I have just had access to my GP notes, as in the 80s I moved around a lot and was told at one point that my notes had gone missing, then at my last surgery which I left around 7 years ago, they had me mixed up with another woman of the same name at the same practice.
I went the other day to the surgery where the clerical staff were really lovely, as it has taken quite a while to get it organised, and was given all my paper notes to look through first.
All OK, I found out that investigations were done into Rheumatoid on numerous occasions due to my pains and psoriasis in the 80s and 90s. These came back negative, so could be through psoriasis? .Hormone tests done, thyroid done etc as expected (this was all from records predating my current GP practices). There were a lot of investigations done, so as my notes were summarised by this GP when they moved across to them, really only the important things had been left in there, but always discussed and written into the notes in a non judgemental way (which is as it should be). And it pieced together a few things for me. Some of the GPs writing was horrendous though and totally indecipherable!
However when I came to the notes from my current GP practice (where I feel I have problems getting treatments and investigations), the first letter I came across - from the head doctor of the practice - was a letter referring me for CBT, with the words "this lady is rather hypochondrial about her symptoms"!!!!!!!!! Not Good!!!!
I can tell you now, I never had a copy of this letter at the time, and if I had seen it I would have steered clear of her afterwards, with that opinion - IT WAS BEFORE REFERRAL FOR DIAGNOSIS OF FIBRO by a doctor there who left to work in France soon afterwards, who was interested in the condition. hte good ones always leave the country.....
I haven't had access to the rest of the notes yet as they are on computer, but I am making arrangements to access them in the next few weeks. I haven't told them why, other than they know I have been mixed up with someone in the past. This other lady had mental health issues (like me, but different things to trigger) and also heart problems, so I need to see if this is clouding judgement, but that letter gives me reason to think that something may trigger a knee jerk reaction whenever I try to get referrals etc, when they access my notes.
I saw a new doctor a few months ago and he more or less told me I was "Someone who liked to see results".mmmmmm
??? What are other peoples OPINIONS, ADVICE and EXPERIENCES with this?
ALSO .....I am considering moving GPs. ??? Does anyone know if we are entitled to ASK GP practices what their general knowledge is on Fibromyalgia BEFORE we make the decision to join them?
xG
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Glenys
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Hi Glenys - I too was diagnosed as hypochondriac until I got my fibro diagnoses. Even though there's been several gp changes at our surgery, I still think that when they see my name down for an appointment that the docs heart sinks! Good Luck with getting an understanding gp,
Julie xx
Hi Glenys its an awful feeling when you realise that's what they thought, or think of you but you will always have first hand knowledge that you are not a hypochondriac. We use the strength of that knowledge in our pursuit for proper treatment and I am lucky now to have an understanding GP who will explain everything. With respect to asking the surgery if they have anyone with fibromyalgia experience before registering............... Why not!!?? You could end up changing from one GP to the next one I suppose a good way to prevent that is by asking.
However half the battle with fibromyalgia is about education and we have to help our GP's understand it too as none of us are identical which in my opinion makes it difficult to understand.
You have full empathy from me 'treat like a hypochondriac too' Glenys and I wish you well in your pursuit
I have not had exactly your experience, but I have known a huge difference between two doctors in the practice I use. One of whom was completely and utterly unsympathetic to anything I said, asked or did, he just gazed at his computer screen, wouldn't make eye contact, and I got the feeling he'd really rather be out on his boat than sitting talking to me. He then did something completely unethical and talked about me with someone I knew who wasn't a relation and had no business at all to do what they did, and as a result I insisted on changing doctors ! I could have had him up before he medical council for what he did, and he knows, it, every time I see him either in the surgery or in town he tries to smile, and I just ignore him. Out of bad though came not just good, but great, my current doctor who is much younger and far more knowledgeable takes me and my needs very seriously, he copies me in on all letter to consultants etc., and has even been known to give me a hug as I've left the room when feeling utterly wretched.
I think yes, you should look into changing practices or within the same practice and ask to be registered with one who has an understanding and interest in Fibro and other complaints you have.
One thing I think people tend to forget is that doctors are there to serve us...... not the other way round, I know it can seem different, but they, as service providers should give us the type of treatment we need and deserve !!
Here endeth my rant for the day
Foggy x
I admit I am a hypochondriac or someone who has health anxiety. For some reason they always seem to link fibromyalgia with mental illness. And sometimes people with health anxiety do get real health problems, as in my case. Remember when you see you GP you are the customer. And yes ask him or her about their views on fibro. Don't be intimidated, they are not Gods. Take care everybody
The worst thing is, I work in a hospital, and can always have a good laugh with some of the doctors on the wards. That is in different circumstances and I don't dream to ask them about health matters at work - I understand that if I was a hypochondriac I would be badgering them all the time!
The definition of a hypochondriac is someone who has anxiety over their health for NO reason. We all have pain, discomfort, fatigue and stiffness to some degree, and it is natural with something so "esoteric" as fibro that we wonder if something else is wrong when we get new symptoms. These are GOOD reasons to get checked out, as in the absence of fibromyalgia, some of these extra symptoms can be life threatening.
A good doctor would find out, and not just pin everything onto the fibro. I swear at this GPs I could walk in to any of the doctors with a leg missing and they'd say "I see the ol' fibro is playing up again then, luv? Don't worry about it, cos the pain clinic can't do anything for you that we can't do! Its hurting is it? ahh you see this is how life is, and you have to put up with it....hop along darling!" I jest, not!
Yes I do have anxiety, and that is because I have symptoms of PBC, which led to my mum's death at 56 (I am 49) after years of being ill with fibro-like symptoms. I have been told (as they didn't find out till the PM) that she may have had a form of AMA negative PBC which 1 in 20 people with PBC get. As my AMA is negative, I feel it shouldn't stop me getting further checks. In the 80s when she died there were no access to MRI scans which would have detected it, but I have talked to the guy from the PBC foundation who has said I should be referred on, because of the family history, high cholesterol and symptoms.
However the docs just close off when I ask about it, and say that it is rare, and even that my mum could have died a week after her exploratory operation (where they looked only at the gall bladder) due to the anaesthetic! I give up.
You are well entitled to your rant, and I feel privileged to have allowed you to vent off like that - I have my uses Thanks for info! I think I will change GPs as soon as I have had my access to the notes, and a little evidence to show the PCT (or whatever it is called now).
Thank you Glenys! I realised it was for me, bless you
Foggy
I also work in a hospital as a mental health nurse. I now feel whatever I go to the docs with they will say its health anxiety. All this pain for over 2 years is apparently caused by that. I told them I wasn't stressed or anxious at the time, but to no avail. I think we now our own bodies.
I think it has become a health "Fashion", as it's always in the news. Everytime a condition gets fashionable in the press, the GPs latch onto it, as there is always a drug involved, and the whole media thing is led by the drug companies...
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