Shitty remark in my records by GP

[littleMillie]

I’ll keep this as short as possible.
About ten years ago I was hit suddenly with arthritis, some kind of inflammatory disorder that even affects the soles of my feet, genital psoriasis, exhaustion, tendon problems and spinal disc degeneration. I was in horrible pain and had to leave my job.
These things keep flaring up and the doctors have gone from diagnosis to diagnosis after bloods didn’t reveal anything specific.
I went in once and saw a locum I hadn’t seen before and as soon as I started to speak she said there’s nothing the matter with you I don’t know what you want people to do.
I was so shocked. I said if you look at the reports you’ll see what’s wrong and she said there are no reports. So I left in tears and I never mentioned it or saw her again. I felt vulnerable I believed her when she said there were no reports. Turns out there was, I was looking at my medical record recently and there’s a comment in the consultations part all it says is “(x) chronic pain personality syndrome”
I’m devastated. I don’t know who the comment was made by but I’ve looked it up and apparently my issues are behaviour driven and I have a mental disorder.
X-rays have shown degeneration of the spine, hand arthritis, my wrists swell, I’ve had a rotator cuff sprain just from folding a towel, and scans showed tendon damage in the tops of my arms and it’s agony. I’ve tried all the tablets they make me ill apart from anti inflammatories but I had a stomach ulcer years ago so can’t take them often.
What would you do about this comment? I’m going to be nervous to go back with anything now, I even downplay most of what’s been going on because it sounds too far fetched and too much for one person to be having.
Why would any doctor comment like that it’s so damaging and it’s dangerous.
I’m absolutely mortified and I know it only takes one remark for them all to view you as either neurotic or mentally ill.
Should I ask to have it removed? Complain?

A squeaky wheel gets the oil 😬 there is nothing wrong with self advocacy and speaking up for yourself for the good of your health. It’s years of internalised misogyny telling you to shut up and not be ‘difficult’.

My DM was a medical secretary later in life and read the most appalling comments made about her when she became ill in her 20s. A consultant had written in her records that she was neurotic, whinging and exaggerating her symptoms and concluded there was nothing much wrong with her. This had remained in her records for years, despite the fact that she was actually seriously ill with a rare and potentially fatal, blood disease that she only survived because her spleen was removed. I imagine it's the kind of comment doctors make when they are unable to make a sound diagnosis and suspect it happens more to women than to men.
I hope you get better treatment soon OP.

I’m so sorry you had to see that. I’d be crushed did you challenge it?
I honestly didn’t think doctors of all people behaved like this.

I’ve never heard of it either. The exact wording is (x) chronic pain personality syndrome.
When I looked it up I got a few different things, personality changes due to pain but mostly it was personality disorders. And the (x) before it means the comment comes under mental disorders.

@littleMillie it literally means that pain influences the person’s behavior and actions, usually somebody becoming more cautious and hesitant . Perfectly normal, but should be addressed together with the physical pain.
It is NOT a personality disorder, far from it. Not even remotely a psychiatric diagnosis . It just means pain is influencing the person’s life beyond the physical pain.

Sorry to hear that you are in so much pain OP. I would speak to PALS as the best way to approach this and lodge a complaint. I would raise that you have a diagnosis on your records which has never been discussed with you not have the reasons for such diagnosis been shared. If they cannot give you the medical reasoning as to why that is on your records I would ask for it to be removed.
i had a bad experience with my hospital with holding medical information from me about the seriousness of an illness. Now whenever I receive any hospital treatment I do an information request for my files for that treatment, check them and keep on file at home in case I ever need them.

I've had Long Covid for over 4 and a half years. Fatigue is a real problem (no - it's not just being tired and sleep doesn't help). It also makes you feel breathless even though oxygen levels are okay. It's a strange thing to have. A couple of weeks ago, in bed, my heart wasn't racing but it felt as if it was trying to bang its way through my chest wall. A bit scary. Called the dr the next morning and then wore a heart monitor for 14 days. Readings were normal. Dr suggested I try mindfulness
Drs do their best but they don't know everything. I just hope that she hasn't written anything stupid on my notes!

I knew before googling that this ‘chronic pain personality syndrome’ would be much more likely to be diagnosed in women. Can’t see a bloke turning up with those symptoms and effectively getting diagnosed with hysteria

No I couldn't challenge it because it's their opinion and because it's psychiatry. The stigma is still very great and mental health staff will be believed over those with a psychiatric label. I was prepared for this when I accessed my notes - the experience of the psychiatric system was appalling: abuse from staff including sexual assault against children in an adolescent unit. After surviving all that, I knew they'd write horrible and untruthful things about me.

X doesn’t mean mental disorder. It’s used for codes where one code has been superseded by another.

It's awful, I do wonder if there's misogyny here because women seem to get a lot of criticism.

