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Extreme tiredness and extreme hit flushes

Posted , 11 users are following.

liz76821
liz76821

Hi there. I am newly diagnosed ( June 2017) with PMR, having endured deep pains in both thighs for about 2 years. Within approximately 4 days of taking 15m Prednisone, I felt amazing, pain free and full of energy. However, my skin is so fragile it bruises it years at the smallest knock, so have been struggling to lower my steroid dose. I have reached a plateau dose of 7mg, with a bearable resulting amount of discomfort. I am suffering extreme tiredness and hot flushes day and night which are worse than anything the menopause threw at me! I'm irritable, clumsy and feeling rather low. My husband is not unsympathetic, but says I shouldn't try to fight this, that I should just endure this and make the best if it.

I'd really like to talk, do you know of any groups who meet in West Sussex? Thank you for reading this time.

0 likes, 23 replies

23 Replies

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  • Michdonn
    Michdonn liz76821

    Posted

    liz76821, we are all different and each individual case in different. I am PMR pain free and very active on 12.5 tapering from high of 30 in the spring. My skin is very thin, bruises I always have bands aid on my hands and arms. I have night sweats, use 2 or 3 T shirts every night. But if and when I get to 10 mg, my taper is going to be the full DSNS taper, if I get any PMR pain, halt and bump up the dosage till PMR pain free. This is not a race, the Rheumy may think so, but they are not living with PMR pain, take your time. Find the dosage that you are comfortable with, then taper slowly. Good Luck think positive.
  • linda97410
    linda97410 liz76821

    Posted

    Hi Liz76821

    welcme to this forum -I'm sure you're going to find all the support and information helpful even if it is a lot to take in initially. 

    I don't know where in West Sussex you live but there are groups meeting in Brighton, Chichester and Worthing. I attend the Worthing group which meets on the second Tuesday of each month. We meet in the pub at 1100 ( not 11.30 as stated on the website) and there's usually 6-10 people present. I've learned a great deal from sharing with others and it definitely reduces the sense of isolation that goes with this complex illness. You'd be made very welcome at our group which meets next Tuesday 10th October at The  Sussex Yeoman Pub, Palatine Road , Goring by Sea Worthing BN 12 6JN. Full details of the other 2 groups on the PMRGCA website at

    www.pmrgca.co.uk   Look under the groups section in the menu. 

    With best wishes

    Linda

    • liz76821
      liz76821 linda97410

      Posted

      Thank you for your kind reply. I'll certainly try and get there, but Tuesdays are tight for me.

    • EileenH
      EileenH liz76821

      Posted

      Even being in contact may mean you can set up informal meetings for coffee with people. And it isn't EVERY Tuesday ...

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