AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

Being nagged to exercise and then being in agony which your painkillers barely touch .

Rant away Rae36

Thanks. I dont usually bother because it doesn't change anything and it just comes across as a bit moany but sometimes I need it.

@MedusasBadHairDay

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?

Relentless is the word. I wish I could quit.

@Rae36 Snap! Let's rant together

@goose1964 yes!! It's a big vicious pain filled circle

Joining you all.

Agree with you all. Denial, loneliness, guilt, grief fear etc.

And the bloody spoons thing. Wft.

Pain started 10 years ago. Ignored for 8 complete (take a bath, do yoga, go for a walk 🤬). Eventually diagnosed with axial spondyloarthritis. Wasn't explained to me so it wasn't until I got home after the appointment and googled I found out what it was.

The only person (medical wise) I've seen who was remotely honest and therefore useful was a pain management consultant.
He said to take codeine. Because it's the one which damages you body and brain the least (he actually said the one that fucks up your body the least - using the f word).
He said, you'll always be in pain so take them. Don't worry about needing to come off them because you never will.
Don't take meds for nerve pain (amytripyline, gabapentine etc). Won't work as you don't have nerve pain and they'll mess your mind up.
And then said he couldn't really help me.
The above sounds shit but it was the most honest and useful advice I've had. Anyone else I've seen have been wittering on about spoons, and doing less (not a bloody option!!) and not working (def not an option!!) and equally useless drivel that didn't help me.

While I was in pain undiagnosed, I always imaged i was ignored and the issue was simple and would be fixed. So once I finally got someone to listen, I actually thought: "hey won't be long and it will all be sorted".
I was so shocked when I found out this wasn't the case. I don't think I've been quite myself since.

Nice to see I'm not alone in thinking spoons and that stupid 12
Step chronic pain program where you have to "accept your pain" is a load of crap!!
Thanks for letting me rant here 👍

[quote Navilana]@Becca19962014 that is soooo wrong on so many levels!!! I really hope you filed a complaint against the assistant? What vile behaviour [/quote]
I did. But I had no witnesses that were independent so the response was I'd "misunderstood"

@Rae36

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.

I've got RA myself and ooh, I would just love to tell people exactly where they can shove their turmeric! The mindfulness and the adult colouring books can take a similar route

Waves to all creakers!

@Rae36

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.

I was diagnosed at 16 with RA. I am 30 now and have already had 1 hip replacement. I have a call on Tuesday to discuss next steps for my other hip and both knees. Even with this people still don't take me seriously about my pain or shitty life quality because 'you're so young'

I went through psychotherapy to find out why I "didn't want to be well" - by choice, I paid for it. Because I was desperate for the CRPS to be over with and to be able to continue in my career (I was losing functioning fast and desperate not to end up on benefits reliant on people believing me after a lifetime of being called a liar).

Months and thousands of pounds later she said I had depression and PTSD, severely and in her opinion extremely likely it was organic. I flipped at her. Really lost my temper because it took me decades to get to a point whereby I agreed it was all me making shit up and she sat there and said no. Days later in specialist unit in London I was diagnosed with CRPS, one of the worst cases of EDS they'd seen and dysautonomia. I didn't believe them either. I demanded every test they could do including psychosomatic test - which was an arrogant dr who accused me of wasting everyone's time, and really upset me. Then retested. The following day having not slept in tears I told the consultant I was sorry for wasting his time but could he find someone to help me to stop wanting to be ill. His face was one of and he explained the psychosomatic testing was pushing a persons buttons for about four hours and then retesting to see how my condition differed and it was within the "normal" range, he then told me I did ask for him to do it. Which I had. I just didn't know what I was letting myself in for!

So the diagnoses stood. But before I left he said I wasn't to expect to be treated any differently because you get assholes in every professions, especially medicine and they're arrogant assholes and are not going to suddenly change their minds.

In my mind these were world class specialists (which they were!) and no one would question them. Well they did.

Incidentally I did applogise to the psychotherapist - her response? She expected it given I'd gone through so much trauma with medics during my life and it had cost me mentally to get to the point of "accepting they were right". Except they weren't and it was devastating.

You'd think after decades of being bullied by Drs about being a liar I'd accept my diagnoses but it was really hard, especially as two years later I was forced to give up work and gone downhill ever since, especially the last with zero help at all.

I've had osteoarthritis since I was 30 (well diagnosed then) no one accepted it formally until the specialist confirmed it. Even now I get told I'm just being a bit silly.

I do however, know of others in the same position. A friend (someone I met in hospital with EDS) turned 65 in hospital eighteen months ago and suddenly was offered lots of help and resources for her osteoarthritis she'd had since she was 40 and she was absolutely livid about it! Literally overnight her care changed.

