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?

Well I hope you’re the manager of my GP surgery
I don’t think you are though because I’ve read the reviews on mine and any review that isn’t praising them has a rude reply.

I'd be tempted to put a complaint in to the surgery.
I had a gp say a similar thing to me years ago. My symptoms and illnesses weren't as serious as yours, he said "you're like an old woman, every symptom I mention you say you have". He went off with stress a couple of months later and never came back to the surgery again.
Make sure you don't see that Dr again and try to ignore what this one said. Some of them seem to think that if their idea of treatment doesn't get rid of your symptoms it must be in your head.

Haha no I’m not unfortunately. I have however done lots of training with GP’s on trauma informed practice and accurate record keeping. There obviously needs to be more.

That's totally disgusting and I doubt a GP is qualified to make that diagnosis anyway. (I've worked in the NHS)

There is a fabulous surgeon on instagram as well as her hospital work! She talks about genito muscular syndrome of menopause and often discusses how our rotator cuffs go on a whim. I'll try and find her name.

Solidarity ♥️

You need to see another rheumatologist who is competent in diagnosing psoriatic arthritis, it is very common for nothing to show in blood tests.

I had a nightmare getting diagnosed which took 2 private specialists and I had preciously worked on a research project in a rheumatology department back in the day on a RA project so knew the score. I couldn’t even get referred to rheumatology on the NHS.

I'm sorry you are going through this OP. But it is not an uncommon experience. I had serious gastrointestinal issues as a kid, and because they couldn't work out what was wrong, they put in my notes that it was "psychosomatic". Of course we all know there is a mind-body connection and anxiety can worsen or cause gastrointestinal issues, but they used it as an excuse to dismiss me and not even try to work out what the problem was. I ended up veering towards alternative medicine, where I have not only found real solutions, but also, the practitioners actually listen to what I am saying and believe me. I am not sure that this aspect of the medical profession can be fixed. They have knowledge gaps that they compensate for by dismissing the health problem as unreal or imagined.

I fully agree with this! I'm a health care professional that works within the management of long term conditions. It may upset you to hear, but there is definitely a personality they comes with long term conditions, and as a hcp I can identify this within approx 2 mins of meeting a patient. The pain you have is not made up, it is extremely real and living with that day in day out with what feels like noone is taking you seriously understandably leads to 'personality Syndrome' (not that I have ever used those words!!). Pain is the brains way of providing protection - eg. Don't move that way, I'll let you feel the pain so you don't do that again - hence when you hear people saying things like 'its in your head' people think they are saying they are making it up, or it's mental health that's causing it - but that's not the case at all.
However when you are stressed/anxious/low your pain will be worse, and understandably people who live with chronic pain are often stressed/anxious/low (if they weren't, I wouldn't be in a job!). These are common personality traits that people pick up. What they should be doing is offering support, advice treatment holistically on the management of the pain. Realistically it's unlikely you'll be cured of the chronic pain, however holistic management can support you to live well with it!
The GP has documented this in a horrendous way, which has obviously caused distress, however I imagine it has not been meant maliciously at all (but I know most will disagree with me!)

A family member in another country (with advanced health care) has just been diagnosed with either Rheumatoid or
Psoriatic arthritis probably tge former, but as you have psoriasis elsewhere perhaps you are affected by the latter. It sounds as though you should see a top Rheumatologist.

I am sorry for what you have been through.

This AI is a breakdown of tests for Psoriatic Arthritis. ( I don’t know if it is all correct but it must give some pointers.)
https://www.google.com/search?q=hiw+to+test+for+psoriatic+arthritis&rlz=1CDGOYIenES868ES869&hl=en-GB&sourceid=chrome-mobile&ie=UTF-8

You can ask for all your records.

Thank you all so much I feel like a weights been lifted off my shoulders.
I’ve honestly been thinking to myself maybe I am just a bit mad and I’m overreacting to that comment because of it, after all these people are professionals I’m not. It’s really messed my mind up.

I’m going to complain. I’m going away for a month on Saturday so I’ll ring and ask for the practice managers email.

Doctors have gaslighted me about my medication induced neurological involuntary movement disorder called tardive dyskinesia over the years, that was caused by an off label antipsychotic prescribed for severe insomnia and anxiety after a head injury and post concussion syndrome.

I saw 5 different neurologists before one confirmed that I had my movement disorder.

I'm really sorry, OP, that doctors have treated you so badly. It's awful when they attribute physical symptoms to mental health "problems". I understand, ive been asked by one neurologist if I'd ever had any trauma that might have caused my movement disorder 😢 (!) I'm not disputing that trauma can't be damaging to health. (But obviously mine was definitely caused by a medication).

