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Entertaining

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linda451
linda451

Hi everyone i've had Pmr for just over 2years now with no sign of it going my pred level is 10 mg. we have just spent 4days entertaining family visiting for a funeral. I must admit it has been a busy and booze few days. On Sunday when I started doing anything I was  experencing extreme exustion and palpatations. Do you think I have just over done things ?. I get fed up with this condition always controlling my life. By the way I take 40mg atorostatin 75mg aspirin and adcal my age is 53 I work but luckily I'm on holiday this week. Pleassssssssse help

0 likes, 13 replies

13 Replies

  • constance.de
    constance.de linda451

    Posted

    I think you're lucky to have the strength to be busy, to travel, booze at all!   I have had PMR for 4 years and STILL feel extremely tired and am on 7 mgs Pred.

    Of course you have been over doing it.  PMR is a beast of a condition and rest is one of the most important things for us.  Working whilst one has PMR is extremely difficult.  You can 't just stop and have a rest.  

    Good luck and take care.     Constance

    Good luck

    • linda451
      linda451 constance.de

      Posted

      Hi Constance yes I know your right about rest but I just get swept along with what's going on luckily I'm on holiday from work this week so it's rest rest rest what worried me more was the palpitations when ever I was doing simple things like just walking up stairs I will make doctors appointment if they don't go away.
  • doreen25667
    doreen25667 linda451

    Posted

    Hi, Linda,

    I do not have PMR . Instead I have G C A and am also on prednisolone, having started 18months ago on 40mg and now down to 6mg. I sympathise with your feelings as sometimes (right now!!!) I feel very down and so tired I can barely get off the chair to do anything. I try to shake myself but it can be very difficult indeed. I seldom see my GP. He says to reduce the dosage and if the pain comes back go up again! My BP has also been very high and I am on a high dosage of candesartan for that. Of course age (77) means I should expect health problems I suppose! My weight has also increased and I now have a fat face but I just tell myself that at least I don't have wrinkles!!

  • EileenH
    EileenH linda451

    Posted

    Yes - you have definitely overdone it and now you will need some time for you and to REST. The autoimmune disorder that causes the PMR symptoms is still there in the background - all the pred is doing is managing the symptms to allow you a decent quality of life. Overdo it and the PMR will bite back - every time. Your muscles are unable to tolerate acute exercise and not only don't warn you you are doing too much but also take far longer to recover afterwards. If you learn nothing else with PMR you learn patience - or if you don't you will have a very unhappy life! You must plan in rest breaks - and in the end you actually have more better quality time because of taking some time out.

    You obviously have a cardiac problem history - but are you sure it is "just" PMR? How long have you been on atorvastatin? Ten days of half dose almost had me in a wheelchair with extreme PMR-like symptoms and it is a common side effect with many statins. I already had PMR - but simvastatin is known to trigger PMR, even the manufacturers admit that. 

    The autoimmune part of PMR can also cause palpitations for various reasons - I have atrial fibrillation and the cardiologist is pretty sure it was caused by the autoimmune disorder damaging the sinus node. My husband also has a/f and his is caused by exercise. If your palpitations don't settle down do get your doctor to check them out.

    And a final question - why are you still at 10mg of pred? Is it to be able to cope with working (which is understandable) or have you failed with reduction attempts? If so, how did you try reducing? I was also in my early 50s when PMR appeared 10 years ago - I had 5 years with no pred as no doctor would admit what I had and only got below 10mg when I devised a VERY slow reduction programme. Now I am at 4mg and well. Maybe that might help? 

    • constance.de
      constance.de EileenH

      Posted

      Eileen, are you now well enough to go skying?  Can you walk to your heart's content?  When you say "well" does that mean no pain at all?  When will you be able to join the Club Zero do you think?
    • EileenH
      EileenH constance.de

      Posted

      Haven't gone skiing this winter again for a variety of reasons - December there was next to no snow, very thin cover doesn't do dodgy knees much good, and none of my neighbours have skied this year and it gets boring being out on your own every time! Had I known my daughter was coming I would have gone out and practised a bit! As it was I was taxi service and entertained Naomi who only did a bit due to severe asthma. 

      We walk briskly every day for 1/2 hour - and on occasions walk the 45 mins up to a local restaurant, have lunch and walk back down. I have walked around Innsbruck for 3 or 4 hours with no problems and when we were at Garda walked from Pacengo to Peschiera, had lunch and walked back - it is flat but well over an hour's walk each way.

