Sooooo frustrated....again
Posted , 17 users are following.
It's really frustrating not to be heard...that's exactly how i feel...i had an appt during the week after a huge range of blood tests, an xray for my chest and an ultrasound for my liver. So what came out of these tests is that my inflammation numbers are a bit raised...16 is that high?? and i have gallstones...i read these posts and everyone talks about the fatigue that goes along with PMR ...i am permanently exhausted, i work and i look after my grandkids at the weekend, my doctor doesn't agree that polmyalgia causes fatigue or stiffness as he asked me how my pain was and i replied that i was actually a bit sorer and stiffer than usual...his reply was the stiffness wasn't to do with PMR it was because i had to get moving..!! we ended up having a bit of a controlled rammy..he wanted me to come down from 7mg to 6mg pred and i said i don't understand why you'd want to reduce the pred when i'm telling you i'm sorer...to which he replied again it was because i wasn't moving AND because i'd had a LOT of physical and emotional turmoil over the last 2yrs and i wasn't acknowledging the effect my mental state could have on my physical state, I replied i felt i was quite self aware and didn't think that was the case...to which he said you can't say you're self aware, how do you know you're self aware that's just like saying you've a high pain threshhold no one can say either...I was in counselling for over 2 years until recently and think this has made me quite self aware...I felt sooo offended by the get moving remark..by the time i've done my working day i have no energy left for anything else...and though i love the kids dearly they are exhausting..i am so angry and frustrated with his attitude...i really hate to think what he's written in my records...sorry for whining AGAIN i'm just at the end of my tether...
1 like, 25 replies
Anhaga IssyR
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holly28923 IssyR
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IssyR
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Anhaga IssyR
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EileenH IssyR
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Since you can, try other doctors in the practice. Possibly ask other patients who they find helpful and broad-minded about thinking what might be wrong. If that doesn't work - can you change practice? You are entitled to do so if you can find a practice who'll have you, there is no such thing as a catchment area any more but the new practice has the final say.
That was what I had to do in the end with a practice who weren't interested in me and the children when my husband had cancer 21 years ago.He came home after every chemo with a suitcase of drugs - and he couldn't swallow the tablets. I asked for liquid versions and was refused, told they didn't exist - they did, I'd checked. So the next time he had chemo I asked the oncology nurses, he was sent home with the liquid versions and that was what the practice had to replace. They never forgave me for "interfering" - they'd not been very good at diagnosing his symptoms could be cancer until it was nearly too late and colleagues sorted it out - and took it out on us. For David's sake I tried to stick it out - until I was called to get my teenage daughter from school. She appeared to be very depressed, she had been under the local psychiatric unit for an eating disorder but had been discharged - I asked for an urgent appointment and was offered one 5 days later so I changed the request to "emergency", 5 hours would have been acceptable, it was nearly lunchtime and surgery had just finished. The senior partner was totally disinterested and told me it was time I stopped bothering him and got out of the practice - in front of my daughter. I took her to the psychiatric unit and found her former consultant - who said she was showing all the signs of depression but she'd have to be referred to her again, she could do nothing otherwise. I should go to the other village and see the doctors there. I explained the entire story - and was registered, seen and she was referred in about half an hour. The new guy was fantastic - he would call by any time he was passing to see how we all were, husband too even though at that time he wasn't his patient. He soon was!
If you don't have a good relationship it is pointless continuing to see a particular doctor. GPs are under a lot of pressure and don't have much time - I'm not decrying that at all - but when they are dismissing patient's problems as "all in the head" it is a sign of trouble.
EileenH Anhaga
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This is a link to the page Anhaga means - and she is referring to the "Bristol paper", written by rheumys for GPs. Not sure it will get through to this particular GP though - they have to believe the patient first.
The way to find the page without the direct link is to scroll to the top of this page where you will see, in red type
Home > Discussion Forums > Bones, Joints, Muscles > Polymyalgia Rheumatica
Click on the words Polymyalgia Rheumatica and it will take you to the "front page" of this forum and the post with all the links in is pinned so it is always at the top of the list. It also means you can look at the titles of all the threads by scrolling down the pages (all hundred and whatever of them!)
Juno-Irl-Dub EileenH
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EileenH Juno-Irl-Dub
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Juno-Irl-Dub EileenH
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febes IssyR
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