can some1 answer this plz

[SPONGEBOB]

hi i been told i have lupus how bad is it likely to get @ the moment im in a great lot of pain and sleep like 15 hrs a day if i dont get enough sleep i just fall asleep :mad: im only 15 yrs old i got given a info booklet but not much help in there plz help any1

[Clare.T]

Hello Samantha

I am so sorry about your pain and fatigue. They are both disease symptoms and hopefully will lessen when you are on effective medicines.

Please make sure you tell your doctors what you are going through. About the pain, many people find it useful to describe it on a scale from 1-10. Notice when it is worse and what type of pain it is , is it dull, nagging, constant or sharp. How does it affect your daily life with tasks like doing your hair getting dressed and so on

The fatigue is the symptom people complain of most and unfortunately one of the hardest to treat. But your body does need rest especially right now when obviously the disease is very active.
Pain is tiring too and it's lucky that you can sleep. With a bit of luck that will be less with time and treatment.

There is no way of telling how the disease will progress but the good news is that it isn't necessarily progressive unlike some chronic diseases.

For some people it stays the same, some will develop additional problems and some get seriously ill quite quickly with major organ involvement.
It would be foolish to down play the potential seriousness of lupus,
but there are lots of medicines these days that usually limit the damage.

I hope your parents are informing themselves and making sure you are getting the best available treatment. This is a tough time for all concerned. I suppose you are missing out on school as well.

Hugs

Clare


PS Please do not use these short forms known as text speak. We have a strict guideline about this. Standard written English is essential but we don't care about spelling or grammar.

[LolaLola]

Hello Samantha,
Clare has answered you very well. Just wanted to say Hello. Is your GP any help? Unfortunately not all Docs. know a lot about Lupus. You will learn very quickly.
My Daughter is 16 and probably has Lupus, she has APS. She manages fairly well as she has understanding friends. She hates talking about it but is getting better at that. Keeping up with friends can be hard, but try not to shut them out.
x Lola

PS I have Lupus, APS and a few other things and can sympathise with the time you spend in bed.