I think you need an advocate. you say you have mh issues - do you belong to any organization who could send someone over to help or advise.

But that Locum put her in the past - start from now - good luck

Agree about the CRP testing if it’s inflammatory. I was relieved when the blood tests showed inflammation as it made sense why I was getting the pain and swelling but if you are anxious you might be feeling the pain more. Anti depressants especially ones with an anti inflammatory effect might help you.

Sorry to hear op, sounds soul destroying. May i ask, how did you get to read your medical notes?

I know someone who has this from antipsychotics, her legs jump like she’s been bitten and her body twitches and jumps they’ve said it was drug induced Parkinsons. She’s only in her 30s.

I would be furious OP. I would visit the doctors and ask to speak to the manager. Explain in a calm way what has happened and how it has made you feel. Ask to be referred again to a specialist! So sorry.

I would contact your practice manager and complain, and demand the comment is removed from your records.

I did this about 3 years ago. My son and I were very ill with flu and after a week of struggling I rang to try and get antibiotics for us on a Friday. I was told to ring back Monday if we were still poorly. Sunday we both still were struggling so I rang first thing Monday (Son was still asleep) to be told they were so busy they could only deal with children not me. They said a Dr would call back for my son.

Shortly after, my son woke up and said he felt a bit better and looked much brighter. 2 minutes later the Dr called and I said "My son has just woken and said he feels a bit better but I feel awful still" She said the call was for my son and not me and refused to give any advice.

A week later I was very poorly with a chest infection and tried again for antibiotics. A different doctor said I should have had them a week ago!

I checked my NHS record and a note from the first Dr read "Rang for an appointment fraudulently saying her son was ill to get treatment for herself"

Suffice to say, I went absolutely bat shit!

I asked for a patient summary because I was looking the evergreen app, and there must have been a glitch because I saw a page with notes on I hadn’t seen before and saw that one. Then it vanished five minutes later so I asked for a patient summary. I got it through the nhs app.

I don't have any advice but just wanted to share something with you OP - after a car accident (she was passanger) my friend suffered a back injury & ongoing back pain issues. her doctor wrote her a letter of diagnosis (for some insurance or another) stating she had a "phantom arm growing out of her back and it was causing her pain issues". Serious WTF territory (and yes I read the letter myself with these very own eyes)

This is so awful to read. To be in so much pain and to be basically told you are crazy. Don't downplay what is a real illness. Stay calm and assertive. Maybe take a good friend/relative for support. They might feel less comfortable telling you you're mad if there's someone else present.

You are joking!! That’s shocking did she get the insurance?

It was s few years ago and in NZ where they have a public accident compensation scheme. Yes she did get something eventually, but what she really needed/wanted was surpport/medical investigations with her back injury, and she had to sort that herself. It caused pain the rest of her life.

“It may upset you to hear, but there is definitely a personality they comes with long term conditions, and as a hcp I can identify this within approx 2 mins of meeting a patient.“

I am concerned that a HCP would make such a statement. How on earth can you identify someone’s whole personality in 2 minutes? Considering groups of psychologists, academics and psychiatrists can barely agree on what personality even IS, I really doubt the validity of your statement. It reads like you are labelling and stereotyping your patients. People experiencing chronic pain are not a homogeneous group with the same personality type. There is so much difference in how pain can be understood and treated depending on the cause of it; whether it’s caused by inflammation, autoantibodies, CNS dysregulation, connective tissue disorder, cancer, repeat infections, musculoskeletal disorders, or a thousand other things.

The point is that people need a medical diagnosis and to be taken seriously, rather than inferences be made about their personality and ‘symptoms’. There needs to be a holistic approach, based on evidence, understanding and collaboration.

I don’t have an advocate, I could do with one I’m not good at standing up for myself against doctors. And I know they close ranks and flag you if you’re seen as difficult so I’ve always just accepted what they say even if reluctantly and not complain.

Have you ever had iritis by any chance? I was diagnosed with ankolysing spondylitis very quickly after the onset of joint pain having previously had iritis and tested positive for HLA-B27, despite no evidence of inflammation on X-ray or MRI. I think it helped seeing a private GP and getting a referral to a private rheumatologist, so if you can afford to go down that route, I would. Once I had a diagnosis, I was referred back to the NHS and have received great treatment from the rheumatology team ever since. Given that you have psoriasis, psoriatic arthritis is perhaps more likely as PPs have said and I’m surprised that hasn’t been considered already.

I don't think there is a medical or psychological illness called 'chronic pain personality syndrome'? I mean health anxiety? Munchausen's?

But what do they even mean by 'personality syndrome'? You have a personality that gives you chronic pain?! That makes no sense.