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Dumb yet again !

Posted , 11 users are following.

judytal
judytal

mornin all,  thought I could do alittle work on my deck...dumb, dumb.. I think I have finally learned my lesson... I spent 3 days feeling absolutely terrible... Weakness, sick all over... Tried to sleep it off but just had to wait for my body to try and recover!!  Not a fun time..  

My head is so full of articles re. PMR yet what seems to be a difficult "problem" to have friends understand.  Since before I was the one to say "Let's go for a walk or let's go work out ..." Now I can barely walk my dogs !  clean house, cook, forget it!!  

Sorry for being down but I know you all understand.  Thanks and all the best to all.

5 likes, 26 replies

26 Replies

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  • audrey25251
    audrey25251 judytal

    Posted

    Judy, I must say that not being able to clean the house was one of the things that hit me hardest. My husband willingly helped but he, like me, is almost 80 so he has his limitations. I bit the bullet and got a charming (and efficient) Bulgarian for a couple of hours a week. They charge me £10 an hour, and it might well be cheaper outside the London area where I live. If you could survive on a minimal say two hours a fortnight I'm sure you'd feel so much better with a cleaner house if you could possibly afford it. I know I did. 
    • judytal
      judytal audrey25251

      Posted

      Audrey I was never the cleanest one on the block but I did like to do it when I wanted and not have to say I better take it easy!!  I was out of life for 3 days!!  Today is still some leftover fatigue but I'm managing to walk the dogs and just thinking about going to the store for some food!! 

      I'm 72 so I should be able to clean my house.  I'm not working, single and trying to keep expenses down as best I can' 

      Oh, I live in the United States.  Yesterday I finally gave in and went for a haircut ( a trim ) It was $50.  !!  I couldn't believe it.  Where I usually go is $30 but I just couldn't drive there but I'll go back next time!!  

       So audrey , you take care of yourself... thanks for your thoughts,  I appreciate your taking the time to write to me.

      alll the best, judy

  • david14272
    david14272 judytal

    Posted

    Hello judy. i have just log on. been out with family.i just wonder about your taking of pred, why are you spitting your dose & if you are on the right dose to kill pain,i have always taken mine in one dose early morning,just wonder if you are getting the best benifit out of your pred.my/our thoughts are with you.Dave
    • judytal
      judytal david14272

      Posted

      Hi David,  I have received very little direction from MD.  I requested ( because I believe the Rheum. did not believe me and he sent me back to my Primary)  I requested if I could take 8mg... 4mg in the morning and 4 at night.  At that time she said that it was good that I split the dose.  The 8 mg seemed to relieve the  really bad pain, which I seemed to only get occ. in my shoulders and neck.  My biggest challenge and I mean biggest is the fatigue.  I MUST push myself to move my legs and arms.  My body is extremely difficult to get moving... not because of pain but the fatigue is overwhelming.  When I attempted to clean up the deck, whicih I only partly finished but not really, I was wiped out for 3 days.  Today I am just trying to get going again.  Mostly just taking the dogs on short walks.  I need to go to the store but I'm not convinced I really need to go. 

      I'm now down to 6mg ( 4mg in the morning, 2 at night )  The pain is still at bay but again the fatigue is terrible and depressing. 

      This all started around August 2014... As you can see my labs were always "within normal ranges"  that why the Rheum dismissed my symptoms especially the fatigue.  I sent him the article on fatigue being a precursor of PMR !!  He called and apologized and asked if I wanted to go back to him.  I will not go back to him because I do not trust him....

       Well david, take care of yourself.  Thanks to y ou and everyone on this site.  Evereyone is caring, supportive and I am grateful to have someone to listen to me.  Gratefully,  judy

    • EileenH
      EileenH judytal

      Posted

      Judy - do consider giving this rheumy another chance. If he called to apologise he is worth spending some time on. Both for yourself and for his future patients. They know very little about GCA/PMR (especially PMR) and I believe strongly in education. Most of what we can do with the forums and support groups is educate patients - but when the opportunity comes to educate a medic I believe we should give it a go. They are very proud people - someone who admits he may have been wrong is something special. 
    • judytal
      judytal EileenH

      Posted

      Eileen, I hear you...I too believe in education that's why I sent him the researche article.   But when he first called me to dismiss my symptoms he really sounded stressed.  As a mater of fact he told me to call ( if my blood pressure went up)  and when I did he told me he didn't "do" that.. Whatever that meant ( his nurse).  This medical group has so many patients I don't know how they handle it.  Maybe I'll send him another article.  You're a better woman than I... I usually give people a second chance but.....

      thanks for your thoughts.  Best judy

    • EileenH
      EileenH judytal

      Posted

      Ah - now that is a different matter. THAT sounds like someone who is greedy for the income of a lot of patients and as a result is not providing good quality care. 

      I'm also far from sure about you taking your pred dose split half and half is the best way forward - but everyone is different and for some people it does work. It isn't recommended practice though.

      Hope you find a good rheumy soon - if your PCP isn't any use.

    • judytal
      judytal EileenH

      Posted

      I don't think they have a choice.... Practice is run by those who I'm guessing set up rules regarding time management and patient load etc...  Of course they could go somewhere else or have their own private practice.... but many who used to have their own have since started another group or retired!! 

       The split dose was recommeded by my PCP and it seems to be ok... of course for the fatigue which can change from day to day and what I decide to try and do !!!  Like this morning my legs were an 8  (scale of 1 to 10.... worse at 10  very subjective, I guess) but that's just it.  Wake up walk the dogs... legs feel like they just don't want to move and I must push, which at least the rest of the body was willing !!! 

       Each day is different and my mind in acceptance is different each day!! Thanks for your support. I truly appreciate you ....

      judy

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