      I occasionally get a twinge in my right hip but if it is too insistent head for the GP for a cortisone injection which sorts it for another 6 months. I have the odd ache - I carried skis one day last week and my right shoulder aches a bit in the mornings but I don't think it is PMR. I get a bit of backache but I've had that for many years so it isn't anything new.

      I'm not even thinking of Club Zero - I am happy at 4mg, of course I will attempt another reduction but last autumn 3mg was a bit too far and I got an ache in my right bicep that wouldn't go away. It did with 4mg. I've lost all the pred weight, my (other) forum photo now looks similar to the one I have on my Facebook account which was either pre or early PMR I think - which 10 years later is quite acceptable lol

    • linda451
      linda451 EileenH

      Posted

      Hi Eileen thanks for your reply, I think I have been taking statins for about 4 years I was told I had slight changes to my arterys not all that serious really but enough to put me on the dreaded statins and yes I think I got Pmr from a combination of stress and statins I will be seeing the doctor if they carry on this week. Also I had a flare pretty recently I got down too 7mg then the flare up started so went back up to 11mg I am starting to reduce again but with what's just happened with having visitors I won't be coming down just yet, I reduced down half a mg at a time and only drop the dose if I'm feeling ok it's a long process with me working but it works for me.

       

  • Karyjo
    Karyjo linda451

    Posted

    I began to have my first signs of PMR in November, 2014 but I was diagnosed in January. It is very difficult for me to include and especially to assimilate what Eilleen wrote:  Your muscles are unable to tolerate acute exercise and not only don't warn you you are doing too much but also take far longer to recover afterwards. If you learn nothing else with PMR you learn patience- You have no pain, you feel very well. You want to make activities which you cannot make when you have some pain. It is very difficult for me to know my limits. I know them after I too much made I suppose that I shall in time learn to manage and finally to understand that muscles cannot make any more and I cannot make what I am doing before PMR !  I know I am not able to spent 4 days entertaining family.  After 1 day, I am very tired.
    • EileenH
      EileenH Karyjo

      Posted

      " It is very difficult for me to know my limits" - exactly, and so you have to learn to stop before you think you need to and preferably get the family to help by reminding you.

      You do something one day and are fine - remember that and maybe try a bit more tomorrow. Until you find your limit - and note that.

      In the early days of PMR I still skied every winter but instead of getting up and setting off for a day skiing at the beginning of the season I did maybe 3 short runs, resting on the lift each time. I learnt by bitter experience that at that stage doing the 4th run was likely to end half way down the run feeling sick with exhaustion, it was like hitting a brick wall. Or if I thought, one long run is the same as 2 short runs - no it wasn't. The next day my legs would ache unbearably. And for several days.

      By February I would get to a stage of training where 2 or 3 hours was possible with a coffee break in the middle - but preferably mostly short runs - those all important rests on the lift were not to be forgotten. Though a couple of places had a bench in the sun - that was OK to do a longer run for a change.

      And towards the end of the season I could even manage a long run - in the early morning with no soft bits!! Or I would ski for 3 hours working my way from the east-facing short runs round to the south facing short run and then go back to the east for a hot chocolate before taking the lifts home.

      Training makes a difference - but it has to be in small increments. And there will be a limit even then. And do it on alternate days - give the muscles a chance.

    • linda451
      linda451 Karyjo

      Posted

      Hi Karyjo I find that because I look well people don't treat me any different from anyone else they think I'm ok they don't see what's going on inside, they only see that I have put on weight, also I try not to give in to the condition. When I was diagnosed I had just payed my tennis membership I said to my doctor I had wasted my money, all he said was do the tennis and do more or as much as you can, well that's ok but I have to listen to what my body is telling me if it says rest then that's the order of the day.
  • pauline36422
    pauline36422 linda451

    Posted

    have you never got below 10  in  2 years 
    • linda451
      linda451 pauline36422

      Posted

      Yes Pauline many times but have had flares so back up they go.
    • EileenH
      EileenH linda451

      Posted

      If you follow this link:

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

      you will come to a thread where the first post has links to a range of info-providing sites and medical papers.

      In posts 4 and 5 you will find the details of a very slow reduction scheme that has allowed a lot of people to reduce further than ever before. I always got stuck at 9mg, whatever I tried, until I developed this plan. It and a similar plan worked out by another lady have worked for a lot of people besides me on the forums. Doctors are hoping to trail it officially, one doctor is already using the other lady's version. 

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