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Thread: i have so many questions!!!

  1. #1
    Join Date
    Jun 2010
    I was born in raised in Austin, Tx but am currently and living in Tulsa, Ok for school.
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    Default i have so many questions!!!

    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!

  2. #2
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Hi PPSpaz,
    Welcome to WHL! You've come to the right place to find people who understand what you are going through.
    Some of your symptoms sound familiar to me. I also have problems with indigestion, and I take a prilosec daily. I wonder if that is part of what is causing your loss of appetite?
    I can't do too much exercise, either. Just do what your body tells you it can stand. I mostly like long walks with the hubby.
    Problems with the menstrual cycle, endometriosis, etc. seems to be common with autoimmune issues. I had some pretty strange issues with them when I was young, but did fine while I was having and nursing babies. I'm at that point in life when I'll be glad when they end for good!
    As for telling people - I use a cane, so its obvious that I have some mobility problems. I have a mixed bag of autoimmune issues, so when people ask I just tell them that I have autoimmune issues - sort of like Lupus. Most people are pretty understanding and try to help - especially when I fall, which I tend to do. I used to teach high school kids, and I explained my issues to them the first day of class. They were very understanding, and were very protective of me in the crowded hallway. I fell in front of my classroom fairly often, but the kids would help me up and we would go on with the lesson.
    I'm sure that some of our experts will come along to answer your questions much better than I did. Look around the site, read the stickys, and read threads that interest you. You will probably find a lot of answers to your questions.
    I've lived in both Oklahoma and Texas. We were stationed in Ok City at Tinker AFB over 20 years ago, and we lived in San Antonio for 17 years - at Lackland AFB.
    Keep coming back to join the conversation.

  3. #3
    Join Date
    Dec 2008
    Blog Entries
    Thanked 94 Times in 83 Posts


    Just to say hello and welcome also.Wow you so sound like many here,so glad you found us.I'll catch up with you soon.
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  4. #4
    Join Date
    Oct 2006
    Salem, Utah
    Thanked 7 Times in 7 Posts


    Life ..with Lupus.. is like a box of chocolates, you never know what you're gonna get. And that's on a daily basis. I can have days when I wonder if I'm cured, and days when I wonder if I'm getting worse. Up, down, Back, Forth, round and round and round, its like a carnival ride, scary, unpredictable, and sometimes it makes you puke. Glad you found the rest of us Lupies.

  5. #5
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    Welcome to a strange new world. The good news is that you have found a place where there are people that care and that have been through it. There will be others that come along that have much more information than I and they will be much more helpful than I but I wanted to stop in and greet you.

    Lupus, and most autoimmune diseases, go through flares and remissions. They don't go away but sometimes they are worse than others. When they are acting up it is called a flare. It sounds like you are in a flare now. The fatigue (one of the most common problems), GERD (indegestion), hair loss, and a multitude of other things can define a flare. The problem is that it is different for each person. My symptoms may be completely different than yours and Angel's may be completely different than mine however you will find people that have many of the same ones that you do.

    Come by, talk to us, let us know if new things come up. We will be here for you as you travel down this new road

  6. #6
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hello and welcome to our family. All of your questions are legitimate ones, it is just that we cannot give you definite answers because Lupus affects each person differently. So, what may be one persons response to the symptoms you describe, another person my respond completely differently.
    It does sound like your lupus is quite active right now and is, therefore, causing you several disturbing symptoms. The hair loss is something that many of us have experienced. There is no way of telling you how much hair you will lose. Treatment with Plaquenil and Prednisone do usually help the hair loss. But, it does take some time for the drugs to work. For most of us, our hair did eventually grow back. This too, took a period of time, so we had to resort to wigs, weaves, hats, scarves, etc. until the re-growth happened.
    Marla gave you some suggestions that might be the cause of your inability to eat, the fact that you burp, and your weight loss. This is definitely a matter that must be discussed with your doctor in order to find the cause and prescribe treatment.
    Just as Lupus is different for each person, so is our flare-ups. But, generally speaking, a flare up is when your symptoms worsen and/or new symptoms appear. Generally, some of you lab results will confirm if you are in a flare up (also described as your disease being active). Each of us experience some form of flare ups and then we have periods where we are not as sick. We do not always experience a period of time when we are completely symptom free (remission). That does happen to some, but not to all of us. Mostly it is periods of illness or periods of severe illness.
    Your chest pains should be something that you make sure you advise your doctor of. Lupus causes inflammation throughout the body and this can also happen to the sac surrounding the heart and lungs. These issues can be serious if not treated. Make sure that you bring this issue to the attention of your doctor.
    Exercise is very important. However, if your disease is active right now, I understand that it can be difficult to exercise regularly. Try doing light stretching, seated leg lifts, working your arms using canned foods as weights, etc. If you have access to a pool, try doing easy movements in the water. You will find that, if you exercise, you will have more energy.
    We are here to help you in any way that we can and as much as we can. I am glad that you found us and I hope that you stay for a while.

    Peace and Blessings
    Look For The Good and Praise It!

  7. #7
    Join Date
    Mar 2010
    foothills of carolina
    Thanked 9 Times in 9 Posts


    Sorry about the diagnosis.. lupus is not fun that is for sure. I have had some of the symptoms that you describe. I have learned to take each day as a gift. I do what I can when I can. I try not to push myself and to get rest every day. A nap is my best advice. I simply cannot function if I dont take an hour to rest.
    This is a good place to come to and the people on here care and their advice has been really helpful. It is great to have a place to come to and people understand. Best days ahead for you is my wish! Billie

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