new to lupus

Hi to all,

I'm new to this sight too! I've been suffering with APS for the past 10 years and have now been diagnosed with lupus last week. My rhuemy was very matter of fact and gave me no information what so ever. she just doubled the dose of hydroxychloroquin. My headaches are unbelievable, and I get this weird feeling where I my whole body goes like jelly! But it's hard when you work full time and you don't know when to stop! Can you lead a normal life and work fulltime with Lupus? I just want to lie down all the time.

But hey it's nice to know I'm not alone.

7 Replies

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  • Hi Heda,

    some people can lead a 'normal' life with Lupus with occasional flares however some people have to give up work eventually because their health gets progressively worse and not all people with Lupus have the same symptoms. The only advice I would give you is listen to body and rest... you should consider putting plans in place incase you have to decrease your hours in work instead of just trying to keep going and then crashing into a wall. I did not follow any of my advice I just gave you and paid the price for it. Ask as many questions as you like and I hope you are feeling better soon.

    Have a good weekend, Take Care

    G

  • Hello Heda. Your body will eventually let you know it's limitations. Your mind may want to do something, but your body usually wins with lupus. When I was diagnosed I started work at 8am. Gradually my body said it was time to start work at 8:30 am. As time passed my body decided I couldn't start work until 9 am. Now I don't get to work until 9:30 am. I wish I could get to work earlier, but the exhaustion and weakness is what keeps me from getting out of bed on time. When I was first diagnosed it was the pain that began holding me back. Hydroxychloroquine took my pain away. Now it's my exhaustion and weakness in my arms in the morning. They feel weighed down and it's hard to lift them. I'm now working only 4 days a week. I wish I didn't have to work at all, but eventually I might not have a choice in the matter if that's what lupus decides for me. It's only natural to want to force your body to keep going like it used to, but it's better not to stress yourself out too much. Easier said than done though. :)

  • hi there heda your definately not alone, and as others have said listen to your body, if your tired rest, i have had lupus and rhematiod arthristis for 24 years now, i was retired back in 2004 because the lupus became to much and to exhausting to carry on working, over the years i decrease my hours of work, i was fortunate that the last few years my employer allowed me to work from home. although i no longer work i try and keep myself as active as i can, every afternoon i have a lay down i may not sleep but im resting, and that helps alot, i hope this has been of help to you

    keep well

    angie x

  • Hey guys,

    thank you so much for all your comments. mwah :)

    You lot are so wonderful! I will definitely be taking things a bit slower. The fatigue has been in my body for a while but i've just been fighting it and carrying on and pushing myself! Not anymore.

    Thanks again. Thinking of you all.

  • hi :0),

    sorry to hear your new dx.

    I have always worked full-time (& more-3 jobs etc), but last 4 years I started struggling-fatigue & weakness much worse etc. I'm currently unemployed :( (recently moved to a new area) & looking for work, not easy as most jobs have flourescent lighting, my Lupus fog gets worse & I know I'm not well enough to work full-time, but I need a job asap so will have to take what comes & take it day by day. Hope you keep on not pushing yourself TOO much, save some 'spoons'!!! good luck :0)

  • Hi-ya Smiler - it cannot be easy finding a job to fit in with Lupus! I was fortunate because I was close to retirement when the diagnosis came (altho I'm pretty certain that I'd had it a whole lot longer.....). Gradually, I had to reduce my hours at a busy Pharmacy as I tended to catch all the "bugs" bought in by customers, and always felt tired! Took voluntary redundancy at age 58, and worked for a while doing PC work from home.

    As you are new to the area - would it be a good idea to register with an employment agency? It gives you a good look around at what's available and up to a point, you can work hours to suit you. I do hope you find a sympathetic employer and also an open-minded GP!!! Love the pic......

  • I was diagnosed last June,and have been fighting it, didnt want my body controlling what I did, Have had alot of extra stress since January as My husband has been signed off with severe depression, and at work , two teams been amalgamated so having to cross train and learn new system, plus mother in law has just moved, I went to my GP, who signed me off for 2 weeks, because of the exhaution, and I have been signe d off for another two weeks. Not sure what will happen when I go back to work, or if I will have to reduce my hours, will have to wait and see. It has taken this last few weeks for me to know thta I cant keep fighting this, and that my body will decide in the end what I can do, take care and hope things sort out for you

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