New Introductions

hey, my names laura, i have never joined anything lupus related before but decided to as im kind of sick of no one understanding why i look perfectly fine but am always ill so i thought it would be good to get in contact with other people with lupus . i am about to start my second year at university, no one else in my family has any sort of illness so needless to say it has been a steep learning block for everyone especially me and my mum as she has been with me though all of it especially in the beggining so this is my story haha, i have been being investigated since i was 14 on what was wrong with me, after a bone marrow biopsy and lots of blood tests, sleep studies and various other tests, i was diagnosed with sojgrens syndrome and possible lupus, i have been on plaquinel for the last five years amoung lots of different anti inflammatories, antibiotics etc, i saw so many different doctors and specialists i think about 9 or 10 and always got the response 'suspected lupus' but always 'too young to diagnose,' i was forever getting too young too young etc etc even though my saliva glands produce saliva the same as "a deteriorating 80yr old" recently i have been seeing only 3 different doctors/ specialists and have been told by my regular one "look you're on the treatment for lupus and you do have it ( i had platelet levels of 5 as well as being positive of ANA and another blood thing at 14, and fluctuating platelets since) but no one is willing to tell you so because of your age" in august last year i had my 7th general anesthetic operation, this operation was to repair an inguinal hernia which 3% of women get and again was met by shock at being 'only 19'. At first, before the actual diagnosis of the hernia i had one doctor tell me i was lying about my pain and symptoms as girls my age just dont get hernias, after the operation the specialist said the only thing they can explain for why i would have that type of hernia is weaker muscles due to my autoimmune condition which he still wouldnt state was anything but 'suspected lupus'. i also have rayunauds phenomenon, my main problems with my lupus is joint pains especially in my knees and elbows, although it doesnt help that the tendons in my thighs are too tight on the outside and so pull my knee cap in the wrong direction causing the cartlidge to wear away, i also sometimes get weird scab looking things on my face especially cheeks and nose which are aparently because of the sle and lose my hair which was a bit distressing going through the main teen years, i also have massive fatigue and get sick very easily, in year 12 with the days i had off school it added up that i missed an entire term of school that year, the thing i find the hardest is my friends just dont understand they try but just cant comprehend how they'll see me and i'll be fine and then a couple of hours later have to cancel plans coz i just cant go out its really frustrating because to them i look fine and in the past there was a lot of them just thinking i never went to school and bailed on plans because i didnt like them or whatever reasons they thought and it still is hard for them to understand what is going on no matter how many times they ask me about it and i try to explain what happens. anyway that was a massive rant and basically thanks for creating this forum it will be interesting to talk to others with sle

Hello Laura,
Welcome to the forum, we was not ranting, that is why we are here. The forum has been kinda quiet lately, but I want you to know you are not the only one. Im 45 and have sjorens, and sle lupus. I as well as you look perfectly fine, an for the most part, and very blessed not to be in as much pain as others. My levels are all wacked out like yours, and I have been on plaquinel for the last 4 years, even mixed with Methotrexate for over a year with predisione, for a really bad flare, in which i thought i would not make it, put it did pass.and Im still kicking. You just can't give up, at times you may feel depressed and just want to give up. Don't let the lupus take you over. Keep strong positive thoughts, and you will make it!! WELCOME ABOARD.. and that is what we are hear for.. to rant to each other!
Melody

Hi Laura,

I am so glad you decided to join us!

At times trying to explain lupus to other people when you look well is more frustrating than the disease itself. There is a website called: www.butyoudontlooksick.com. Read the Spoon Theory on there and it is a very good way to try to explain to family and friends about lupus and how we feel. I have to say that is one of the poorest excuses I've heard "too young to diagnose" or you are "only 19"!!! I hope you have yourself a new team of doctors. Always remember, it is your body and you don't have to do anything you don't want to. Your symptoms certainly sound like lupus or some other mixed connective tissue disease.

You really have had such a difficult time from a young age but I am impressed that you are in your second year of college. That is an amazing accomplishment!!

You can rant or rave anytime you want about anything. It helps us all to relieve stress sometimes or to just have a laugh. Again, welcome!

Hi Laura,

Welcome to the board!

Boy can I relate to no one understanding how you don't feel good since you look fine. LOL!! I'm glad Chris posted the website with the Spoon Theory because it is a neat story and if you haven't read it, a good read and one something we can all relate too. I agree, sounds like you have lupus to me, especially with a positive ANA, of course I am not your doctor. Feel free to vent as much as you like. That's why we are here.

