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I have been diagnosed with cutaneous lupus & Sjogren's. I am taking

Plaquenil (hydroxychloroquine). Please, please can anyone advise me

what to do about the awful fatigue?


2 likes, 9 replies


9 Replies

  • Posted

    Hi. I have been struggling with the same, I haven't found anything that works apart from not getting worked up about it, as it makes it worse. Just have to stop whatever you are doing straight away and I find reading helps me - not sure how / why. Maybe it just calms me down, I find the frustration is a big factor. Have also found that taking the plaquenil later in the day makes a difference? Again, not sure why. I feel really sick until after midday and find that taking it 1-2pm makes a difference. Hope this hepls - if only to reassure you that you aren't the only one!
    • Posted

      Thanks for replying. Your absolutely right it is so frustrating.

      I was very active before all this kicked off. I had 2 exercise, and 3 dance classes a week and now I'm lucky if I manage a walk.

      I feel it's so impotant to exercise but I just can't do it

  • Posted

    Don't put so much pressure on yourself & listen to your body, it know when you need rest/sleep.

    Getting up out of bed feels like a massive task somedays but I have learnt that this is ok smile

    If you are struggling to get to sleep I would try a hot bath with some sleep therapy products. I know Avon do them as well as a pillow mist but I am sure there are loads out there.

    Yoga and Meditation can also help depending on your muscles & joints.

    • Posted

      Thanks Katieo. I just can't seem to come to terms with my

      lack of activity, I was always so active. I have no problem

      sleeping it's staying awake that's the problem haha. I have

      an odd day when I'm not too bad but most days I feel like a

      lump of lead and just want to close my eyes.

      Is there any chance of the fatigue diminishing, or is this going to be life from now on?

      Sorry to sound so miserable, I've had a particularly bad few


      Thanks again katieo.

  • Posted

    I wish I had a magic wand!

    I know what it's like - I took 6 weeks off work splet 12 hours and night and would also have 2-3 hours in the day. It's about listening to your body, if you are tired sleep.

    I have tried pro plus, coffee, red bull etc but if I'm tired nothing will keep me awake!

    If you are getting concerned I would make an appointment with your specialist as they may be able to suggest something for you.

    I have suffered with my health since I was 8 so I have never been super active but if you were use to doing so much maybe try gentle exercise.

    I do yoga and have a dog so just some light walking. I also find swimming good but again feels like a massive effort to go out & get changed etc.

    You Tube have some wonderful yoga for beginners so you don't have to leave the house!


    • Posted

      I had thought about Yoga so will have a look at You Tube.

      I have an appointment with my consultant next week so I will

      be raising it with him.

      I know what you mean about nothing keeping you awake,

      tried the caffine and all that did was give me palpitations!

      Anyway I'm glad to say that I'm feeling better today so I have

      to be grateful for small mercies.

      Thanks again Katieo.

    • Posted

      That's what it is all about giving yourself credit for the little things!

      Glad to hear your feeling a bit better x

    • Posted

      Rest up and rest up again! it usually flares up but passes, awful though. I've had it for years and it's about listening to your body. Don't do too much or over do it xx
    • Posted

      Yes jacs I've been learning that the hard way. It's so easy to

      overdo things when you're feeling a bit better which only leads

      You back to square one again.



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