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Lupus sle

Bad day today, my Lupus is really active,my rash on my upper body the worst i ever had, my body aches all the time, and i am always tired, and my brain is frazzled all the time, and i have had Lupus since 2002, so fed up with it all.None of my meds are working and i dont think they ever have. they try me on on diffrent drugs but nothing gets any better i feel worse.All i want to do is sleep, and i cant, i just want to have a good night sleep, Sky

6 Replies

Dear Sky,

I do totally understand you. I have been diagnosed with this since 2010 and still my doctors couldn't control my lupus. I was in UK and my GP couldn't diagnose the disease at all and came back home for treatments. My doctors are brilliant and they are trying their best to settle me up. Unfortunately Im in a third world country and hard to treat with limited resources. I take more than 20 pills a day and still by body aches all the time just like yours. I hate my sleep pattern is so erratic and restless.I know I'm not as attractive as I used to be before...... I am not independent at all. washing dressing toileting all done with support only. What to do.....this is life. we have to accept.


what med s are you taking


dear sky, I totally understand. I was diagnosed 4 years ago, but I know I have had it forever!! I am having a bad day too!! I have about 30 blisters in my mouth and I have a low grade fever and the brain fog too. I feel so stupid around my kids. they know I have lupus but sometimes I think they just think its me!! no one know about Lupus. It is a very lonely disease!! The only person who understands me is my 4 year old niece. She excepts me for who I am. Thats pretty sad when a 4 year old gets it. and no one else.


That sounds about right this morning my 4 year old came into bed with me and said we don't do anything other than go out later when you have rested.. We are away the weekend so it will be resting as me pickle and Sennen have to get the bus to meet Mikey from work. this is one day we will be taking the buggy. Keep your chin up


Hey sky. totally know how you feel. I've had lupus for 18 years now and have good and bad days. Just had a bad weekend and am feeling really low at the moment. Hope they sort out the right meds for you soon x


Hi Sky... I understand just how frustrated one can feel.. My SLE was diagnosed in 1994, and like you every medication has been tried without success... Nowdays... I need assistance with everything from showering, dressing... to toileting.. and my medication has played havoc with my looks... I have gained and lost that much weight due to the large doses of Cortisone taken.. all without successfully alleviating the constant intense pain..

Sky, whilst I am unable to lessen your discomfort, I can offer you my Friendship and support... and please know that I am aware that having supportive friends with the same condition... does make one feel less isolated...

I live in Australia.. and am grateful for the on line support that is offered with Health unlocked..


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