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?

I'm so sorry about that. What a horrible thing to read. I'd have been devastated, too.

I'm not sure what you can do though.
Maybe ask to see the practice manager?

I'm not surprised you're upset, that's absolutely horrible. You've been suffering pain for all this time too. I'm so sorry.

I think I'd ask to speak with the practice manager. Tell them you'd appreciate a 20 minute appointment to go through your notes and to understand what's going on. It's really bad.

That's awful. Definitely contact them and make a complaint. What you've described does sound chronic (obviously not you) so how can you have any faith that they will help with an ongoing problem. You need people who are going to do their job, not avoid it.

It sounds like an auto immune thing btw, see if you can find specialists in that area if possible. Even if you have to pay for an initial diagnosis it goes on your record and then the GP will have to deal with it.

That's terrible - you have every right to complain. She lied to you - said there were no reports when there were. Dismissed you and made you feel vulnerable when you went to her for help.

Contact the practice manager. You can send an email to them - call your practice and get the email address for them. It might even be on the website.

You can also contact your local PALS (Patient Advice and Liaison) Service - I believe they can help with GP complaints too.

I'm so sorry you're experiencing such pain - it sounds very difficult.

Practice manager first port of call. They will advise you on next steps if you feel that to be an option you want to pursue.

I'm really sorry OP... women getting failed again by HCPs.

Thats awful . And a great way for the gp to not have to take any responsibility in helping you .
My dh had had arthritis in his feet since early 30s . But was dismissed so much when he went to the gp with really swollen sore feet. They kept saying it was just because he is on his feet a lot for work and just normal amount of pain .
Basically made out he had a very low pain threshold .
Until a different doctor sent him for xray and few other tests and it showed arthritis in both feet and knees .

Thank you so much for the replies.
It’s awful living with pain. I also have sciatica which I’m sure is connected to the lower back pain. I have never known anything like it I literally couldn’t move. It reminded me of that back pain when you’re giving birth.
My leg and foot feel fizzy all the time.
Haven’t had the sciatica flare up for a while thankfully.
I was going to email the practice manager but there’s no email address so I might write.
It just seems such a random and cruel comment surely they know how damaging it could be they forget they’re talking about actual human beings who are suffering.

It sounds like you have psoriatic arthritis. Have you seen a rheumatologist? I would also complain about the horrible doctor.

Just a thought which you may feel won't suit you, but I'm throwing it out there anyway...

I have bipolar and I can guarantee you that if I see an HCP because my leg fell off, they will ask me if I'm anxious and am I taking my medication.

Now I'm older and give much less of a shit, I use the Truth Technique:

"I don't feel that you're listening to me because you are distracted by my MH problem."

Or, if I'm in a shocking mood:

"Do you feel that there is an element of diagnostic overshadowing with your approach to this appointment?"

I find it helpful to speak slowly and perhaps at a slightly lower volume. This makes them put in the work to hear you, which is what you want anyway.

I did see a rheumatologist and he did tests. Said I have osteoarthritis as the damage is different to ps. I remember him feeling my fingers and hands and saying your tendons are all swollen but he didn’t add this in the report to the gp. Also one of the GPs refused to send me for scans on my upper arms where the biceps are. I couldn’t lift my arms and had to keep ice on them constantly it was agony, but anyway I went back and another gp sent me straight to the hospital and the rheumatologist did an ultrasound, one tendon was thickened and one had fluid under it and he gave me a steroid injection.
The rheumatologist sent me to a foot specialist and they gave me insoles but they didn’t work. They said it’s probably inflammation but when they do bloods nothing shows.

Funny you should say that because I do have anxiety and depression but I feel it’s controlled I take fluoxetine. I think they pounce on mental health problems and use it but I think being in pain and crap treatment from gps makes it all the more difficult.

I would see a different rheumatologist, Psoriatic Arthritis doesn't show up in bloods like 60 percent of the time. So sorry you're going through this. My husband has Psoriatic arthritis and the first rheumatologist basically told him he was an attention seeker, and it was just a bit of osteo, the second consultant was appalled and did a much more thorough examination.

I agree with posters re psa. Join the excellent Facebook group for psa and find a private rheumatologist who specialises in psa. Psa doesn’t show up in bloods much of the time and a good rheumatologist can diagnose from feeling your inflammation.

Jaysus thats awful @littleMillie .
Chronic pain is really misunderstood by some GP's.

Have you considered Bechets? Rare but symptoms sound like it’s possible

@ShaneWalshgirlfriendI went to my GP many years ago because I had severe tonsillitis. He had read my medical records and suggested it was psychological because I wasn’t coping with my uni course. I said ‘just look at my tonsils’. He eventually did and conceded I had severe tonsillitis and prescribed antibiotics.

All physical ailments are a figment of my all powerful mind unless actually addressed when they turn out to be run of the mill common physical ailments.

There’s no such thing as “chronic pain personality syndrome”. You are well within your rights to complain and have this expunged from your records.

Also I agree with pp’s that is sounds autoimmune and you need to see a different rheumatologist.

Definitely complain. That’s outrageous! My husband was diagnosed with rheumatoid arthritis and was in agony all Christmas with sciatica. He has really suffered.

I would ask for the comment to be removed and complain about the doctor you saw.

your symptoms sound very much like psoriatic arthritis which is an auto immune disorder! Have you had this ruled out?

Sorry I didn’t explain that properly. I did see a rheumatologist but when he did X-rays he said the joint damage between osteoarthritis and PA is different, and I had osteoarthritis in my hands and spine. The bloods they did they were checking for inflammatory markers and RA but there was nothing.
They tested again a few weeks ago and still nothing, I was actually disappointed as bad as that sounds when nothing came back because surely if things are inflamed the markers are there.
It is so frustrating.

That’s awful OP, I’m sorry you have been treated so appallingly when you are so ill.

Before asking to speak to them is it worth requesting a FOI report first? May cost you a bit but means they don’t have chance to delete anything? Means you can look at everything properly

I’ll look into that thank you.

Have your thyroid levels been checked? I have a lot of similar symptoms and mine are linked to my thyroid illness (autoimmune disorder).

Was CRP checked? I would ask for ANA/ANCA testing for autoimmune antibodies.