To think I shouldn't need to be a Performing Poodle to be believed?

[WinterBones]

Been to the GP's Physio this morning, i have a chronic back condition that's been causing me pain for 26+ years, and in the last 10 its been getting progressively worse, i'm in constant pain, use mobility aids/wheelchair. I'm waiting for a second MRI/Referral to the Ortho/MSK team to find out where i'm at.

While i'm waiting, i'm suffering more and more pain, so in the last 12 months have been asking for help, the last fortnight its got REALLY bad, i'm in tears, can barely sleep, my moods bombed with it all.

Today the physio more or less fobbed me off, referred me to pain management clinic, and commented in my notes that i'm not outwardly showing signs of pain and offered zero other help.

Are they really expecting someone who's lived with chronic pain for 26 years, to come in acting like a limb is falling off when their pain increases? On the pain scale i live daily at a 5-6, and its currently more like a 7-8, but i shouldn't need to be screaming and making 'oooh' and 'ouch' and grimace faces to an experienced Physiotherapist for them to believe me that it fucking hurts.

It's well known and documented that people with long term chronic pain don't 'display' pain the same as other people.

AIBU to be pissed that apparently i'm going to have to 'perform' my pain to get any further help?

We *my partner and I, both women) have found NHS physios to be useless.

If you can afford it, find a private one - they'll take you seriously.

You won't. Pain clinic is the best place for you and they are well versed in chronic pain for you not to have to perform.

Not entirely the same scenario OP but I'd been transferred from ICU ( been on there EIGHT weeks) to a (dementia I'm 31) medical ward. I was asking and asking for prescribed oramorph as I was in agony and the nurse came round "prodded" my wrist and he said well you didn't scream them so you can't be in that much pain so no you're not having any.
I was on that ward for 3 months.. it was utter, utter hell.

I found NHS physiotherapy useless as well, didn't help at all

I’m really sorry to hear this OP. Are you a woman? I only ask because there’s lots of evidence suggesting that women’s pain (and other health issues) aren’t taken as seriously by the medical profession. I can’t comment on pain clinics-not sure if they offer pain killers/physio or just strategies for managing the pain and maybe CBT to cope with any consequences of the pain on your mental health? It’s unfair and wrong but the advice is if you want to be taken seriously then bring a male (partner/relative/friend) to your appointments. I have tried this and, upsettingly, it worked.

I agree OP. I have been in constant pain for 8 years. There is no point in complaining, I have reduced my activity level to just walking, doing my very gentle physio exercises and watching my house get dirtier. So many things I can no longer do it is hard not to get depressed. I also think that at my age nobody wants to give me expensive drugs so I limp along on the cheap stuff that doesn't really work. I agree that if you can afford a private physio go for it. My nhs physio consult was a phone call. Finally, 3 years later I got a f to f. To be fair it was helpful.

yes female, and unfortunately can't even begin to afford private physio, nor do i have a male person to take to my appointments.. i'm not unschooled on advocating for myself, i have disabled kids so i'm used to having to speak up.

I'm just annoyed at the notes (i have app access to my gp notes) about not outwardly displaying pain.. he wasn't even assessing me for pain, he did a quick 3 point check for hypermobility on my hand/elbow/shoulder.

I don't have issues with those.. the joints hurt, but it doesn't stop me doing stuff, the main problem is my back and hips, but he did absolutely no assessment of those, so how can he say i showed no pain?

Can you go back and ask for a more thorough examination and say that you've not been properly assessed (using notes as evidence)? Have you engaged with PALs about this?

Only my experience but NHS physio seemed genuinely keen to help. Next appointment next stage if exercises. Same two weeks later then at next appointment I saw the senior guy who , in a polite way, threw me out. He might just as well have said you’ve had 3 appointments that’s your lot.
Again just my experience but pain clinics are even more useless. You may have a dangled carrot — mine was hydrotherapy—- but I had to attend 6 “ workshops” first. Hours spent listening to someone reading from a script in a monotone. I’ve had 16 year old students do better presentations. And the hydrotherapy never materialised.

But the physio did do something, they referred to the specialists in pain.

How do you know what your notes said ?

i have sent a feedback/complaint form to the practice stating it's unacceptable for him to state no pain showed when he did no assessment, and that i feel very dismissed. I'm not expecting much to come of it, probably because i also added a point about something else he did on my notes which i've realised i since misread... knowing them they'll ignore the other point too.

