Can we have a chronic pain topic please?

[DunravenBadger]

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. Posts get lost on the general health board and chronic pain / limited mobility doesn't come under "special needs".

I don't feel like they've actually paid any attention to what we are asking for and why. That's massively disappointing.

Ah that's disappointing.

There are so many areas, it gets lost on a long thread. I find it hard to keep up with the long skincare threads for example and people with experience miss questions or calls for advice.

Oh that is a shame ! I have had chronic breast pain for about 8 years and after being throughly investigated with a scans etc I've been told to just live with it :(
Agree with PPs that it would be nice to have a section to chat with others about this.

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.

I'm gutted, shows total lack of understanding about chronic pain. Shit

Agree with @Sooverthemill just shows chronic pain isn't important for some! Always changes if they happen to end up with it though! Such nice ignorance

"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"

I think this as a topic would be a great idea and I totally see why one long running (and long) support thread wouldn’t do the job at all. Chronic pain is not a one size fits all phenomenon, and there are multiple discussions to be had around multiple aspects of it. As others have said, suggestions and comments get lost in those long threads, and they’re not helpful to those who want to address one specific issue.

I too hope you’ll rethink this, MNHQ.

Honestly I would struggle to use a thread. We need a board. What I go through with fibro isn't the same as someone with EDS or trigeminal neuralgia or RA or ME and so on. Each of us have a diagnosis but every single one has a multitude of symptoms and they don't always cross over so a thread is hard to work.

I wanted to add an asterisk after the "each of us have a diagnosis" but that'll bold it I think. Having a board is something that will help those seeking a diagnosis too. I had NO idea I had fibromyalgia for years. It was only because I had friends in a non-related group who discussed their issues with fibro and I saw what they said and realised they applied to me too. I was still in denial for a while after that to be honest. I saw their posts and thought "everyone feels like that surely?" and apparently not. I spent a lot of time with my ex calling me lazy and useless so I just assumed I was making it up.

I'm lucky though that as soon as I spoke to my doctor about it (after leaving the ex interestingly enough) he actually saw what was going on and I was diagnosed a lot faster than most people seem to have with fibro. It's what he thought straight away but had me tested for everything else to rule them out.

Please rethink this MNHQ. We need a chronic pain topic not just a pinned thread. There are so many areas chronic pain impacts.... actually no, chronic pain impacts EVERYTHING. Sleeping; eating, mobility, friendships, parenting... just to name a few.

Please reconsider - i know i for one would use it. Many others would too.

So if it’s not going to happen yet should we just start a load of threads on the general health board - all of them with CHRONIC PAIN - at the beginning of the titles? Keep them going and show it’s worth it? I definitely think just one overall thread is not going to work, even if it is pinned.

I had NO idea I had fibromyalgia for years. It was only because I had friends in a non-related group who discussed their issues with fibro and I saw what they said and realised they applied to me too.

Similar story with the hypermobility for me, it was someone else with hypermobility telling me my symptoms matched theirs and directing me to HMSA that led to a diagnosis.

@MedusasBadHairDay

I had NO idea I had fibromyalgia for years. It was only because I had friends in a non-related group who discussed their issues with fibro and I saw what they said and realised they applied to me too.

Similar story with the hypermobility for me, it was someone else with hypermobility telling me my symptoms matched theirs and directing me to HMSA that led to a diagnosis.

It's ridiculous how long diagnosis takes isn't it! I was told for YEARS "it's just growing pains" Hypermobility finally diagnosed in my mid twenties after so many years of pain and being fobbed off.

I know fibro is similar. Friend of mine was fobbed off for years with it too.

Yes pls MN 😊

MNHQ please rethink the Chronic Pain Topic. We really need one. Chronic Pain impacts every single area of your life, from the type of pain you have, diagnosis, side effects, sleeping, eating, mobility, working, education, benefits, parenting, family life, travel, friendships, and these are just a few areas. Until you live with chronic pain you would not realise that. A Chronic Pain Topic would be an enormous help to so many of us who are suffering. Please, let us have a Chronic Pain Topic, even as a trial run while you assess. I think you will be surprised how much we will use it. Please listen to us. Chronic Pain is all encompassing and we need our own space on MN. You would be helping so many of us by giving us that.

@mnhq Within chronic pain are so many topics worthy of their own threads:
Seeking diagnosis
Medication journey and finding ones that work for you
Adjusting to your new life
Employment and Working with chronic pain
Parenting small children
Explaining chronic pain to older kids and learning to live with a disabled parent
Are just a few...

When seeking help on these issues in the main boards, chronic pain and the difference it makes is not really well understood. Then the dreaded drip feed accusations set in.

I find most of the disability specific forums great for benefits advice, but rubbish for parenting or employment advice.

Please rethink this @mnhq
Why not offer a trial basis.

Many people have complex needs, a single thread is too complicated to navigate and questions get lost.

@doadeer

Please rethink this *@mnhq* Why not offer a trial basis.

Many people have complex needs, a single thread is too complicated to navigate and questions get lost.

This. If you are worried about it not getting used, then can I just reassure you that the chronic part means we'll always need it.

And also, no matter how long we've suffered, somehow we'll always come up against new challenges or our bodies will find some need and exciting way to sabotage us. So we'll always have a need for new threads.

@mnhq I'm really, really disappointed that despite two threads with hundreds of women in chronic pain requesting such a simple thing as a chronic pain section in your health board, that this request is dismissed out of hand, via an email to one mumsnetter.

That is seriously disrespectful of all of us who have made this polite request, who are suffering with pain, chronic illness and/or disability.

We are not asking for a thread about cake decorating or crochet or golf (no offence to cake decorators etc). We are asking for something that would make a huge difference to our quality of life, in a world where enduring chronic pain and illness is often extremely hard, isolating and depressing.

I've always been a huge advocate and supporter of mumsnet. I took out the Premium thing when you were struggling financially. I am hugely disappointed and feel incredibly let down by your outright dismissal of this request because you simply have a lot of topics. Nothing about the merit of this request and it's potential impact.

This decision does Nothing to support mothers in need.

Please review this decision as a matter of priority.

[quote colouringindoors]@mnhq I'm really, really disappointed that despite two threads with hundreds of women in chronic pain requesting such a simple thing as a chronic pain section in your health board, that this request is dismissed out of hand, via an email to one mumsnetter.

That is seriously disrespectful of all of us who have made this polite request, who are suffering with pain, chronic illness and/or disability.

We are not asking for a thread about cake decorating or crochet or golf (no offence to cake decorators etc). We are asking for something that would make a huge difference to our quality of life, in a world where enduring chronic pain and illness is often extremely hard, isolating and depressing.

I've always been a huge advocate and supporter of mumsnet. I took out the Premium thing when you were struggling financially. I am hugely disappointed and feel incredibly let down by your outright dismissal of this request because you simply have a lot of topics. Nothing about the merit of this request and it's potential impact.

This decision does Nothing to support mothers in need.

Please review this decision as a matter of priority.[/quote]
Just to let you know, using "@MNHQ" apparently does nothing, you need to report your post to flag it to MN.

Oh thanks! v useful! I'm thinking of emailing actually. It's bad enough being in constant without this shit!

I've reported the messaged and pleaded for a board

Hi there,

Just to say that we are not ignoring this and we are continuing to have discussions at MNHQ - but in the meantime please do keep posting here.

I would love a Chronic Pain Board. I am in constant severe pain. I saw my GP about a year ago, and all she offered me was heavy duty Co-codamol. She wasn't really interested.

I am only in pain when I sit down, so could it be Sciatica, Piriformis or what?