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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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  • angela43016
    angela43016 IssyR

    Posted

    You are bound to feel the way you do! You know the pain you are in, it's very hard to get aggrieved with a consultant. My levels were very low the last time I saw mine but I am trying to get off pred so have opted for injections. YOU know how you feel so don't be fobbed off, do your homework and decide what you think is best for you. Ok, might not be the right way but we all have to have a say. I know it's hard but you also have to cope with the results. I wish you good luck, but don't think that you have no say x
  • dan38655
    dan38655 IssyR

    Posted

    It isn't clear to me what you meant as to how your working day left you without any energy.

    I think what the doctor is trying to emphasize is that you should be squeezing in a daily exercise period where the heart rate is elevated for a substantial duration of perhaps 40 minutes so as to improve circulation.

    PMR manifests as vasculitis, where blood vessels pass so little blood so as to cause cellular starvation of oxygen so as to become sore, as if from over-work.

    So exercise affects this primary symptom of pmr by the mechanism of vaso-dilation, countering pmr's own vaso-constriction of blood vessels.

    Again though, it wasn't clear whether your work day includes such vigorous physical activity such as to substitute for the sort of exercise that the doctor is recommending.

    I myself find that on the days where morning exercise isn't part of my day, that I may feel tired at the end of the day, but that some good late-day exercise livens me up to where it is a net improvement in my energy level. I do have to get started though, which is where having an understanding of such cause and effect is useful in motivating myself. So perhaps ther doctor is trying to push you in that direction, especially as later in the day is when the effects of pmr tend to be less noticeable and thus permit more pain-free exercise.

    • FlipDover_Aust
      FlipDover_Aust dan38655

      Posted

      I have to believe you are joking or you are incredibly lucky. I can't do ANYTHING. Just getting up and going to work is exhaysting and painful. I went from doing triathlons to a bed bound wreck in a matter of weeks and a year later things are no better. I'm back up to 20mg pred daily and still can't walk straight. Telling me to exercise would be like asking me to fly.
    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      I'm incredibly lucky because I have all the time in the world now to look after myself.  That situation is a bit depressing, too, but physically it has been a boon.  When I think for a moment that I can't imagine how people who are working, like you and Issy, cope I only have to remember what it was like for me when I was still working.  Like the day I had all of a sudden to call to a co-worker and ask her to take a pile of books from my arms because I was otherwise going to drop them....  I was lucky to work in a job where I could modify my behaviour, and at the time I thought I only had really painful osteoarthritis, but in retrospect I now understand how bad it was.  
    • EileenH
      EileenH FlipDover_Aust

      Posted

      I really think that your doctor needs to have a rethink Flip - needing that much to function at all suggests that it isn't "just" PMR that is causing the problem.

      In my case it was the pred that wasn't working for some reason - I'd been fine at just under 10mg and I got a new batch of 5mg pills (enteric coated prednisolone) that just didn't work - I also had some 2.5mg pills which were dispensed at the same time and 10mg of them worked fine, 10mg of the 5mg didn't. I was switched to Medrol and for a short time 10mg of that was fine too but then the symptoms started to return and the dose crept up. It got up to 20mg at one time and it did nothing useful unless I took it before I went to bed which then worked by mid morning - if I took it at 7am I couldn't move until mid-afternoon. The side effects were horrendous (weight gain, skin and hair awful and a lovely black beard) but as soon as my GP decided to try Lodotra, a form of prednisone, the only one available here, I had the same miracle effect with 15mg as at the start, the side-effects started to disappear immediately, slowly but surely, and I have been able reduce steadily to 5mg.

      This is something that isn't appreciated though - either by many doctors or often by other patients. We are all affected by PMR differently and we all respond to the medication differently, in some ways it can almost be as if we have different diseases - and maybe we do. Autoimmune disorders of all sorts have overlapping symptoms - the label you get from the doctor depends on the signs and symptoms found. But the underlying cause may not be the same and may require a different approach. Men are often totally different in their course of disease - as often are very fit people-  and I had wondered if it was the fitness level that had anything to do with it. Obviously not necesarily. 

      I think you need some time off sick Flip and a reappraisal.

    • constance.de
      constance.de Anhaga

      Posted

      Top of this page "Professional Reference'.  Is that what you mean?
    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      HI Eileen, just letting you know that I have seen another GP (I got bullied into it by my family and friends lol) and have an emergence appointment with a specialist in sydney (3hours away). See my other post for more details! Lol
  • constance.de
    constance.de IssyR

    Posted

    Of course you are frustrated.  Why is it that the doctors will put the sort of pain we go through as "all in the mind".  I'd like to reply "and your attitude is all in the books".  They don't listen to what their patients say.  Why ever do such people become doctors?