The OP has access to her notes as per post at 13:44

my gp practice is signed up to allow us access to our GP notes via the NHS app. so i can see exactly what he wrote about me, and all my referral letters and documents and x-rays...etc.

Urgh so frustrating OP! Could you do what a PP suggested and ask for another appointment and get PALs involved. I’m sorry you’re in a position of also battling to get the help you/your DC need. It’s so wearing!

Apologies regarding the notes, OP replied as I was typing my reply.

tbh, i find none of them understand how my pain works.

I have never claimed to be inflexible/stiff, i still have full range of motion, can bend over/touch my toes, but were i to stay there i'd be in agony within a minute or so.. which impacts stuff like doing my laundry.
I can't stand still for more than 2-3 minutes without intense lower back pain, my hip starts to lock... so i struggle to do the washing up, stand in a queue, make dinner.. i can't even stand and empty the fkin dishwasher without having to stop and lean on the counter or sit for a minute.
If i walk, i limp, badly, and after a few minutes my right leg tends to give out as my hip starts screaming.

Doing a quick 'can you do x' assessment of me is useless and gives them zero information, but they never let me explain that.

Funny how the physio who did a 10 minute walking/motion assessment for my blue badge noted immediately what problems i have, but these guys can't?

The problem with pain is that it's subjective so they will look for other signs, perhaps when you're off guard

I've sat in A&E twice with a child sett by the Gp with suspected appendicitis.

1. Gave pain 8/10, and increasing. Flinched visibly when they went to feel and shrieked at the actual touch.
2. Gave pain 2/10, let out a small sigh when prodded.

The paediatricians were completely correct when they sent the first away and rushed the second into surgery. The surgeon would have put them the wrong way round.
I was chatting with the nurses afterwards and commented on this and they said that it was noticed more the quiet signs that ds had. That he struggled to move quickly and he'd gone pale when touched, didn't want to eat, struggled to answer questions while moving etc which had all pointed to him struggling with pain.

So there is as aspect that yes you have to show them, but not in a performing sort of way. I suspect that might be more likely to get sent away.
In your case, you may be not doing those subtle reactions as you're so used it it. However referral to the pain clinic isn't something they do lightly, so it sounds like they do believe you.

I probably don't do the subtle signs. but i literally walked in, put my crutches down and sat down. he did the check of my hand, had me stand to check elbow and shoulder, and asked me to touch my toes, and then i sat back down.

In that instance, no, nothing was bothering me, it took less than 1 minute.

However, today i have been doing some laundry and the actions of getting it out of the machine, transferring it to the dryer, and hanging some on the airer, and folding the dry clothes have had me gasping, breath catching/holding, plenty of ipmhing and sighing and groaning, going 'ow ow ow ow owwwwww' while trying to tolerate the pain i'm in to get the job done, then sitting down while in tears through gritted teeth, and then panting until the pain eased off..

Currently sitting here shifting position with a pain in my back and side that feel like i have a knife stuck in me, and have so far cried twice from it.

I dont' feel a 2 minute assessment of me sat on a chair gives them an accurate window into what is going on, and i feel he should have done a physical assessment of my back to see if there is more going on than muscle strain from pain guarding of my lower spine.

They're there to help, not ask you what you think you need.

I appreciate the pain management referral, and yes he did recognise this is longterm and ongoing - and i will engage, but i've had a boat load of CBT that included dealing with being disabled and coping with pain, so i'm hoping they might do more than tell me its mind over matter...

Following on from my post ( the ICU one)
I've been under the pain clinic since 2020 ( I've been on ICU twice)
I have suffered from chronic pain ever since 2020 due to various ICU related injuries etc,
My pain consultant is fantastic - I am on 20micrograms relatrans weekly patches ( I was prescribed pregablin but my consultant took me off that and increased the patch as I was struggling with my weight ).
If the pain clinic is in the hospital - they are usually great however the ones in the GP surgery are usually Naff - in my mum's experience anyway

Once you have the referral, Complain complain complain - say all you’ve said here and ask if they’re satisfied there’s no element of misogyny

What happened to ‘the pain is what the patient says it is’?

apparently it only applies if you're a bloke.