Hi I have recently been diagnosed with lupus after years and years of pain and problems,

will I ever get a nights sleep, is it normal to have pain and swelling almost daily, recently if I go out in the sun parts of my face start bleeding, I havent spoken to anyone about this problem as I dont want to bother the nurse or my gp as I think they will think I am moaning over nothing.I hate the feeling of not being in control and not understanding why/whats happening to me.

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  • I have pain and swollen joints 24/7 and if I go out into the sun I end up with a rash that if I don't get it cooled down I scratch and then it bleeds really easily but not straight away. I would say that I always take a notepad with symptoms almost a diary of symptoms with me and tell rheumy the works. With an increase in symptoms get back to your gp or rheumy to get a review would probably be best. Hope you get some help soon :-)

  • thanks for the advice I have been taking photos of the swollen legs etc for a while also the rashes,I will now keep a diary and write any questions down for the next 2 weeks till I next see the rheumy. Hopefully someone somewhere will come up with answers and a remedy for all us luppie folk

  • It may sound obvious, but are you using a 50 factor sun block? Use it even on a dull day. Also try and avoid going out when the sun is strongest, between 11am and 4pm. Use a sun hat and wear long sleeves. You may be doing all this already.

    I more or less get continual joint pains and often feel very achy too. I sympathize with you and I hope that things will soon be better for you. Hope that you have good medical support and understanding.

  • Just had the though have you tried the clothing that have built in sun protection I have several shirts that I use over everything. My shirts are crag chopper. They are great never get itchy or rash with these and sunblock.. hope you get on well at rheumy

  • A big thank you to all I now have factor 50 sun screen a big floppy hat, my glasses are also now reacator lights and will be looking into clothing with the built in sun protection, all of which I have never done in the past so it will be very strange at first I guess but am so desperate to get 'well' will try anything.

  • I would advise going to your GP not waiting until you see your Rheumatologist they may be able to prescribe something for your skin, Don't be afraid to go to the Drs or see the Nurse if you get all your symptoms catalogued they can see if they add up to anything imparticular. It is handy to keep a notebook or diary of your symptoms too for the Rheumatologist, also to list questions that suddenly come to mind so that you remember them to ask ( good if you have brain fog!) I have just had my first reaction to the sun have never had a problem before but sat out for a while about 5pm the other day thought it would do me good! Think I'll just stick to the vitamin D now instead! I hope you feel better soon

  • Hi I have been taking a daily dosage of 400mg since 2003, the only side affects i have had is decreased vision every 6 months.

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