses & pain support thread and see how it goes?

There's already a model for this type of thread from the Mumsnetters who are doing the Cancer support series.
The Chronic illness and pain support thread could go in either General Health or perhaps in the Autoimmune area (where we might be able to pin it).

Let us know your thoughts - we think the support provided in a thread or threads is a good idea, and there's definitely a demand for it. We'd like to check the popularity and usefulness of support threads for now and return to the idea of a new section once we've seen how these go.

Kind regards,
Michael.
MNHQ

How patronising Angry Do you think they think we are so addled with pain we can't work out how to use forums?

We've given umpteen reasons as to why a long standing thread isn't the way forward for us. But apparently we don't know what we need - they know better.

year5teacher · 04/03/2021 20:11

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.

OhYouBadBadKitten · 04/03/2021 20:13

How would people feel about asking if we can change the Autoimmune board to Autoimmune and Chronic pain conditions?
We'd need to ask the inhabitants of the autoimmune board how they would feel about it.