ok guys i dont know how forums work. i can barely navigate my way around facebook! i guess im just not too computer savvy... so if im not posting this in the right place i apologize!
i was diagnosed with SLE last week and have been researching the disease hardcore, but im not finding any straightforward answers... maybe yall can help me.
1. my appetite has been destroyed. sometimes i'm really hungry and other times even the smell of food makes me sick. but ive noticed no matter how much my mouth says yes, my stomach always says no. what i mean is that if i eat too much, i throw it all back up. so ive been only allowing myself to eat small portions whether im still hungry or not because if i eat even one bite too much i'll start puking. i've lost a lot of weight because of this, and its starting to worry me. the past 4 yrs ive been between 170-175lbs. now im down to 150lbs and while im happy i finally lost my tummy and i look great, i know the weight loss is unhealthy and im worried ill keep losing more weight. lots of the research ive done says ppl gain weight with SLE but has anyone had problems with weight loss?
2. my hair is falling out! i know this is a symptom of SLE and some sites say prednisone will help stop it, im on 10mg of prednisone a day, but i love my long pretty hair!!!!! i dont use chemicals in it, no hair spray, no hair straighteners or any other heat damaging devices, i dont dye it or perm it... basically i wash and condition it every other day and brush it often. is there anything i can do to make the hair loss stop? am i going to be bald or have extreamly thin hair? will my hair loss be noticeable to others?
3. i missed my period this month. ive read that many women with SLE have abnormal menstrual cycles, some skip their periods for months then have 2 month long periods. and they have flare ups before their periods. my period has always been pretty regular... until this month. this is the first month ive missed. i know im not pregnant, i have no sexual partners. im not too worried about missing my period, im worried about getting my next one. many women say their periods are worse with SLE, and my periods have always been bad, even before i was diagnosed. does this mean my bad periods are going to get worse? i used to use birth control to regulate my periods and keep cramps to a minimum, but when i was put in the hospital i skipped a few pills and decided not to start again till i got all the other meds the doctors gave me under control. my body always takes a bit to get used to new meds. i haven't started my birth control up again yet, should i go ahead and start it or is that a bad idea? can i even take birth control with SLE?
4. define flare up. i keep reading 'flare ups' everywhere, and i dont know exactly what that means. some days are good days and i feel normal with maybe a random ache here and there. some days i hurt all over. some days i have extreme pain in one particular joint (last week my knee decided to hurt like i broke my kneecap or something. i couldnt walk at all that day. the next day it ached a bit but i could walk just fine.) there are times when i feel good all day, then later that night i get dizzy and throw up and feel like hell. sometimes ill get what my mom calls muscle spasms. a muscle in my shoulder will start cramping and it'll move to my neck then ill have a killer headache. the pain gets so bad im crying and freaking out banging my head on a wall. ill usually puke and put a heating pad on my shoulder. the attack only lasts 15-30 minutes and then im fine. so which of these do we consider flare ups?
5. im always burping. ok that sounds weird but its hard to explain. anytime i drink anything, carbonated or not, i get air in my chest and its painful and uncomfortable. like when you drink something too fast and swallow some air, it gets stuck in your chest just under your breasts, and you have to drink a few slow sips to get it to come back up... like i said hard to explain. the point is i get that air there no matter what im drinking, even water. you shouldnt burp while drinking water! ive tried drinking out of bottles, through straws, ive tried warm drinks and really cold drinks... doesn't seem to make a difference. does anyone else have this problem?
6. chest pain. it hurts to take really deep breaths and i know that's a symptom of SLE as well. my doctor upped my prednisone mgs to help it go away. i dont have problems when im sitting upright, but when i lay down is when it hurts. i can lay on my back no problem, and most of the time i can lay on my stomach too... but i haven't been able to lay on either of my sides without a sharp pain in the left side of my chest, just under my left breast. and anytime i bend over my entire chest gets really tight. is this normal? does anyone else have this problem? any tips on how to decrease the pain? ive always slept curled up in a ball on my side and now i cant sleep on my sides at all, so its been really hard to get to sleep at night because im just not comfortable. will this laying down pain go away?
7. excersize! many sites say excersize is good for ppl with lupus. i used to go out and run a mile or two a day, but now just taking my dog out to the courtyard to potty wears me out. really anytime i raise my heart rate i get extremely tired. so if i try to work out its just going to tire me and i dont see it doing much good for my body. and im kinda scared to do any weight lifting. say i do a few reps working out my biceps... well then the next day my biceps are sore of course. i dont know if ill be able to deal with sore worked out muscles as well as the normal aches and pains of lupus. so what kinds of exercise are recommended for those of us with SLE?
8. last question... for now
when i am having a bad day, it looks like im having a bad day. ill be walking my dog and have to sit down randomly in the grass to take a break cause i get so exhausted. or ill have to sit down and take a break in a store while shopping. now if you randomly sit down in the middle of a grocery store isle, people are going to ask if you're ok. what do i tell them? i dont wanna say, 'i have lupus, ill be ok in a few minutes,' because thanks to the TV show House, people have heard of lupus but dont know what it is. and since they've seen the outrageous things that happen to ppl on House they're going to freak out when i say lupus. so if i have a dizzy spell or a muscle spasm or randomly get sick and start puking... what do i tell the strangers that are around me? my friends are a little more understanding, they all know im sick, but i dont want to go through a long explanation of my illness with every stranger i get sick around.
im new to this disease and am still figuring out how my body reacts to certain situations but any answers or insight to my questions would be extremely helpful.
thanks so much!