I can relate to so much of this! I'm in a good place with my pain now but the thread title attracted my attention.
I so get it!
-being disbelieved
-the pain being put down to previous mental health problems that were totally unrelated

• being told to keep on taking medication that had more side-effects than benefits

-being told to "just stop" pregabalin which led to horrible withdrawl symptoms, when I should've been told to come off it gradually -being told that I "definitely" needed certain treatments, & then being denied them because they couldn't be funded -getting told off for not getting better after certain treatments had failed. -being told it was all in my head & all I needed to do was think the pain away -not looking like I was in pain -feeling a fraud because I managed to hold down a job (not very efficiently) & care for my children (if plonking them in front of CBeebies counts) -feeling guilty because I've never had a diagnosis & I really wanted to be told, "You've got X"because I just wanted to have a condition that other people could understand. -being told my pain couldn't possibly be a 7 or whatever.

I could've hugged the consultant who actually a knowledged how hard it was & who came up with some useful stuff to try, & the physio who explained what had gone wrong & why I hurt so much.

I seem to have missed out on the spoons thing. I can guess what that's all about

Good luck to everyone, it's a lonely old road sometimes.

@Becca19962014

I've had osteoarthritis since I was 30 (well diagnosed then) no one accepted it formally until the specialist confirmed it. Even now I get told I'm just being a bit silly.

I do however, know of others in the same position. A friend (someone I met in hospital with EDS) turned 65 in hospital eighteen months ago and suddenly was offered lots of help and resources for her osteoarthritis she'd had since she was 40 and she was absolutely livid about it! Literally overnight her care changed.

My hip was replaced at 27 due to the oa caused by ra. It annoys me terribly that people cannot accept it isnt just a disease the elderly has

I'd just like to add how much I hate the fucking "Spoons" crap.

Yes please, just somewhere to come and vent without being made to feel like I'm playing the victim or just trying to explain to people who just really don't understand

@MedusasBadHairDay

I have some wide handled cutlery for when my hands dont want to function. You can also buy tubes of foam that you stick over regular cutlery. I brought my cutlery from Amazon but if you have an independent living type shop where you live, they can order it in.

Oh and I have fibromyalgia, chronic migraines, cluster headaches, and trigeminal neuralgia

My hip was replaced at 27 due to the oa caused by ra. It annoys me terribly that people cannot accept it isnt just a disease the elderly has
I don't have either condition but I was 34 when this crap started (nearly 50 now). Kept getting told I was too young to be in pain. Or that because of my age & the fact that I was female the pain was probably all in my mind.
You can't win.

It took 8 years, & a very persistant GP to get an explanation for what was wrong. I still don't have a diagnosis.

I think people think I'm weird because I'm off all the medication & I don't talk about it anymore. The thing is, the medication didn't help, I actually feel better without it, & there's no point going on about it. People rightly complain about having headaches or pain from injuries every now & again & I think, "I have that every day, but you'd soon get bored each time I mentioned it." So half the time nobody knows.

But that's just me. Everyone's pain & their experience is different.

And if gripping just isnt happening you can use a scrunchie to hold it on your hand. Or a company called active hands sell gripping aids if you need a bit more.

[quote fuckoffmrtumble]@MedusasBadHairDay

I have some wide handled cutlery for when my hands dont want to function. You can also buy tubes of foam that you stick over regular cutlery. I brought my cutlery from Amazon but if you have an independent living type shop where you live, they can order it in.[/quote]
Thank you that's really helpful x

With the spoons thing, in the early days of my body falling apart and realising there was no easy fix it was really helpful. It taught me to pace myself in a way that telling me to pace myself didn't. So I appreciate it, but it is a simplification of something far more complex.

Chronic back pain here after accident six years ago. The worst thing is never being able to stop thinking about it. It's particularly bad at night and there are dark times at 4am when I wonder how many painkillers I can get away with taking to completely knock me out. It's truly miserable

Agree with the grief and guilt. I used to run marathons. Now I can't walk up the stairs. My 7 year old is not getting the sane quality from me as my older 2 did. Mapping in the afternoon while my kids are on screens.

To be fair the grief is the worst. I miss running so so much 😭

Also explaining to people and then next time you say in passing. "Oh I'm struggling today" and they say "oh what's wrong?"

My nearly 80 year old fil fitter than he and telling me I have yuppy flu.

This is a great idea!

I think a night pain thread be very helpful if we get a board. It’s lonely at 3am knowing you have to get through the coming day, and you have no idea how you can do it all over again.