Monica

hi thanks for the welcomes it is good to have a place to talk to others in the same boat, yes i have definately stuck with the doctor who actually has said i have it and that others arent willing to say so becasue of my age, i just didnt want to be on a medication like plaquinil unless there was actually a good reason! i will definately have a look at that story it sounds interesting, at the moment though im enjoying my last week of before uni starts after that it gets a bit hectic!! thanks again for the warm welcomes

hi guys,

im 24 and i was diagnosed (mid last year) with fibromyalgia, mild sle and IBS (2 years ago). about 4 years ago i got gall stones, and it's just been downhill from there! the thing is i don't really know what fibromyalgia or lupus is, to be honest. i've read all i can about it but nothing's really sunk in. i don't even know how they affect me really, like which symptom is from which illness, or what a lupus flare-up is and if i'm having one!

this may seem quite stupid, but all i know is that for at least the last 3 or 4 years i've just generally felt shitty. i was super excited to get my gall bladder removed, thinking that i would be pain free and 'normal' but apparently not! feeling sick and bloated, and tired, as well as the d-word became every day for me, and then i was diagnosed with IBS. theeen mid way last year i got magical swelling and bruising and pain in my right foot .. which after a few weeks went to my left foot too .. and after x rays and ct scans the dr basically told me it was in my head! another doctor later and im seeing a rheumatologist, have fibromyalgia ... may have lupus.. then about 10 months later my dr tells me i do have lupus!

soo i basically feel like i don't have lupus or fibromyalgia (though the dr's say i do) cause i don't really know what they are. i don't feel like i'm sick, although im always in pain and agony and feeling sick cause of the ibs and get swelling and headaches and can flu-like symptoms and all the fun stuff (and the meds have helped... plaquenil, mobic, panadol osteo and caltrate). i feel like i'm just being weak, and i beat myself up over being so weak, yet at the same time i can't stop 'being weak', so it's getting me down a fair bit. im a uni student and have the worst attendance, and im getting to the end of my degree and i need to work now to get experience and soon to start my career, but i sleep like 12 hours a day so im getting pretty stressed about starting my career and if i can do it!

basically i feel like i just dont know anything anymore, and its really getting me down! i have a super-supportive bf but i keep being a sad sack on him and i wonder how long his patience will last, and he can't really understand where i'm coming from, cause i don't even understand!!

hopefully some of you lovely people can help! (and hopefully my ramblings make sense to some of you!)

thanks, Karina

Hi Karina, well, the reason you feel shitty is because of the lupus. That is pretty much the way we feel everyday. That is the reason for your fatique too. You have to listen to your body and when you need to rest, it is very important to rest, or you will wear yourself out and put yourself in a flare. When you have a flare, you will know it, trust me. You will get very sick and it will be more painful. Your headaches and flu-like symptoms are more than likely caused from your lupus. These are very common symptoms of lupus. I have headaches everyday. Lupus has daily symptoms that come and go that we just deal with and the flares that come on that are much worse, which are brought on by stress and other factors. Try to avoid these things. If you need to take catnaps during the day, take them. It is very important for your body. Read this article called the Spoon Theory. It was written by someone with lupus to explain to her friend how she feels with lupus. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ Try and educate yourself more about lupus and fibro too. I don't know much about fibro because I don't have it. You're questions are not stupid, that's why we are here. It is also very common for doctors to be wishy washy when diagnosing lupus. It can take years for these autoimmune diseases because they can be so similar. But bottom line, don't beat yourself up for being weak, with a disease like lupus, don't push yourself so much or you will push yourself into a flare. Give yourself the extra time you need, your body will need it.

Monica

hi Monica,

thanks for the reply. yeah i know it's because of the lupus, i need to stop beating myself up about it, but at the same time i keep wanting to go back to 'normal'. it's quite frustrating cause im only 24 and i can't keep up with all my friends! i just don't want to let lupus/fibro take over my life, so i don't know when to let my body rest, and at what point to tell it to stop hurting/sleeping.. if that makes sense?? but i guess it's something i have to figure out.

i think it's cause i have 'mild sle' too, im obviously not suffering anywhere near as much as some of you, and as what i may feel like in the future (if lupus even progresses that way?? i dont even know!), so that's also why i keep feeling i should harden up a bit! i don't know.. it's frustrating.

i did read the spoon theory - wow! i will definately be keeping it bookmarked, so i can remind myself. im glad i stumbled across this page. look forward to keeping in touch

