hello everyone,

as some of you know im having my worst flare ever, it begun in june. I can usually cope with fatigue as its a daily symptom for me,its now become normal. but the last week or more I cannot cope, im so so tired that my legs become lead and I trip over nothing, im tearful and so tired that I could literally sleep on a pavement

I need the world to stop just so I can sleep. proper sleep,not a couple of hours filled with nightmares.

I have to work and I pace myself and work short bursts of time so I can recharge in between but this isn't working, I usually get warnings when my lead legs will happen but recently nothing. I think its this long hot summer we are having that's made me more poorly than usual. im to make a doctor apt this month as my med review is due, no point bothering my rhuemmy as shes as useful as a chocolate teapot.

apologies for whinging x

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4 Replies

  • Hi.

    Poor you, sounds like you are having a very tough time. What medication are you on? If I am having a bad flare I up my prednisilone for a week or so then taper back down? It's a Shame that you can't call your consultant for some advice and that they aren't much good. Awful that the flare up isn't shifting. I agree, the summer has played a part in me feeling worn out! Hugs to you and hope that this eases up for you very soon.


  • So sorry that you are suffering so badly with fatigue CC. Bone crushing fatigue is very difficult to live with, and sometimes it is indeed a medicine tweak that is needed.

    I have been in a short but violent flare since mid-July, like you normally can cope but this has been horrendous. I immediately saw my GP, he took one look at me, and wrote to my consultant, who spoke with me, and we have added a med or two, and tweaked others, it has dampened things down slightly but not enough, so today, I was worked up by the Lupus Nurse and given a Depomedrone steroid shot today, fingers crossed.

    You are quite entitled to ask for a different Rheumatologist if your not happy with your current one, did you know that? Also if you have Lupus Nurse attached to your hospital, absolutely recommend you make use of him or her, my Lupus Nurse, is amazing, so helpful, and she can get access so quickly to a Rheumatologist for advice on the day if needed.

    Good luck and hope you feel better soon.

  • Its funny that you have mentioned the weather because i have really been suffering through this heatwave but didn't put two and two together!

    You should look into finding out if you can get a different Rheumatologist! at my last appointment i was complaining to a nurse about my symptoms and she gave me an emergency number to call them on! i have been going to this hospital over two years and its only now I'm getting this number??

    I suppose if you don't ask you don't get!

    How has your PIP application going?

    I am currently waiting for an appointment to be accessed

  • Your flare has lasted so long, your doctor needs to do something about it, you can't live like this! Fatigue is absolutely awful, it stops life from being life. It even makes you wish you'd be able to have an argument with someone, just so you can say you've had the energy! There's no explaining to others about fatigue either - no one gets it. So we just walk around zombie-like hoping we could sleep and wake up refreshed. My fatigue is much better lately, I've been on CellCept for the past 2 months - but I'm still tired and that tiredness doesn't go away no matter what I do. But strangely it doesn't affect my energy levels, I can still go to the gym and clean etc.

    I agree with the post above about different rheumatologist - lupus is bad enough without having to deal with an incompetent doctor. I know it doesn't necessarily mean that you'll get a better one and that's a worry but it must be better than suffering as you are without any help.

    Until then, try and be good to yourself - just sleep as much as you can, forget about everything and everyone else for a while and focus on you.

    Good luck with the appointment and I hope you'll get a tweak in the treatment that stops the flare soon.

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