This is terrible. As a mental health professional I see you and believe you. There are lots of us out there who challenge such practices and harmful power imbalances, especially where the psychiatric model of mental health is concerned. I very much hope you are doing well in life now, and that these things do change in the future.

Best way to deal with this is to ask for a double appointment with your usual GP to go through the diagnosis and clarify it for you.
If you are then unhappy - make a complaint.
There is so much speculation around what was written and why, it is more helpful to you to speak with your named GP first as they can influence what is on your record.
Do complaint if unresolved in the appointment- and when you book it -- dont even mention a possible complaint when booking, as the aim is for you to build a relationship, get the details and go from there. You may find you get the answers you need just from speaking to your doctor and explaining it was a shock and you'd like to understand it better. Best wishes.

Most of my opportunities were destroyed because it took over 13 years to be listened to and believed so much was lost by then. It was almost laughable; after all those years of being ignored about the 3rd question I got asked was had I ever been a prostitute! The cover-up by psychiatry and social services was quite amazing; they will do anything to cover up their mistakes.

It isn't all in the past either; you may remember Gaia Pope the young woman who went missing and was found dead. In her psychiatric notes it was written; "delusions of sexual assault" after she disclosed being a victim.

This is from the nhs

3.4.8 ‘[X]’ PrefixThese terms, such as those under ‘Eu…00 [X]Mental and behavioural disorders’, have an ‘[X]’ prefix. This simply means that the term has an equivalent code in ICD-10, the hospital coding system. The terms themselves are reasonable to use for recording disorders in primary care, the ‘[X]’ prefix is irrelevant for our purposes.

@AzureStaffy Yes I know the case. It’s truly terrible and things must change. Thanks for sharing your experience.

This is terrible. The world if full of shit people I don’t know how they sleep at night. I hope you’re doing ok.

This is a depressing read how many others have also gone through this. I’ve had this the last couple of years and my notes are littered with all sorts of nonsense and actual physical problems are dismissed as basically hysterical lady just compounding the problem each time.
I managed to get a job with a workplace private healthcare policy and the private drs being able to just listen to my symptoms and not be influenced by the notes massively helped get things resolved, but what a ridiculous way to have to get treated and looked at.

@littleMillie chronic pain personality syndrome is not a diagnosis. it just describes behaviour/attitude changes due to pain. its a side effect of pain, just like a limp can be a side effect of pain. It usually NOT a diagnosis, and certainly not a psychiatric ones. it just means that ghe physical pain also influences mental wellbeing (as you would expect with chronic pain!)

That’s just an example term. The important bit is:

3.4.8 ‘[X]’ PrefixThese terms, such as those under ‘Eu…00 [X]Mental and behavioural disorders’, have an ‘[X]’ prefix. This simply means that the term has an equivalent code in ICD-10, the hospital coding system. The terms themselves are reasonable to use for recording disorders in primary care, the ‘[X]’ prefix is irrelevant for our purposes

My usual doctor has just left, she was great she really listened and she knew something was going on and sent me for tests. But now she’s gone so I’ll have to see another one.
I like the idea though it might be better going in rather than complaining straight off the bat.

No - this term is loaded and based on the construct of ‘personality disorder’ which in itself is controversial, disputed by many prominent academics, psychologists and psychotherapists. It is rooted in misogyny and ‘hysterical woman’ tropes.

This locum GP was in no position to offer comment, let alone diagnosis, on the OP’s attitude changes and behaviour given they barely know her.

The OP’s concerns here are valid. I would not want that on my health records either.

@Plastictreees you are plain simply wrong. While i agree the name “personality disorder “ isn’t great, this one really just means that the pain is severe and negatively influencing someone’s life beyond “just” the pain.
GPs can’t win. this one literally acknowledged that the OP is suffering. but apparently they shouldn’t do that….

My dad had psoriatic arthritis and he was in AGONY. So this doctor is absolutely out of order and disgusting how she decided you have a mental disorder because you want help with the pain.

My dad had some hand x-rays done at hinchingbrooke hospital years ago which showed how severely inflamed they were, you could not see the gaps between the bones. He was offered an operation to try and make it better but he sadly died before this could happen (sudden cardiac death, not related at all) but has anyone recommended that?

@littleMillie - I would like to emphasise what this poster says.

It's not that you don't have chronic pain - it's that you have chronic pain and a personality disorder.

However, it's not necessarily that your personality has changed as a result of the chronic pain but that you may have had a pre-existing personality disorder. This article is a bit heavy duty (and US originated) but may be helpful - https://www.medcentral.com/pain/there-chronic-pain-personality-profile.

I do think you should get to the bottom of this for two (or three) reasons:

• first, you need to ensure that your chronic (and multi faceted) pain is appropriately diagnosed, recognised and treated;
• secondly, if you do have a personality order, what is it? What is its impact on your life and how can you manage it? and,
• thirdly, if it's all nonsense, the records need to be updated accordingly.