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?

Im sorry its awful but I guarantee you a lot of people's medical records aren't accurate i sometimes get letters from consultants and wonder if we where even in the same appointment. On the plus side drs very rarely actually read your medical records

Jesus Christ. I am so sorry this has happened. Why are so many medics so quick to jump to the conclusion that their patients are mad? And that if nobody’s bothered to look hard enough to find what’s causing someone’s chronic pain, it must not exist except in their mind?

Is the thinking that if science doesn’t have the answers after a handful of 7-minute appointments, then there must not be a problem in the first place?

I have an underactive thyroid, been on levothroxine for a good few years now. One blood test showed it was hugely under, latest bloods show it’s just over and I only increased by 25mg. They said just leave it for now and retest in 3 month.

I have a connective tissue disorder that causes what looks like OA in pretty much all my joints, because the cartilage is rubbish. I struggled with Drs wanting to deal with one problem at a time, asking what the biggest issue is and similar. There's lots of reasons why you might have pain in lots of places, they just haven't found it yet. Sorry you have had this experience.

Chronic pain personality syndrome means that your personality has changed BECAUSE you're chronically in pain (sorry for "shouting,y intent is emphasis on the fact that the pain is real and causes the personality changes).

Because then it is not their wheelhouse and they can fob you off with meds or self referral to talking therapy (I work in MH, seen it over many years).

OP, you must complain about this. Immune system problems are difficult to diagnose as they are often diagnoses of exclusion, rather than there being clear test evidence for them. But I would want a full explanation of why this note had been made, the evidence for it, and a second opinion on it.

I complained about a GP years ago - 2 very patronizing doctors told me my knee pain was 'normal wear and tear' and implied I was exaggerating my pain. Turned out I had a massive tear which required surgery. Doctors need to be held to account, as the notes from the first doctor meant that the second did not take me seriously.

But how it a GP at all qualified to assess someone’s personality allegedly changing? The OP has not spoke of personality changes, so it seems inferred at best.

I am a psychologist and I’ve never heard this term, sounds like a load of nonsense to me.

Jesus this is brilliant. Ill use these. Any time im ill or injured, its cos im fat.

I saw that as well when I was looking it up. There is no way any of the GPs in that surgery would know if my personality had changed as they never saw me before. I saw the same GP for over 20 years it was only the off chance I saw a locum.
Most of what I was getting was personality and behaviour disorders, and the (x) before the comment actually means mental disorder I was curious what that meant as well.

Have you looked at Ankylosing spondylitis, your symptoms sound similar to my sister, there is a gene test but you need to push for it. It took my sister 30 years to be diagnosed, she was told she osteoarthritis and rheumatoid arthritis and fibromyalgia in the meantime! Versus Arthritis is a good charity to call if you suspect this or psoriatic arthritis; they'll give you advice on diagnosis and treatment.

Doctors write patient notes each time they see you. The doctor you saw for 20 years might have recorded that on your notes. You can ask to see your medical records. Ask when this was first recorded in your notes and by who.

Psychologist here. i think you misunderstood the comment - its not at all shitty.
chronic pain personality syndrome is something correlated with painful conditions. It does NOT cause the pain, it isn’t a psychiatric diagnosis in any shape ir form. The pain is real, nobody doubts that.
However, people with chronic pain often develop protective behaviours that stay even if the pain is gone, and it is good practice to offer support. Helping them to overcome these behaviours (that can make the situation worse) if a good thing (could be physio, could be social support groups…). pain takes a toll well beyond tbe physical bit.

Women's pain is not taken as seriously as men's pain. We present differenly and they're only taught about men. We actually have higher pain thresholds as a result.

Also paracetamol doesn't work for 80% if the population. I don't understand why is prescribed at all.

I hope you can find some answers.

@littleMillie It is incredibly difficult to get anything removed from medical notes. The most you can do is ask if you can have your version of the consultation attached to the offending comment. But there is no right to this and it's up to the doctor. NHS doctors are incredibly well-protected and everything they write is classed as medical opinion. Any information in medical notes can be redacted so you cannot know what others have said or think about you.

