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Sooooo frustrated....again

Posted , 17 users are following.

IssyR
IssyR

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

25 Replies

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  • Anhaga
    Anhaga IssyR

    Posted

    I define "stiff" as some difficulty in moving because it hurts. Your doctor has NO IDEA what PMR feels like.  It certainly is not the stiffness one gets from not moving!  Most of us have had to give up activities we enjoyed because PMR made it impossible to continue.  If the prednisone is not controlling that debilitating pain, then lowering your dose certainly isn't going to do any good.  Is there any way you can get some time off so that you can have a proper rest?  As for physical activity, I personally feel a lot better when I have my daily walks and do my exercises, but I have the luxury of having all the time in the world to do that.  If you can get some time off and get your pain under control, what do you think you might be able to change that would help you continue to recover?
  • holly28923
    holly28923 IssyR

    Posted

    I would find a new doctor.  I had a rheumatologist tell me it was not PMR which lead to an additional 11 months of expensive tests and pain, including a spinal tap.  He then told me to get a second opinion, so he would have someone to agree with him.  I did, liked the new doctor and she is now my Rheumatologist.  She agreed that I did have PMR.
  • IssyR
    IssyR

    Posted

    Thank you all sooo much for all your support, I'm not sure what my next move is, i was thinking i'd write him a letter...not sure if it'll do any good, not sure anything will. I've been with the same practice for 25yrs. I've seen him exclusively over the last 2yrs as it was him who first attended me at home when i took ill with pneumonia and pleurisy and after the operation to remove a rib and scrape out the poison i felt it better to keep to a doctor who knew exactly what had happened. He has been very nice but it took me til about 2mnths ago to realise he'd already made his mind up the stiffness pain etc were 'in my head' and to realise he very seldom actually answered the questions i asked.....years ago i sent a letter to one of the other doctors who had been soooo patronising i couldn't let it go past. So i don't know if i'd be seen as 'trouble' in saying that i don't actually have to remove myself from his list as all i'd need to do is start making my appointments with another doctor in the practice...i don't know i'll have to think about it....Aaaaaarrrgggh...
    • Anhaga
      Anhaga IssyR

      Posted

      Sometimes on this forum people are recommended to print off a paper which is designed for doctors, which they can then take to their own physician.  I can never find the page where these things are listed, but if you can, or someone else can get the link for you, you might find it a useful thing to give to your doctor, and perhaps he'll be less inclined to dismiss your concerns as he might if you write a letter.
    • EileenH
      EileenH IssyR

      Posted

      That was part of my problem, I wanted continuity of care so I usually saw the guy I liked and got on with - just as well as I saw him rather often at time but it did not a lot of good. However, had I seen one of the women it would have been recognised far sooner as she'd had more experience or different lectures during her training. But she was part-time and had been off on maty leave. When I'd responded so well to the short course of pred a patronising rheumy gave me and he wasn't interested, it was her I saw and she agreed immediately that the history and response to pred = PMR as far she was concerned.

      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
      EileenH Anhaga

      Posted

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      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
      Juno-Irl-Dub EileenH

      Posted

      Lord Eileen, that's a dreadful story. I would have been tempted to call the local newspaper or radio station . . . .   J
    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      It's very difficult when you are employed by the same company that is letting you down! His colleagues at the hospital saved his life by starting the process the GP should have started a couple of weeks earlier - one sent him for the chest x-ray that should have come after 2 lots of abx. Then they took over - the senior GP partner was a prat who wanted to play golf and have everyone pulling their forelock and he didn't like it. They turn up everywhere. And that sort of top-down management has many effects - mostly that the good people go elsewhere. We survived - and know who to thank.

       

    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Mmmm .   Old saying " what goes around comes around " comes to mind. 
  • febes
    febes IssyR

    Posted

    I seem to be so lucky that I do have a great doctor that listens to me and how I am feeling. I am reading that there are a lot of blood tests and other tests being done. I have had an initial blood test and then another one 12 months later just to see how things were, and that is it. My Doc adjusts my Pred on what I tell him. So IssyR I feel for you I wish you all the best. I can't imagine how frustrating you must be feeling 
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