AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

Oh I see, good luck in that case🙂

I think it's a great idea. Sometimes I wish people could experience the pain just for a few minutes. I only discuss my condition with DH and Dsis now as other relatives and friends think I should be over it.

I would love to have access to a Chronic Pain / Chronic Conditions board (@MNHQ).

It would be such a source of information and comfort,

My DD - 21 - has EDS with a whole host of conditions. Somewhere to talk about chronic pain would be so amazing.

Thanks for the spoons post, @Ouchwtfthistime - fed up with the specialists telling her to eek her spoons out 🤬🤬🤬❤️

To understand that the pain NEVER goes away. Even on a good day, its still there. Just not at the point that makes you want to jump under a bus.
The mental impact it has on you to know that it will never go away. Will never get better. That you will never ever find the absolute joy and pleasure you had before the pain. It will always be a watered down version of it.
That being awake at 3 in the morning with pain while the world sleeps is the lonliest place in the world.

Ha MyGazeboisLeaking I'm not sure I'm the best influence when it comes to spoons! I don't know how many the fuck I'm supposed to have or what the fuck I'm meant to do with them, it's a patronising spoon mystery.

Oh god yes, I'm stuck in my lonely cycle of pain, guilt and drug changing. The pain relief that did work for me was discontinued ( a GP initiative, all patients pushed off similar meds). Now I'm left trialling amytriptyline, it's done sweet f a , and comes with a seriously depressing likelihood of harm, I'm loosing my mind. I guess the holy grail of chronic pain is finding effective pain relief that isn't at the cost of developing heart problems or dementia. I'd love to know how others are coping.

I'd love this, please.

@Ouchwtfthistime

Ha MyGazeboisLeaking I'm not sure I'm the best influence when it comes to spoons! I don't know how many the fuck I'm supposed to have or what the fuck I'm meant to do with them, it's a patronising spoon mystery.

Exactly!!

Ooh, DD, you have 12 spoons... use them wisely... and guzzle this Codeine / Naproxen / handful of other pills at the same time 🤬🤬🤬

@Ouchwtfthisti- can I send you a canteen of cutlery, at all? 😍

Sharing tips and tricks would be great. And no I don't mean the kind of suggestions able bodied people come up with 😂

I want to know products that make life easier etc. Like some days I find holding a fork to eat really painful, I want to know if anyone has found a fork that is adapted for painful hands.

@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 would like a whole board so we can have specialised threads, sometimes questions get a bit lost in a big thread. But we should definitely have a long running thread within the forum just for company and support.

@TulesDana

Oh god yes, I'm stuck in my lonely cycle of pain, guilt and drug changing. The pain relief that did work for me was discontinued ( a GP initiative, all patients pushed off similar meds). Now I'm left trialling amytriptyline, it's done sweet f a , and comes with a seriously depressing likelihood of harm, I'm loosing my mind. I guess the holy grail of chronic pain is finding effective pain relief that isn't at the cost of developing heart problems or dementia. I'd love to know how others are coping.

So sorry, @TulesDana .

This is exactly the sort of thing that would be helpful to discuss.

DD is on amytriptyline for pain relief, plus codeine plus naproxen.

Finds cannabis oil capsules helpful.

A real cocktail arrived at by trial and error.

It would be amazing to share & discuss.

And @Ouchwtfthistime - who the eff came up with uckin spoons?

How hard would it have been to say, you've got 10 batteries in your body each day... you need 4 to shower, one to make breakfast and 3 to make lunch. Pace them out and use the other 2 wisely.

What bloody idiot thought of SPOONS??

@Redannie118

To understand that the pain NEVER goes away. Even on a good day, its still there. Just not at the point that makes you want to jump under a bus. The mental impact it has on you to know that it will never go away. Will never get better. That you will never ever find the absolute joy and pleasure you had before the pain. It will always be a watered down version of it. That being awake at 3 in the morning with pain while the world sleeps is the lonliest place in the world.

