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?

Perhaps you are only getting online access to historical clinical codes, and not the full historical record?

Why not ask, it would be interesting to see what response you get if you are happy to come back and share it.

I’m so sorry you’re in so much pain OP, and that you’ve been treated this way. I highly recommend you see another rheumatologist, even pay to see one privately if you can. I have psoriatic arthritis, and your symptoms sound almost identical to mine. The fact that you have psoriasis and joint problems makes this sound pretty likely.

I was told by the first rheumatologist I saw that I definitely didn’t have an autoimmune disorder of any kind and definitely not PA. Couple of years later, things had got so bad that I paid to see another one privately and was diagnosed with PA very quickly, apparently I am a ‘classic case’ and it should have been picked up before. I honestly think the first doctor was distracted by the fact that I’d just completed a course of psychological treatment for birth trauma. He was very interested in my mental health, which is fair enough because stress can absolutely cause an autoimmune disorder to flare, but it was clear to me that he thought it was mental health related.

Please keep seeking help for this and ask for a second opinion, once they’ve actually worked out what’s wrong there are very effective treatments available. The dMARDs I take combined with lifestyle changes have made a huge difference.

It’s awful to read something so unexpected in notes however I was recently listening to an interview with Gabor Maté, and he stated that rheumatoid arthritis is connected to psychological trauma. My Dsis has RA and I can see how this absolutely could be the case … He explains really well the connection between physical inflammation and depression and anxiety. It’s well worth having a look at the information that’s out there.

Screenshot it. (the comments) Or photo it, keep for records in case it 'disappears'. Then ask, in writing (email or letter) to speak to the Practice Manager in writing & copy in your MP. Ask for a proper investigation about your condition - this isn't acceptable, you deserve a proper consultation, not just a random 'Locum' 2 minute perhaps diagnosis? Maybe keep a diary of your symptoms? Good luck xx

I think it's Dr code for she's imagining it.

Not sure when your symptoms started but I had all sorts of chronic pain for ages and dx with osteoarthritis in hands and feet, but eventually I was struck down with pyelonephritis, kidney infection and when that was treated miraculously and lot of my symptoms including hand and foot pain disappeared.

I still have Chronic kidney disease but it's been improving and I have gone from CKD 3 to CKD2 which is more common and less concerning..

On the other hand, I think my husband must have something on his notes about imaging pain or low pain threshold BC he's been in agony for 3 years. He has stomach pain, not like IBS more gall bladder but all the tests came back negative or non specific. We reviewed his blood results through the app and alot show slightly raised levels but nothing to indicate a specific dx. He's gradually developed more symptoms but no tests find anything wrong. I am however 100% sure he's not faking it, and whilst I think he may be sensitive to pain, I do believe something is wrong. And I have started to go to appointments with him to say this when the start on their speal about imaginary pains.

Meanwhile it looks like he has a small bowel tumor, but in a totally different place to his pain so who knows if it's related. Waiting to see what they are going to do.

Oh and they said he's depressed, he said 'of course I'm fg depressed, I've been in excruciating pain for 3 years, I can't keep a job and we are absolutely broke, it's the fg pain that's making me depressed, not the depression cause the pain' and left.

Just wanted to share our stories so you know it's likely there is something wrong, you just haven't had the right tests yet and that you are not alone.

I wish you the best.
I'm presuming they've checked for stuff like anaemia and thyroid.

I am so sorry this has happened to you. I agree that sometimes it's better not to know - the power rests very much with doctors in these situations and it's easy to inadvertently make it worse. In the long term, we need more transparency about what gets written about us and to be able to challenge it.

@littleMillie

I hope you've got some ideas from this debate about how to get your health issues properly treated and to get some closure from the feelings the unnecessary comments in your notes have engendered. Go to any meeting with as much info as possible and in chronological order; also make clear what it is you want going forward. Take someone with you if you need to. It's important to bear in mind all the possible outcomes of complaining including that you may not get a positive response. As others have said, changing GP or seeing a specialist privately if possible may be helpful.

Thanks again for the responses you’re all lovely taking the time I’m taking everything onboard.
I’m going away for a month today visiting family so I’ll ring the practice when I get back, hopefully I’ll get an appointment with the manager and if not I’ll ask for the email address.
I’ve tried so hard not to be “that patient” and now I am anyway.
I’m definitely changing surgeries and I’m tempted to explain myself to the new surgery when I do, because you hear of people going from place to place seeking treatments and they’re flagged. I’d bet my life the majority have been dismissed and marked down as something they’re not.