Karina

Hi Karina, you don't have to let it take over your life, but you do need to make adjustments so you don't get any sicker. I know for me, I can't keep up with my friends or family the way I used to and it is just something I have to accept. I like to drink wine and now I can't even do that anymore because somehow it really affects me and makes me feel like crap for at least a day or two. Sucks! sometimes I can get away with a glass but most of the time it is not even worth the risk so I don't even bother. But I am on some heavier meds that can affect my liver anyway so probably best that I don't drink anyway. All I can say is don't let it take over your life, because lupus/fibro is just a very small part of your life, there is so much more to who you are. Be positive and you may just need to change what you do with your friends. You may have to bring it down a knotch and listen to your body and see what you can handle. Do more nights in with your friends. Sometimes just a night in with pizza and movies I can handle rather than a night out on the town. Then other nights I feel good and want to go out. Also, if you are going to go out with your friends, try taking a nap before you go. That might help. Lupus is very frustrating I know exactly how you feel but remember, you may never progress anymore than you are now, you never know. Some people get control of their lupus with the meds and keep it at bay. The best thing you can do is educate yourself about it so you know what to expect and what your body is feeling. And I can't stress enough, don't push yourself. Rest is key!!! If you don't rest, it will catch up to you.

hello,

thanks for the replies Monica! its odd cause i think my symptoms have been worst lately, yet overall ive been better (emotionally, i guess). maybe im just coping with it all better at the moment.

i have a question regarding symptoms. i have these bouts where i feel sick in the tummy, get diarrhea, and i get really cold that i have to go to bed cause its the only way to get warm. it usually lasts for about an hour, 2 on a really bad day, of just alternating from the toilet to bed to try and stay warm. when this happens my back gets really sore cause i think my muscles tense up. i think its from the ibs, although it doesnt always make sense as far as food goes. the dr's always seem to ignore the cold part cause it doesnt really fit in, but its a big part of it. i get soo cold, and i dont know if the coldness is a cause or effect.. cause i think it happens more in the cold weather, but it also happens in warm too, but when it happens i freeze.

just wondering if this could be the lupus at all/ if anyone else gets these kinds of symptoms/if anyone knows what it could be? im going to bring it up with my rheumatologist but i dont see him for a few months so i thought id bring it up here n see what u guys think.

thanks, Karina

I think you are right about the IBS and the diarrea. I don't know a whole lot about that, but I know my daughter has it and she deals with bouts of that and ends up going back and forth to the toilet. But as far as the cold, I too get REALLY cold. Sometimes when it is in our winter season I swear I feel like it is 10 degrees colder than it is. My husband gets so irritated with me. I now sleep with 2 layers of clothes and still bundle up with blankets in the winter. Not as bad in the summer but we still fight over the thermostat. He is a human heater and I am completely the opposite. I have just adjusted and I take sweaters with me everywhere. I feel like an old lady. But at least I'm not cold. He always asks me if I brought my parka. LOL!! My hands and feet are always cold. I usually wear slippers year round around the house. I know other lupies that are the same way. I hate going to the frozen section of the grocery store because I get so cold. So you are not alone. You might want to check your temp when you are dealing with the cold spells though to see if you actually have a temperature. It is common to have low grade temps. And bundle up because you certainly don't need to be tensing up. Wear light under shirts at home in layers. That's what I do. It really helps. I have long sleeve and short sleeve. I understand the tensing up though, that's what I do too. I'm glad you are coping better emotionally. That is huge.

Monica

Hi Karina:

Welcome to the board! I'm so sorry you have to go through this being so young. It is difficult physically and emotionally, as well.

Monica has given you really good advice about how to combat some of your symptoms.

Rest is of the utmost importance! I can't stress that enough, either. You have to rest to heal and stress is another factor to watch. Try to be as stress free as you can. It's not easy but you will find out stress is so bad for us.

Lupus is so different for everyone of us. It mimicks other diseases and affects us all in different ways. Our reaction to meds varies, too.

As Monica said, educate yourself on lupus. There is a very good book by Dr. Daniel Wallace, "The Lupus Book" - I think it has a 4th edition to it.

Also, stay out of the sun! It is so difficult to do that - but the sun can harm us. It can start attacking our internal organs. Who would have ever thought the sun could hurt us so badly?

Try to live your life as normal as possible. We all "grieve" at some point, for our old life. But you will come to terms with it and begin to know how you can deal with this illness.

I hope you start feeling better soon and wish for many happy pain-free days ahead for you!

Hello Karina,
Welcome to messege board. Everyones advice is what I would say.
I am like Monica, I suffer from the cold. I tend to get the chills as you talked about when I over do it. Nothing but a warm bath, and my flannel pjs can help, even in the summer time.
Just rest as much as you can, slow down. and just take it easy. You will find out how much you can take. and then just go from there~
good luck
Melody

Karina
Welcome to the family, you are gettin some real good advise from some wonderfull girls.
even tho i'm a guy we go thru alot of the same issues with the WOLF (except for a few things)

Take care
Ray

hello everyone,

thanks for the advice! it really does help to talk to people who know what you're going through. im the kindofperson who likes people to think im fine, so i pretend like nothing's wrong, even to my dr sometimes lol! so its good to have somewhere to actually be open about it all!