Ahhhh, @Redannie118 - and a board where people could post at that time, to feel less alone ❤️❤️❤️❤️

10??
Disbelief- being treated like you are a malingerer, crazy or both.

MyGazeboisLeaking feel free to send a canteen of cutlery my way. I'll inevitably drop the fucker and then stare at the mess on the floor. I also have EDS (hEDS) so I understand a little of what your DD is experiencing.

Yes, to tips and tricks. Also 'reasonable adjustments', hate that phrase and what they decide is 'reasonable'. I lost my shit over it today. I know I need to think about what I need, but FFS, can someone else do some sodding thinking for me please? I spend my life negotiating a world that's not set up for me. I'm constantly problem solving. Can someone please take the reigns for once and do some thinking for me or at least make some suggestions except for sodding spoons, please do not suggest more cutlery

I spend my life negotiating a world that's not set up for me. I'm constantly problem solving. Can someone please take the reigns for once and do some thinking for me or at least make some suggestions

Urgh this. It's the relentlessness of it all isn't it?

@MrsAvocet

10?? Disbelief- being treated like you are a malingerer, crazy or both.

So much this. It makes me so sad. And mad. There's been times when I've convinced myself I was a hypochondriac. The impact on your sense of self is immense.

And then when you finally get a diagnosis and your whole sense of self shifts on it's axis again. Who am I now? I'm not who I was, I can't do what I did, and I don't particularly like what I now am. But I have no control over that. I am stuck in a defective body with a brain that goes a million miles an hour when I'm not completely fucked with pain

11 the weight gain because you can’t exercise properly anymore and have to eat regularly to help your stomach cope with the pain killers, and you’re so tired you only want to eat sugar (though that’s the anemia probably)

I’m waiting latest test results, fully expect to be told “great news all your results all negative”. Even though I’m in constant pain and be dismissed. When you are not thrilled no doubt they write I’m a attentions seeker, health anxiety or drug seeker.

@LibrariesGiveUsPower45321

11 the weight gain because you can’t exercise properly anymore and have to eat regularly to help your stomach cope with the pain killers, and you’re so tired you only want to eat sugar (though that’s the anemia probably)

Then pair that with doctors saying, "oh you should lose weight, it's definitely that which is causing you pain".

I was slim when the pain started ffs

@Akire

I’m waiting latest test results, fully expect to be told “great news all your results all negative”. Even though I’m in constant pain and be dismissed. When you are not thrilled no doubt they write I’m a attentions seeker, health anxiety or drug seeker.

100% agree with this.

"fantastic, your tests are all clear"

Hmmmm. Why am i in agonising, continuous pain then?

So sorry for you, @Akire ❤️

I'd like a board please. My pain is from arthritis so it's identifiable but it's not curable and it affects me every single day, every single step I take.
Id love hints and tips, I'd love a board where no-one says "Have you tried turmeric?" or "You should cut oranges and tomatoes out of your diet" or "But you're really young, you can't have arthritis"

Sorry, that turned into a bit of a rant, I didn't mean it to. I need a board.

Yes @MedusasBadHairDay! And if I do lose it, I always put it back on.

But you look so normal/well/organised! Just fuck off!

Rant away Rae36

@Akire

I’m waiting latest test results, fully expect to be told “great news all your results all negative”. Even though I’m in constant pain and be dismissed. When you are not thrilled no doubt they write I’m a attentions seeker, health anxiety or drug seeker.

I've been there so many times. The only one which is continuously out of whack is my inflammation markers (it's too late to remember the actual name). They decided that this was just 'normal for me'...that conversation did not end well. I've had to fight to explain that static imaging will not identify my issues because predominantly my pain is worse on movement, I know something is subluxing or dislocating. Thank fuck for thoughtful therapists and orthotics who finally listened, tested every joint with care and declared that the majority of my joints sublux and various tendons like to get in on the action too.

Handhold from me Akire