Avatar universal

are these symptoms a true represention of SLE?

WOW. just been reading through comments posted. I am new to internet, and forums, since reading i now know im not alone, had no idea lupus was this common. I was diagnsed about four years ago just before i got married but had a miriad of unexplaind symptoms for about five years prior to diagnosis. the first symptom i had was a deep red mark on my neck that took some explaining to my girlfriend at the time because it looked just like a love bite. Then an even larger one appeared on my waist about the size of a mans fist wich lasted for six months before dissapearing. at the time i was a builder and over a period of about four years i noticed that i was becoming increasingly more tired after work and during the working week, this feeling of fatigue and lethargy slowly crept up on me and began to rule my life, because i didnt have any energy left for family or social life. these symptoms were soon to be joined by others like aches and pains, joints and muscles and have got so much now that i had to give up work last year. it got to the stage that i could do a days work and would have to take three days off to recover as i was totally drained. even now a simple trip to the shops with my wife can see me wrecked for the rest of the day (completely worn out) thats the truth but i feel that people dont believe me and think im lying. I currently spend most of my time house bound because i now have a permanent red rash all around my neck and my forehead that is quite unsightly and im very consious of it. it never dissapears unless i use a protopic cream, but i only use it if i have to go somewhere special like a wedding or similar because it itches even more when i use it, so only use it when i really need to. the rash i have is also aggravated by ultra violet light so it doesnt necessarily have to be sunny, just normal day light  bothers me. I can only describe it as like a slug or snail needs to get out of the sun when uncovered, its not nice and i cant stand being in it even with sun block on. I dont know how forums work or even if what i write is visible to anyone, so if anybody can let me now it would be much appreciated. Jeff, fellow lupus friend
2 Responses
155701 tn?1230047101
Hi Jeff,
I'm sorry to hear that you are suffering so much. I go through pretty much the same thing as you do. It's hard to get people to understand that you're in pain and have overwelming fatigue with an "invisible illness." Even with the rashes, I have people tell me what I should use for rosacea, not understanding that what I have is actually malar rash from lupus.  It's taken a long time for my friends to realize that I cannot go play in the sun all day like they can, because it makes me sick. I came to the realization that I cannot hold down a job in this condition, so I've applied for disability. All I can say is, hang in there; you're not alone. Feel free to post as many questions or comments as you like. This forum is for people like you and me who need support and talk to others who understand what we are going through. Take care!
Avatar universal
Hiya maggie, thanks for your reply.
You know it doesnt half lift your mood when you get a reply from someone who is in a position to be sympathetic. my wife paula is very understanding of my condition and the issues it brings, but its not quite the same somehow. you know, its like, well not like, it is, having that look of disbelief or doubt on peoples faces when you tell them what your going through and why you are unable to join their activities. it so much makes you feel that they think your being anti-social or just plain boring. and then out of the blue you get to talk with someone like yourself who, well just gets it. all of a sudden theres no need to go through all that explaining of what, where, why and when because now your talking to a person who,at the mear mention of lupus is taken on the chin and understood. I too have just applied for disability and gained some help from citizens advice, so i think that should go well. At the moment im feeling a bit beaten up because we have had some very sunny days here in england lately and although thats a good thing for the kids and people having BBQs its realy hard for me to avoid it 100% so i do try to join in a little but find myself paying for it later. Keep your chin up and take it easy as we are on the same side. PS i too am a cat lover, nice pics. speak soon. Jeff
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