Although this has been upsetting for you it's mild compared to what others have found in their notes with letters from psychiatric staff being the worst. My GP notes have letters saying I'm immature, inadequate, unemployable, attention-seeling and tell blatant lies. I wasn't believed about child abuse which left new generations of children vulnerable to being victims.

But it doesn’t sound as though the Dr assessed this, or any ‘protective behaviours’ she may or may not have.

You sound exactly the same as me, I suddenly got ill similar to how you did, and I constantly got fobbed off by the GP saying my bloods were clear.

I got to the stage where I couldn’t wash or brush my hair, get out of bed, dress, or cook a meal without help. I couldn’t drive my car as the pain in my wrists was so bad I couldn’t change gear, nor could I turn my head properly to see if the road was clear at junctions. In the end I went private, and was told after a few short examinations at my first appointment with the consultant rheumatologist that I had Rheumatoid Arthritis. I got put on meds and steroid injections and they have been a total game changer. Go private if you can. Good luck!

Make a formal complaint and don't feel apologetic about it. You need to do this to ensure that the inaccurate summary part is corrected and doesn't follow you around. The practice is required to have a complaints process in place and should explain what to do without giving you a hard time over it (actually they should give you positive support but let's be real).

I'm sorry you're having such a horrible time.

She might have but I can’t see it, her notes are pretty thorough and this one just looks like a random remark it stands out. And it was around the time I saw that locum I don’t know to this day what her problem was but even her tone was nasty I’ve never experienced anything like it. Also I don’t see why when I’m at the doctors why any of them would just leave a remark about a personality change. And the (x) literally means mental disorder

Loads of my .patients have crap like this in their notes. It makes me livid. I believe people when they say they have pain, why shouldn't I. I cant believe this outdated attitude still exists.
My own GP accused me of "drug seeking behaviour" in my notes but when I had my MRI it showed up horrific collapse in my hip and pelvis that needed urgent major surgery. Im fine now. I insisted it was amended and wouldn't leave the surgery until it was. Bloody cheek.

Have you considered Fibromyalgia?
Also some things might have occurred for different reasons . so the gp should not lump them all together. Well done for reducing the sciatica .

i am so furious you have been treated like this . It’s horrific .
I had problems with my gp and e mailed the practice manager . You should find the e mail on line . I’m treated well now .

Sorry to get on my soapbox but I believe this sort of behaviour and record keeping style is an abuse of power within a medical context. I am sick of women being gaslighted and their pain minimised and mismanaged. Patients have a legal right to see their notes, more people are becoming empowered to request their notes through the freedom of information act. There needs to be transparency and openness when speaking with patients, it completely undermines trust in the health system to see that a Dr has made a pseudo diagnosis you knew nothing about. Records unfortunately DO matter. They need to be accurate, not based on opinion and inferences. I say this as an NHS psychologist and senior manager.

YADNBU. I’m off now for a large glass of wine! 🍷

Really? That’s so interesting, when I first went to the rheumatologist he said in his report my RF was still borderline. I don’t know what it is now but even more interesting is the whole family have autoimmune diseases and my DD has rheumatoid. I’ve got psoriasis and hypothyroidism.
I wish I had the money to go private I’d do it.
Thing is I’m on anti epileptics so can’t take dmards. My poor dd though she’s really suffered I feel for you having that ♥️

40 per cent of rheumatoid arthritis patients are sero negative ie doesn't show up in blood sample. A female consultant rheumatologist told me that after I'd finally been sent to see her. It took over 8 years for me to get a diagnosis.

I'm on methotrexate now and I can say it's absolutely brilliant. Keep going back for a second opinion OP - that locum was talking shite.

Very similar thing happened to a close relative, doctor dismissed chronic stomach pain as functional dyspepsia. Now confirmed by endoscopy to be chronic gastritis. Not the same but this doctor caused huge delays in diagnosis.

There used to be a thing called the "arthritic personality", basically meaning miserable and crotchety. I have RA so yes I do get miserable and crotchety.