Help

I have just literally dragged myself back from getting my groceries.I am aching so bad and such a fever,I am soaked yet,I am ice cold to the touch.I did speak to my GP in desperation some time ago.She told me not to drink hot drinks[I very rarely drink hot drinks].I don't want to contradict my GP but,I know it is not the hot flushes,I have been there with that,this is completely differrent and absolutely draining.If my GP can't or will not help where do I go?Again she did not seem to know if it was related to the Lupus,when I mentioned it to reumatology they said it might be my thyroid med.Now waiting for more blood tests.

6 Replies

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  • could it be an infection are you on immunosurpressants? if your really worried do go to A&E sorry you having a rough time hope you feel better soon. i only get vague symptoms of infection temp/ aches and pains.

  • Think it is a reaction to being bitten by insects but,GP's usually recommend anti-histemmines[not sure about the spelling]and lotions,non of which work.I am seriousely thinking about A&E as I am with reumatology at that hospital[no names mentioned.I have had a really bad time and felt really ill.Tomorrow is my deadline,if I feel the same I will go to A&E.It is definately a flare-up again.What to do?I really hope somebody can help I am so tired of this.I am taking hydroxychloroquine[just started 2 weeks ago]I am hoping it will help but,I was informed it could take some time before it helps,including blood tests in between.

  • hope you get the help let me know how you get on big hugs the hydroxy has been really helpful to me. so persever.

  • Oh poor you :( I really do sympathise with you here. I suffer from fevers quite badly and it leaves me drained and exhausted. It's just my immune system going into overdrive thinking there's an infection when there obviously isn't. It usually flares up when my Panniculitis does. It really is no fun at all, my temeperature can reach 104F leaving me very poorly and unsteady on my feet and I'll also suffer nauseau, vomiting and stomach pain in the 1st week or so and shooting pains and muscle spasms worsen. This is why I have so much time off work, the longest they've stayed with me for is 9 weeks. That's not including the inflammation flare up before that and then the time it takes me to recover and get back on my feet again-so it's quite a long process!

    I just take Paracetamol regularly and try to keep my temperature down with cold drinks, fan etc. Try to resist hot water bottle and blankets even when you're freezing, it'll just push you're temperature up.

    Have you been suffering for long with them? And how long do they last for? I hope it's not going to become a regular thing for you.

    Hope you keep us posted as to how you get on.. take care.

  • How rotten! I used to get the same symptoms (terrible stiffness, lupie pains, could hardly move, shivering, hot and cold, if bad i lost my appetite) and it was always a sign that my lupus was out of control. Horrible, felt so ill.

    But I haven't had it for a long time since I got on the right medication. Was taking 8.5 mg prednisolone and if I started to reduce it the flares started. Since being on the imunosupressant Mycophenolate I have started to reduce the steroid.

    When you feel like this you have to rest and keep warm. Remember you will feel well again, these feelings won't last for ever but make sure that you spell out very clearly how bad you feel to your doctors and ask for appropriate treatments. Don't feel that you have to put up with it.

    Look after yourself by not pushing yourself, ask for help.

  • Once again,thankyou for your support.Feeling a little better today and am hoping this flare has passed.Perhaps,with a little more time the hydroxychloroquine will kick in.I am now noting these flares in my diary and will most certainly speak to reumatology about them.As you know,usually by the time they have done new bloods things seem to have settled.I suppose unless you are under observation all the time these things are very difficult to control.

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