Recognising flare-ups.

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This may sound like a really stupid question but can someone give me an idea of how I would recognise a flare-up? The only clue I have is that I get more pain and/or confusion at the same time the rash on my thigh becomes more prominent (more wide-spread and more vivid). Then I just feel worse than normal! Is this usually how flare-ups manifest?

Over the last year (almost) I've had one or other of many sorts of symptoms, seemingly without a break and I wondered if this is how Lupus or MCD presents? Altogether I've experienced Lupus symptoms for about 8/9 years but only recently put it together, so to speak. Blood tests support a Lupus diagnosis.

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  • Posted

    Hi Susan

    I was diagnosed with lupus (sle) when i was just 14. Am now 31. I have regular flare ups,with all different symptoms,I am having one at the moment,this one stated with feeling very tired and me having to take naps during the day,which i never do. But other times,pain in my joints,losing hair. Hope this helps.

    Lisa smile 

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    • Posted

      I must admit that tiredness has been a problem and I did go through a phase a few years ago where I was having naps during the daytime but I put that down to working nights and having a young child around! People have commented that my hair looks thinner. To be honest, I originally thought all my health issues were related to menopause!!

      Recently, though, since my Hysterectomy, I've had unending pain in most of my joints and muscles in addition to episodes of stupidity/confusion etc - my spelling goes to pot and my handwriting is atrocious during these times. Had I not been looking into my brother's health problems around this time I would probably never have made the leap to Lupus being the source of my problems.

      I understand that flare-ups are different from one Lupus sufferer to the next, but your description has rung some bells, thank you.

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  • Posted

    Hi Susan,

    I think some symptoms of flare-ups are tiredness, fatigue, and elevated body temperature. Of course every one is different. I have read up rashes on the legs. Have you had that checked out by your doctor? It sounds like vasculitis. The best thing you can do is get lots of rest.  What treatment are you on for your lupus? Take care.

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    • Posted

      Hi, Cheryl,

      I've been referred to a Rheumatologist and my GP agrees that there are indications of Lupus in my blood results. Currently only taking Paracetamol and Ibuprofen for pain, and Amitriptyline to help with sleep and pain at night.

      The rash is on my left thigh and doesn't itch, never scabs over or blisters, it is bright red, raised and comes and goes. I believe, from what I've read, that Vasculitis affects the lower legs and is usually symmetrical, oddly enough I do get a very itchy, blistery rash on my feet which is limited to my ankles and the tops of my feet - it is totally different from the one on my thigh. I hope that I get a diagnosis soon and get some more appropriate treatment as I am finding it difficult at work, especially on day shifts.

      Thank you.

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    • Posted

      Hi Susan,

      If they have detected Lupus, have you tried plaquenil yet?? It's supposed to help with joint pain. Gosh you poor thing, your body has been bombarded with everything. You might want to consider going on sick leave so that your body can get complete rest. It sounds like it's on overdrive and without a break, it's just getting worse. It's an awful thing to have to try and manage work,  home, and then take care of yourself. Hugs. 

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    • Posted

      Hi, Cheryl,

      I had an awful lot of time off in the last 2 years due to Vertigo from an ear infection, a frozen shoulder and two surgeries (one for the shoulder and a Hysterectomy) I am reluctant to take any extended time off until I have a diagnosis from a specialist. I work part time and have at least two days between shifts so I can get some rest. I usually sleep in on my days off and I limit the housework to a few chores each day (I know, any excuse to avoid the ironing!!), that way I don't overdo it. I have some holiday time soon and will be making the most of it!

      Take care and thanks for your concern, it is appreciated.

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  • Posted

    Hi Susan

    I was diagnosed with LSE in 2003 and from a male perspective I found that a day or two before a flare up I become very moody and anxious and always seem to get the butterfly rashes starting on my wrists and hands and during the flare up the ridiculous red face!!!

    I also find that I start getting vicious headaches and constantly tired trying to sleep at any oppertunity.

    I increase my cortisone for a Maxiumum of seven days as then you do not have to taper off although never really know if it helped.

    I also found that during a flare up I am always suspectable to Colds and Flu not sure if all else get the same symptoms

    Pains in elbow and knee joints are common and the worst part is nobody understands how you feel and I always try to put on a brave face as work offshore with >12 hour days but keep going

    I did try a treament in SA that was working but due to me being away for long periods I stopped and really found this to help and once I get back to a normal routine??? Take a look and see for yourself ( Google sevenpointfive )

    I wish you all the best and know what you are going through it is one of the most lonely diseases on the planet but be strong and beat it!!!

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    • Posted

      Thank you, Peter,

      I've been trying to remember how I've felt before the pains get worse and I think I've spotted a pattern, but to be honest I have been in pretty much constant pain for the last year or so with only a few days in a row every month or so when it seems to abate. The worst pain is in the joints of my feet and hands, and my muscles across my shoulders. I get a range of headaches too so it is hard to differentiate between a 'normal' headache and a precursor to a flare-up!! I've had Migraines for 30 years and developed Cluster headaches about 10 years ago.

      Most of the symptoms I've had have been mild and fairly infrequent since the last 8/9 years (I had an ear infection which gave me Vertigo and I fell down the whole flight of stairs injuring my neck and shoulders as well as other parts, but less so!) The last 18 months to a year has been the worst, I had surgery on my frozen shoulder  which came about as a result of the fall - my surgeon said that all of the tendons, ligaments etc were 'traffic light red' and very inflamed, so I wonder if that exacerbated things? - then six months later I had a Hysterectomy and since then everything has hurt more or less constantly. It was only because I was looking to my brother's health problems that Lupus occurred to me, otherwise I would have just put it down to my age and been bashed about a bit from the fall and the physiological stress of two surgeries in quick succession! (My brother incidentally has renal symptoms amongst others which match Lupus or Scleroderma or possibly Vasculitis). As a trained nurse I'm the family go to person for medical problems. Typical nurse, though, look out for others and neglect myself!

      I shall look into the treatment you mention, at the moment though I'm in limbo until a specialist can make a diagnosis. Thanks again.

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