    As for excercise!  You'd think, now-a-days, that excercise cures everything!  You are living the sort of lives our parents/grandparents lived (and many live/lived into their 90s).  You work all day, you look after your grandchildren, you shop, cook, clean the house, wash, iron, etc. etc.  And you are then supposed to find the energy to do some quite aggressive excercise.  Are you super human?  Our parents never excercised, they, like you, just didn't have the time/energy.

    So, Issy, go easy on yourself.  And, if you can, ditch your doctor.

    Good luck, and best wishes 

    Constance.

    PS.  Have a great Christmas.

  • tricia11872
    tricia11872 IssyR

    Posted

    Oh dear I know how frustrated you must feel. I asked the doc if I could up my Pred as I felt so achey and miserable but as my bloods were low would only agree to an extra 1mgs. This I now take at night and the other 4mgs in the morning. It does mean I can now get out of bed a little more easily. I don't think they have any idea how we feel.

    thinking of you..you are certainly not alone in all this.

    take care

    Tricia.

  • gillian_25383
    gillian_25383 IssyR

    Posted

    Do not know if you are in UK but if my ESR was 16 I'd be delighted -my last one was 37.Must be very frustrating when you are not listened to
  • EileenH
    EileenH IssyR

    Posted

    High time to find another GP who DOES know what PMR is. And has some idea how to develop a relationship with a patient. 

    The inflammatory marker that is 16 - is that your CRP? Is it creeping up steadily? If so that is suggesting the inflammation is also creeping up. If it is your ESR then it is still in "normal range" - except that doesn't say anything about what is YOUR normal as mie is 4, 16 would be high for me, and again it is what it is doing that is important.

    Though in fairness - if you want to feel better you need to rest more - that doesn't mean no exercise, it means allowing your exercise-intolerant muscles a bit of slack when you have been working them hard! One or other of working/looking after the grandkids is quite enough when you have PMR.

  • Silver49
    Silver49 IssyR

    Posted

    I don't know how you are managing to do everything. No wonder you are permanently exhausted. I am retired so PMR can be managed more easily. I can only relate your resent situation to when I had ME following a virus. I, foolishly perhaps, continued to work. My husband would have to pull me out of bed so that I could get going. I struggled at work and if I had to do home visits and climb stairs to tenement flats it was like climbing a mountain. I didn't take a day off work but I think the ME lasted longer than it may have done if I had taken time off. The pain was almost constant and when I got home at night I was fit for nothing. I cooked but trying to iron was impossible....2 articles and I was done. Thankfully, I did have a lady who did my cleaning. I don't know the answer, Issy, except as Eileen has said you probably have to make some decision between work or your grandchildren. I would not like to be in the position of having to make that decision as it will not be easy. The only thing I can suggest is think about what will happen if you become unable to do either and perhaps base your decision on that.
  • patti17783
    patti17783 IssyR

    Posted

    Hi Issy

    i often am reading things on this site but hardly ever contribute my thoughts cuz so many people are much wiser than me but today I felt compelled to reply to you.

    Whether or not your Dr. is right or wrong you two do not have a trusting relationship.  It appears you feel judged harshly by him and he os supposed to be your healer. You need to find a new Dr. immediately that you feel understands what you are trying to say.

    To me , a CRP of 16 is very high and any dose of progesterone under 10 is considered low. the 2 do not seem to go together. Also, coming off the progesterone too quickly can make you extremely fatigued because of the low function of your adrenal gland. We've all learned that some exercise is helpful in the treatment of PMR but it does not have to a formal exercise. isn't chasing after your grandkids a form of exercise? MOving your arms with ironing etc can get that blood flowing as well. 

    I am so sorry that you are so frustrated but it seems the frustration will force you to make some hard choices. It seems to be the time to put yourself first and maybe limit the time that you watch your grandchilderen? only you know the right path for yourself. Get some rest, you can feel better!!!!

    Good Luck

     

    • EileenH
      EileenH patti17783

      Posted

      Patti - never feel others are wiser than you. You have your experience to share too and it is a valid as anyone else's.
  • FlipDover_Aust
    FlipDover_Aust IssyR

    Posted

    What an ar$e your dr must be! Find a new one ASAP!

    My pain is as much stiffness as anything else. I can barely walk because I'm so stiff.

    I'm exhausted beyond belief most days and can't sleep.

    How dare that moron tell you crap like this!!!

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