Hi

[Eddie1970]

I've just been told I have lupus

[sarahsch]

Hi Eddie1970,

Sorry to hear you have Lupus. How are you feeling about it?

There is loads of helpful & reassuring advice from fellow sufferers here. Take a look on the Lupus UK website also and download their leaflets for the newly diagnosed. It helped me.

Sarah

[Eddie1970 in reply to sarahsch]

I hate the feeling of being tired all the time and not being able to do things because of the pain

[sarahsch]

I wonder if you have started on any medication yet.

I take hydroxychloroquine which has helped a great deal. It has made the symptoms milder & lessened the tiredness which makes everything else easier to cope with. It can take sometime to work though.

Hang in there!

Sarah.

[Eddie1970 in reply to sarahsch]

Not started medication yeyy

[johare]

Hi, I must agree with Sarahsch. Its a blessing and a curse getting your diagnosis, but once you have at least you can start on a plan of treatment and care. The best advice I can give for the tiredness is is to pace yourself. Do things in small bites and change from brain activities to physical. Go to bed at the same time and try to get up at a set time even if you haven't slept well as your brain needs to get into a pattern of sleep. It helped me but took time. The pain and fatigue come hand in hand. So once the doctors get your medication started use your pain relief well it will help the fatigue. Have a look on this site there are lots of helpful leaflets to read and always someone to answer questions.

[Paul_Howard Partner LUPUS UK]

Hi Eddie1970 ,

Welcome to the forum. I hope that you find it a useful source of information and support. Have you been unwell for a long time or has your diagnosis come about quite quickly?

If you need more information about lupus and LUPUS UK you can request or download one of our free packs at lupusuk.org.uk/request-info...

If you want to chat to more people with lupus, in addition to this forum we have regional support groups (find your closest at lupusuk.org.uk/regional-gro... and trained volunteer telephone contacts (I can provide you numbers if you would like).

Please keep us updated with how you are getting on. If you need anything, just give me a shout.