Doctors and their double standards

[Helzbells]

So after a week in which my diagnosis has been changed from anti-ccp positive RA to fibromyalgia and I have been told to go away and get on with my life and may be take up mindfulness or something as it's all in my head it has got me reflecting. I'm having to do this because I can't carry on the house work because the pain in my joints in May hands, knees and feet are so painful I've had to stop.

My diagnosis has been changed because my bloods show no inflammation, on physical exam the registrar tells me my fingers doesn't look swollen to him (though I can't get my rings on - he tells me I'm imagining it because I'm body dysmorphic ) but without these obvious factors even if my anti-ccp test if positive he cannot diagnose RA because he needs proof.

Odd then that he and his colleagues feel so able to diagnose it as psychological without a single shred of evidence. Have they asked for a mental health assessment - no of course not. Did they ask me for any type of medical history from me regarding this in the same way they asked a out my history of RA pain of course not. Are they qualified psychiatrists as well as rheumatologist no of course they aren't. And yet unlike their stance on RA they don't feel they need any evidence at all to make this alternative diagnosis.

Now I do firmly believe in psychosomatic illness and the powerful symptoms it can cause. There is an excellent book by a leading neurologist who specialises in it and it's fascinating. But I've been down this road before when I had a mysterious bladder complaint that didn't show on any tests (no because I'd actually trapped a nerve). I've seen a specialist health anxiety counsellor, a pain management psychologist and I paid to see a psychiatrist because I'm always open to ideas.

All three independently said I showed absolutely no sign of mental illness, anxiety, health anxiety or psychosomatic illness. All three felt I clearly had a physical illness that had at that point not been diagnosed. The health anxiety counsellor wrote to my doctor at the time and said given my raft of positive test results why was I being sent for health anxiety counselling and not being treated for my physical issues.

And yet today I find myself yet again despite positive blood results being discharged and told to put up with it as there is nothing wrong. A complete reversal of their opinion last year. But then of course last year I was newly diagnosed and not a problem patient who couldn't take her meds.

Ironically being left to cope with such awful pain and disability with no treatment might well be the thing that finally pushes me over the edge and in to insanity

[AgedCrone]

Can only suggest you Consult another rheumatology team.

Sometimes when things get as confused as your relationship with your present doctors is .......it's better to cut your losses & start again.

Hope you get some solutions soon.

[spzgirl51]

dear Helzbells

I have followed your recent posts and i can understand your anger with the medical profession? I have only had ra for about 3 years and last year I was given the diagnosis of fibromyalgia too? For which I was given a red leaflet in explanation and offered no treatment ? Which I have found unsettling. I still feel like a novice in dealing with pain issues from both these conditions?

My feeling is it is best to have faith in your own gut feeling as to what is wrong with you? Both fibromyalgia and Ra are long term conditions that ebb and flow with some weeks worse than other?

Why dont you keep a pain diary or if you have a smart phone? Choose an app where you can record how long you have stiff fingers and pain in your joints? And take pictures? Then you have something to show your gp when you request to be seen by a senior rheumatology consultant ?

Dont give up ? Stay strong? Doctors don't give out methotrexate and the like without good reasons? And ask your gp to query the outcome of your last rheumatology appointment?? Pain is real whatever the cause?

Good luck , I think you have been treated very badly

[Barb66]

I'm so sorry Helzbells - it seems to me if you don't present as a model patient you get rejected by rheumatology. What a great way to keep your success rates up! Like you I'm struggling to be believed although Im being treated with medication . How can you show anti CCP in your bloods and not have RA? I agree time for a second opinion - good luck!

[LizzieR]

Oh I'm so angry by this. When I was a teenager I developed stomach problems. After lots of investigations I was told there was nothing wrong despite all my physical symptoms. I was made to feel a fraud and this lasted for years. I even remember a doctor taking me into a separate room and asking me to fill in a questionnaire about whether my parents abused me... ( luckily I was level headed enough to laugh- my parents are wonderful) Now I'm 41 and they know that the muscles in my lower bowel don't work and I have intermittent ulcerative colitis in the upper bowel.

Hang in there, know yourself- get a new team and try not to let anyone make you feel a fraud. It's a corrosive feeling and like guilt is an emotion you don't need as you try and fight your illness. It is them that have the problem- instead of just saying they don't know what's wrong thry have to turn it on you.

Also, know that we all here believe you. Xx