Lost and confused!!

Hi, i am 36 years old and still trying to come to terms with the fact i have this sle lupus etc...I've read some of your blogs and other bits on the net but am still confused....I find it hard to talk to people because its so hard to explane how i feel and being so young it really dont feel right lol ...After a year of hell i was told last year i have sle lupus, my whole body was on fire i looked like i'd been in a fire from my face to my feet the scares you can still see...skin is better but face still not clear i wear a hat 24/7...This summer was good cause not much sun but found it hard to stay in from 11-3 everyday when i got 2 young children....I've also got artritis, raynads and problems wit my kidneys...These things do my head in but my biggest problem is energy, how do i get more energy its so hard, the pain i deal wit like you all do!! After nearly a year on 65mg of pred i'm now on 5mg pday but still on 400mg of quineric( my spellings great i know sorry) ...Hope your all havin a good day and hey smile xx

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  • i know exactly how you feel. I'm only 39 but feel like an old wifie!Worst thing is tiredness and total exhaustion some days and when you have someone saying how can you be tired when you've sat and done nothing all day, it doesn't help! I'm on 40mg pres just now so have huge moon face which gets me bit down but hey ho if meds help then it's worth it. On 3000g mycophenolate now so pres being reduced so hopefully puffiness will go down and I'll start feeling and looking like me again. All we can do is think and try and stay positive even on bad days. Keep smiling! :D

  • Hiya, I'm 24 and got diagnosed with sle a few months ago, my main symptoms were the aches and pains and it got to a stage where I could hardly walk. I'm on my meds now but have just come back from gran canaria and found it very difficult to cope with the no sun part of sle, all I wanted to do was go in the pool and sunbathe and go for nice walks but I had to cover up and stay in the shade and I got upset. I totally understand how you feel but I've come to learn my health is so important. Keep smiling.

  • hi, i am 32 and was diagnosed when i was 18..it is very difficult to come to terms with having lupus, i still have my moments when i feel the 'why me?' creepin up on me..i find the hardest things to deal with are the lack of control, and other peoples attitude..i get the facial rash bad and people can be very ignorant. like lucy86 i hate the no sun rule, i have had both hips replaced due to high does of steroids (and after 10 years they are needing re doin) ...luckily i have a great support network (inc several fellow lupus sufferers) who make the bad days more bearable...feel free to get in touch if you need to chat x

  • Thankyou al so much, the sun thing is hard lol never been so pale ...pprincess my hips are bad but thought it was down to this arthritis (Spelling lmao)..You are so young and sound like you've had a hard time and there is me only had to put up wit this for 2 years lol... It all seems so unreal.. So please tell me how do you get more energy?? I went back to work say 8 weeks ago and working two nites a week as a karaoke dj but it kills me for the rest o the week ...Do you always find yourself saying sorry but i cant im just to tired to people?? xxx

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