Morning (afternoon!) loopies

Haven't written for a while as going through a bad patch but have been wondering about triggers for flares.

I am on prednisolone at the moment and for the first 6 weeks it seemed to have done the trick in keeping the symptoms (specially joint pain) at bay.

I have been trying to do everything right, eating well, lots of rest, preserving my 'spoons' however a few weeks ago i had a late night and went to bed at 3am. Ever since then i have been flaring badly.

I've had a swollen nine month pregnant looking stomach, sweats, radiator body, extreme joint pain in fingers, wrists, elbows and feet, swollen face around my eyes, muscle aches, breathlessness the lot!

So my question you think that all of this could have been triggered from the late night that night? I have presumed it is but am astonished that chatting to friends in my pjs until 3am could have caused this massive effect!

I've had to take days off work again due to the pain which I hate doing.

I'm bracing myself for a worsening of this flare as last night was another v late night as i was working (am family and criminal solicitor) and was at the police station until 2am. Really not ideal but unfortunately I can't control the speed that the met police work at!

Feeling v sorry for myself. Am in bed resting with my entire body aching and joints in pain. Just want this to all go away but I know it won't. I don't want to up the steroid dosage but I can't have this pain. There are going to be the odd nights (2 in the last 8 weeks) that I am up late.

Any suggestions as to whether this could trigger such a massive reaction or is it that I'm getting used to the steroids and they aren't as effective anymore?

Heeeeelp xxx

8 Replies

  • You poor thing, it's possible that this is just one of those unfortunate things and you just happened to get a flare around the same time that you stayed up late. Possible the steroids need adjusting...been back to docs?

    Hopefully your flare passes soonxxxxx

  • It's probably a co-incidence. If you are anything like me you need to find a cause for a flare as it justifies being ill rather having no reason for it.

    I can have no ill effects from a night out yet be in bed for the rest of the day just from going to the shop.

  • It may be a co-incidence. Flare triggers are an individual thing. Over tiredness is a major flare trigger for me, once a flare has been triggered the only way out of it is to have complete rest, otherwise it goes on and on. So late nights are a no,no for me. But that's just me, this may not be for others.

  • Sounds like a reaction to steroids to me, the swelling and breathlessness in particular. Sometimes the steroids also cause symptoms you haven't had before or flare-like symptoms, such as hot flushes. Are you on any taper yet, I.e have you started reducing yet, because that cd be a cause too.

  • I find it unpredictable but find that sometimes I can do quite arduous things and not be affected and yet can have a flare up when I feel I have really been looking after myself.

    Does anyone suffer after a few glasses of wine? I had a few on Wednesday and suffered Friday and Saturday.

  • I work part-time and went out last Thurday till 11.30, to be honest I was worried about the effects of going out as I knew it would have an effect the following day. I wanted I be with friends and we saw a band and it was great, but the following morning boy did I pay for it I felt like my legs could barely support my body and felt very light headed so subsequently had to take the day off sick. But that's just me I know what my limitations are and what happens if I do too much and overstep the mark but you have to live don't you? However the following day I was in floods of tears because of how I was feeling its so scary when you just can't do anything with your body but take it to bed and rest.

  • I agree with Greaney. The same happens to me and yes it is so scary that it puts you off doing things like that again, but then you end up miserable because your life is so restricted.

    The difficult part is knowing how to deal with it, but I find muscle testing is great because sometimes I find that when I think I am tired, I actually need to go for a walk and others when I feel hungry - I am actually thirsty. I find this out by muscle testing - kinesiology.

    I also meditate when exhausted and ask for help - visualising my body healing and trusting that it will do so even if only for a short time. Difficult life!

  • Loopylooby you poor thing, I would like to bring one thing to your attention which made a huge difference to me - lighting. What sort of lighting is there in the rooms where you are working, if there is flourescent bulbs or low energy bulbs are they uncovered as many places are lit by this sort of lighting due to it being economical. I am very photosensitive and if I spend any amount of time in places with this sort of lighting it makes me much worse almost instantly. I sometimes go in places where I can't do anything about this so I normally have at least a factor 50 sun cream on my face and I wear a bandana, scarf and gloves all the time. The gloves are not ideal if you have to use touch screen computers but there are ways round that as you can get little rubber things that stick on the end of a pen to use it is worth it to keep you healthy. I have stock piled the old style light bulbs indoors in case there comes a time that I can't get any.

    Another thing is these yogurt drinks to "boost your immune system" they are evil to us lupies as they just give our topsy turvie system more power to fight us so avoid them too.

    I hope this might make a difference to you, good luck


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