AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

The absolute slog of trying to get a diagnosis to find out what the fuck is wrong with you and why you feel like you have flu every evening.

I hear you MuddleMoo, I hear you

I agree and would love to be able to share and discuss. I've definitely taken to hiding how I feel from close family as I think everyone is tired of hearing about it and thinks I should be 'over' it by now.

@year5teacher

The absolute slog of trying to get a diagnosis to find out what the fuck is wrong with you and why you feel like you have flu every evening.

This, this with bells on, constantly being dismissed by the gp, it's depressing.

@Akire

Love to hear why people thinks it’s an unreasonable request. When it’s something affects millions of people, please enlighten us why it’s such a bad idea.

@Akire I was thinking the exact same thing!

The loneliness of it.

Yes please...I'm tired of suffering in silence...

By which I mean seeing people tuning out as you try to converse with them, & realising you have nothing in common with anyone any more. Even your DH. I feel more affinity for strangers online than anyone I know in RL & I suspect I'm not alone in this.

I voted you are unreasonable but only because I wonder - Why a whole board? Why not just a running thread in the health board? You might get more responses that way than when solitary threads are posted in a topic🙂 Have you tried starting one? Hope you all get some relief soon, it sounds super tough 💐

(I say this as someone with a very particular health problem, I found the long running threads more helpful than specialised boards which tend to be quiet🙂)

I think it's a very good idea 👍

The having to pretend nothing is wrong and you are fine.

@PurpleFeather

I voted you are unreasonable but only because I wonder - Why a whole board? Why not just a running thread in the health board? You might get more responses that way than when solitary threads are posted in a topic🙂 Have you tried starting one? Hope you all get some relief soon, it sounds super tough 💐

I have never found the right board within the Health section. Unless your chronic pain is because of an auto-immune disorder or diabetes etc.

Chronic pain is so diverse and everyone will experience things differently. Plus there are so many topics - I think Chronic Pain board within the health section is much needed.

@missnevermind

If you ever talk about your pain relief you are told that you must have a codeine addiction because you refuse to stop taking your painkillers

Oh my god this.

I was told so many times you're not addicted are you? No! I'm just trying to get through the day with a fucking toddler and shooting pain through my body.

Because sometimes, people who don't get it, think you're whining, begging for understanding, and if you juuust took "a bit more" pain relief, everything would be fine.

We tried that PurpleFeather. Unfortunately there's so many of us on it with so many different topics to discuss we can't follow it very well and posts get lost. We may all have chronic pain but we all have different problems and issues we want to discuss; as I'd hope to show here with this thread.

I've been accused of being a drug addict ( was referred to drug services by the dr) and my last hospital admission a nurse assistant decided I was dealing the drugs my dr was giving me and I ended up with the police at my door. I'd discharged myself due to bullying - this nursing assistant decided I was and I quote "a lazymotherfucker" and would refer to me by that throughout the admission, everyone found it hilarious. Oh and, she diagnosed me as a pathalogical liar and attention seeker.

Not only did my pain go ignored by my diabetes as well.

Oh god doadeer, I read that as trying to get through the day without shooting my toddler in the head 😬

God yes to PIP. I sent my re assessment form off last weekend. Its the first thing I think about every morning. Is it likely they'll just decide I am no longer worthy after receiving it since 2016?

@Becca19962014

I've been accused of being a drug addict ( was referred to drug services by the dr) and my last hospital admission a nurse assistant decided I was dealing the drugs my dr was giving me and I ended up with the police at my door. I'd discharged myself due to bullying - this nursing assistant decided I was and I quote "a lazymotherfucker" and would refer to me by that throughout the admission, everyone found it hilarious. Oh and, she diagnosed me as a pathalogical liar and attention seeker.

Not only did my pain go ignored by my diabetes as well.

That's appalling. Utterly appalling.

Even with a thread, there would be a need for diverse topics (depression, PIP info, side effects, best meds, how to cope with people who don't get it, how to prepare children, TTC while chronically ill,...) . A board would have sections, a thread doesn't.

@AnExcellentWalker

By which I mean seeing people tuning out as you try to converse with them, & realising you have nothing in common with anyone any more. Even your DH. I feel more affinity for strangers online than anyone I know in RL & I suspect I'm not alone in this.

You're not alone. I sometimes wish dp could just have 3 hours in my body just so he understands

@Becca19962014 that is soooo wrong on so many levels!!! I really hope you filed a complaint against the assistant? What vile behaviour

@LST

God yes to PIP. I sent my re assessment form off last weekend. Its the first thing I think about every morning. Is it likely they'll just decide I am no longer worthy after receiving it since 2016?

I've just been through this again myself. Fortunately it was reawarded and thanks to COVID I didn't even have a telephone assessment. Thank fuck for that. The last time I had a face to face the assessor declared 'but you work!' 🙄

Having a separate board makes it more of a long term resource. Anyone can fall downstairs tomorrow, bugger up their back and then be in pain for the rest of their lives.