AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

None of which are a constant presence in someone life and cause considerable problems.

Brilliant idea Ouchwtfthistime
I have a neurological disorder which causes muscle pain, and also osteoarthritis which I've been dealing with since I was a teenager but was only been confirmed by an MRI a few years ago. I had to fall over and injure myself to get that.

Yes please. I've had a slipped disc since last June with severe sciatica and I feel like I'm barely existing in a nightmare

@mnhq please.

A board with PAIN in the title.

What an amazing idea, I'd be fascinated to hear everyone's stories, the ups and downs and find a space where everyone can understand that right now I'm laying in bed alone, my DH sleeps on the sofa, I have a hot water bottle on my burnt and scar stomach, having just got out of a burning hot bath.. taken pain medication just to sleep and start again tomorrow.

All this while running a business, arranging to meet a friend for walks, raising teenagers and trying to hold it all together.

It's so lonely.

And covid for me has been a break from pretending to be ok and not having to cancel any social gatherings, or worse attend and be in pain while everyone around you laughs and has fun. I'm now a bit scared of the world opening again.

Also booking a holiday and your mind thinking please don't flare up, please let me just have two weeks.. begging your own self to comply.

Am slowly making my way through reading all the posts.

Just wanted to add my vote to say this is a great idea. Maybe a board called Chronic Pain/Conditions? There are a number of chronic conditions that don’t come under an auto-immune banner, some which can cause pain and some don’t. That kind of title would feel more inclusive to me.

Not sure why MNHQ need to think about it? There are some blooming random boards on here, what did it take to get them set up?!

@doadeer I'm so sorry. What's the problem, is it discs in your lower back? Did you manage to contact the consultant. You sound very similar to me. X

@LST I'm thrilled for you!!!

Come on @MNHQ what is there to think about? Please can we just add the extra board?

@ChristMyArse

I had a very hard pregnancy with pelvic girdle pain mixed with my hypermobility and it didn't resolve after birth. It put so much damage through my lumbar spine I've damaged the facet joints. The inflammation presses on nerves so I get pain down my legs and horrendous lower back pain.

Hoping they can offer something else they haven't tried.

What's your story? 💐💐

@ChristMyArse

Ouch that sound very debilitating I’m sorry.

And covid for me has been a break from pretending to be ok and not having to cancel any social gatherings, or worse attend and be in pain while everyone around you laughs and has fun. I'm now a bit scared of the world opening again.

I hear you. I've really enjoyed being able to attend gigs where I can guarantee seating that doesn't cause me pain. And not being that person who cancels plans last minute because I've had a pain flare.

Well, the rest of the world seems to think that if everyone pretends we're not in pain, then we won't be. So...

I'm walking around the house like Quasimodo today. I've had a really bad shoulder for a few days but I must have slept in a weird way because of the pain so my shoulder/neck have totally seized up and it's also caused lower back pain.

I normally manage my pain between cocodamol and exercise (mainly Pilates and yoga) but with lockdown I don't have any classes to go to and I don't like doing them at home without having my posture corrected if I'm doing something the wrong way as that can cause even more pain in the long run.

We've been having a really stressful time so my sleep is all messed up too as I'm having nightmares most nights and any time I try to have a nap as well. I don't use amitriptyline to help with sleep any more but I do have some in the house still so I'm tempted just for a couple of days if it'll help me get a proper dreamless sleep again. The doctor was fine with me coming off it and said to just start again if I needed it so I may have to for now.

@MedusasBadHairDay yup. I am the carer for my daughter who has chronic unmanaged pain from very severe ME, EDS and POTS plus endometriosis. She is in agony day in day out. She's not allowed IV morphine at home ( she can't tolerate it orally). I never go out because she's not safe to leave alone and we can't get social care here.She never leaves her bed in a dark room. But since March 2020 we've seen brand new films, gone to concerts ( quietly) and museum, art galleries? Selfishly I'm hoping it all continues because the quality of my life during Covid lockdown has improved immeasurably

Adding another plea here @MNHQ

I’ve been in a flare for three weeks now, I’m exhausted. I live nowhere near my family and friends so there’s no way I will burden them by talking about it. ‘Everything’s fine, same old, how are you?’

A board where I could actually talk would be amazing.

I’ve done so much more in lockdown as everything out of reach before because of access issues or pain or fatigue was now in reach. Been amazing, hope least somethings can stay. Even though begrudge things you asked to go online before weren’t possible but over night were when it affected everyone else!

It's notable that the first two points on this thread were:

1. Denial
2. Loneliness

The pain doesn't go away when we don't talk about it.

The not-talking-about-it cuts us off from others.

A complete failure to acknowledge our reality doesn't serve as a "useful distraction"; it just serves to isolate us even when we're surrounded by people. There's nothing like being consumed by something you're not allowed to share, to make you feel totally alone.

Shame.

Being treated like an addict due to the pain relief that enables you to live a relatively normal life. Being talked to like dirt by pharmacists dispensing your legal necessary prescription. Nurses opening conversations and appointments with ‘morphine?’ before even asking what you’re there for because it’s all they see on your record. Doctors refusing to see or treat you for post surgery infections because they’ve decided you’re ‘drug seeking’. Midwives treating you like dirt and assuming you ‘have a social worker’ because you went through pregnancy on painkillers (I am a sw, thanks!)

I make a formal complaint each and every time. It’s not on to treat me that way and it’s extra not on for them to treat people who ARE addicts that way either.

You're made out to be an addict because opiates are the only thing that touch your pain.

@Akire
The first time was about a year ago, the most recent was 6 months ago. X

@PerkingFaintly

It's notable that the first two points on this thread were:

1. Denial
2. Loneliness

The pain doesn't go away when we don't talk about it.

The not-talking-about-it cuts us off from others.

A complete failure to acknowledge our reality doesn't serve as a "useful distraction"; it just serves to isolate us even when we're surrounded by people. There's nothing like being consumed by something you're not allowed to share, to make you feel totally alone.

This is so true.

The mental gymnastics of thinking through something as simple as going for a meal after work with colleagues (I've only made it once). I didn't know the layout of the place we were going and wanted to make sure I was at the end of the table so I could get out easily, but also stand when I needed to. Then sitting in training days and being desperate to stand to relieve the pain (& then being in pain because I've stood 🙄). The last minute meeting which might only be down the corridor but I know will have a knock on effect and will impact my ability to take my DD to her activity later.

All of these things, every day, all in silence, all alone. The mental load compounds the physical pain and harvests further fatigue.

I think I posted it AIBU. I actually de-registered my MN account because MNHQ couldn’t have cared less. I had so many posters backing me up, just like this thread.

MNHQ asked me to get back to them with what we actually wanted - I did - but they unfortunately did not have the courtesy or respect to respond or acknowledge me.

@PerkingFaintly

It's notable that the first two points on this thread were:

1. Denial
2. Loneliness

The pain doesn't go away when we don't talk about it.

The not-talking-about-it cuts us off from others.

A complete failure to acknowledge our reality doesn't serve as a "useful distraction"; it just serves to isolate us even when we're surrounded by people. There's nothing like being consumed by something you're not allowed to share, to make you feel totally alone.

Very well said Perking

I really hate that we feel we need to beg MNHQ. It actually feels like another humiliation on top of every day humiliation of asking for help, from doctors and from other people. We are asking for help - for a space where we can talk to and support each other and yet again we are being put on hold while they 'think about it.' :(