Need Inspiration

I started aching on Thursday - All over pain! still got it... its not terrible but its there and its constant! Feeling really depressed and more tired than I have in a long time. today is the first time since I have been diagnosed that I cannot actually do what I had planned to do! I am supposed to be going to a Festival for the day with all of my friends and sisters and just cannot go because of the risk of me feeling worse than I already do!

I actually haven't felt this bad since being diagnosed actually, I really need to leave the house today as I am going mad!!

I don't know whether to call the doctor as I don't know what they can do... or try and ride it out..

I have not felt good for probably about 6 months now and I try everyday to put on a brave face and get on with it but I am now really struggling.. maybe because of the constant ache and stiffness in my body!

My husband says maybe I overdid it last weekend, we went for the weekend to London and had a brilliant time, admittedly a couple of late nights but nothing to strenuous..

I wish, wish, wish that I knew how long this would last, my house is a pig sty, mainly because I dont have the energy to clean it and my husband is amazing normally but he is working away at the moment and wont be back for 3 weeks.

Rant over!

5 Replies

  • What medication are you on? Medication should control a flares in the main but not always. Weather, exposure to sun, effort, stress - they can all contribute to symptoms appearing out of the blue.

    You don't say how painful is painful and what is actually hurting. If your joints are hurting then going to the doctor now would mean you'd be told to take antiinflammatories (Ibuprofen). I think many suffer with the joints at the moment, this weather is diabolical.

    If the pain is severe and located inside the body, e.g. tummy, chest, then it is worth going to A&E or call NHS direct to get an opinion.

    It is disappointing not to go to the festival, or do what you need to do but it will get better once the treatment is having its proper effect.

    House a pig sty - learn to be like a man (apologies to all the men lupies on this forum for the generalisation), I.e. blind to mess. The most important thing is your health, so give yourself a chance to get to an even keel before worrying about housework.

    Chin up - it gets better.

  • Thanks Purpletop... I'm OK just having bit of a wobbly! My Mum and Niece bless them, came and helped me tidy and have a clean up.... Ive been on Plaquenil for 3 years now and this last 6 months is the worst I have been (this week in particular) I am trying to get a referral to St Thomas' in London at the moment as there seems to be much more going on... I have had 2 stroke like episodes and am seeing a neurologist on Monday but I just feel like I am going back to where I was 3 years ago, whereby things are just getting worse.... I had a bit of discomfort in my chest this morning but seems to be a bit better now...

  • Time to go for immunosuppressants perhaps, it sounds like the Plaquenil isn't fully controlling it. Or you might be in a flare at the moment and a short course of steroids would resolve it. A rheumatologist would soon sort that out.

    Many lupies have the stroke-like symptoms you have, without them actually being TIAs but it is safer to check them to exclude something more serious, so it is great that you're seeing the neurologist on Monday.

    Enjoy the clean house :)

  • Have you been checked for APS /Hughes Syndrome?

  • Ranting is almost as good comfort food. I truly understand how you feel. In fact I was going to post the question to all. How do you know when to push yoyrself and when to say no staying home. Because of the exterior look of the disease, none, I'm tired of getting weird looks when I say no thank not today. This isn't about me it's about you. I have a suggestion. Jon kabot zinn has amazing books and audiobooks on mindfullness. It truly helps. Does it take away the discomfort, no, but it teaches how to deal with it. Good luck, always available for ranting........comfort food too. :). Keep taking care of you.

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