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  3. Polymyalgia Rheumatica and GCA

I feel lost. Please help

Posted , 14 users are following.

may66088
may66088

I have posted here twice before. Diagnosed 27th April after becoming I'

ll on a cruise. GP started me on20 mg Pred . My pains disappeared but

after 1 week because I seemed to react badly to the steroids she told

Me to reduce to 15. Everyone who answered told me it was too much of a

Of a reduction. The pains came back AND I still had all of the side effects

Since then have increased to 17.5 but am feeling no better. I am back to

finding it difficult getting out of bed in the morning. I have no energy

and have to lie down often . Should I start again at 20 and put up with

the flu like symptoms, the spaced out feelings, headache, funny

Hands, blisters in my mouth and higher blood pressure BUT get rid of the pains

0 likes, 28 replies

28 Replies

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  • FlipDover_Aust
    FlipDover_Aust may66088

    Posted

    Hi May,

    I wish I didn't, but I know exactly how you feel. It's awful.

    The hardest thing is coming to terms with the fact that you can't just take the pills and it all gets better. It doesn't. This is a long term, chronic illness. One that nobody has heard of, that you can't see, and you feel like a whinger all the time.

    My only advice is to wrap yourself up and feel sorry for yourself for a while. It's ok to do that.

    Then, when you are bored with that, you'll probably feel angry, then you'll start coming to terms with everything. By then, the drugs will have you feeling a bit better, you'll understand your new body/life a bit better and you'll find new ways of doing things.

    Until then, you can tell us how you are feeling - we will always listen and offer support. XXX

    • Silver49
      Silver49 FlipDover_Aust

      Posted

      That is really good advice. I didn't ever feel angry just frustrated. I did exactly as you suggest and felt guilty at the time but it has paid dividends. I paced myself and although I helped look after grandchildren etc I let housework lapse a bit and did  the minimum necessary. I took stress out of my life as much as possible. I know that's not the case for everyone and I am retired which helps. I am a year down the line on steroids and I am finally feeling more normal whatever that is. I have managed to do gardening without any extra pain .....just minimal muscle pain which I would expect. I can plan more and not think if I will be able. I realise that it may come back but if it does I shall hang on to the fact that it is improving. I am reducing to 8.5 at present.
    • may66088
      may66088 FlipDover_Aust

      Posted

      Thank you you have made me feel better. People I know who do

      not understand this illness expect me to take the steroids and be

      as I used to be. May

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