My records show me having vaccines 20 years before I was even born

Don’t change surgeries over this until you have got it sorted out. Your new surgery won’t know you, and if it’s right or wrong and, cannot simply remove something historic from your notes. Sort it out with your current surgery and then decide if you want to move.

Thanks, I will I’ll wait and see what they come up with when I go.

I don't understand. If there are scans, can you not just point to them and view them with the doctor?

How old are you? It may be a hormonal thing in perimenopause.
https://www.lscft.nhs.uk/services/service-finder-z/community-pain-service/perimenopause-menopause-and-pain

I find at times in my cycle my ligaments seem vulnerable and I easily pull a muscle.

Sounds like something my son has contracted in the Caribbean, initially food poisoning but attacked his immune system. Affects his joints, similar symptoms. May reverse eventually but until or unless it does it's forever. Challenge your notes, you have a right to put your case.

Also Eosinophilic Fascitis -very rare but a possibility; many Drs know nothing about it. Ask for referral to Royal Free if in UK who are the experts on this 💐

I'm sorry you've been enduring so much pain and that you were treated badly by those doctors.

Have you ever looked into seeing a Functional Medicine doctor? They look at root causes of illness and see the body as a whole. They often help people with chronic and autoimmune conditions. I think they could help you. All the best!

>apparently my issues are behaviour driven and I have a mental disorder.

Is that what chronic pain personality syndrome means? I think it means you have a mental health issue characterised by fearfulness and negativity. It's a symptom of the pain, not the cause of why you'd complain about the pain. Both the pain and the mental health issues would need treatment. Not impressed by the GPs lack of clarity to you though.

The GP also wouldn’t be qualified to assess this. No wonder there is so much distrust in health services. The lack of transparency and clear communication is not good enough.

Re the GP not being qualified to assess this.

Exactly.

ChatGPT: "Chronic pain personality syndrome" is an outdated and controversial term that is not recognized in modern clinical psychology or pain medicine.

I would start with saying that. This doctor is unprofessional and clueless about modern pain science. Ask for the "diagnosis" to be removed from your files.

Pain is either structural (organic) or functional (the brain has gone into a pain loop that it cannot get out of). Many people misunderstand the second type to be "made up". It isn't. It is the brain misinterpreting signals from the body, the nervous system becomes hypersensitive and the brain creates pain. That pain feels the same as pain from an organic cause and is just as real. Functional pain is very common, and this doctor needs training in order not to make things worse for those patients who do suffer from functional pain.

However, it seems that your pain is structural not functional. I hope you find the help you need.

Im sorry this has happened on top of all u are also dealing with daily.
Ive been in the NHS 45 years and have never seen a comment removed as it forms part of a legal record and is someone else's documentation.
I have however, seen a note added - for example to clarify/amend. I have to say that if its way back and there have been subsequent diagnoses, then on a day to day basis its unlikely to even register or be viewed by anyone. We barely have time to read relevant notes let alone the other stuff.
I can totally understand how you feel and would feel the same.
Whilst you are correct about labelling, I do feel confident that this ill judged remark will have been superceded by your subsequent diagnosis

I asked for a one word record to removed and the doctor (not who ever put it there) told me it had been.

Have you had specialised immunity bloods done? Like you I kept going back to the drs for extreme pain & fatigue. Would do routine bloods which all came back clear. My gp at the time has been amazing the previous year when I had really bad mental health actually told me the pain was all in my head! A month later I saw a locum who tried saying the same & I just burst into tears saying I might be crazy but I'm not stupid so she said she would do an immunity blood test which I'd never heard of. A week later the first gp phoned to say my rheumatoid factor was through the roof & I had to have hands & feet xrayed which I did. Went back the following week to be told they showed normal wear & tear for someone my age (for some reason xrays, scans etc don't always show up problems for me) & I had to really push for a rheumy referral. I have the inflammatory type, a year later I got diagnosed with fibromyalgia & chronic fatigue/me. Don't let them fob you off, it took me years to get a diagnosis. Good luck x

Make an official complaint, then change doctors

Raise a concern about the mental health of the author of the comment. They may be at end of their tether and if it's out of character for them that's even more of an indication of cause for concern. Don't forget to mention that what they've written is also at best a guesswork diagnosis that conflicts with previous x ray evidence!!!! To be redacted for that reason please!