View Full Version : hi everyone:)
06-02-2009, 09:30 PM
hello everyone, my name is vaani an i am 15yrs old an well i am pretty new to this site an have so much things to say an questions to ask an hopefully you can help me out.well i was reading many of your posts an is so intrested in them because i am related to in in so many ways, anyways let me start telling you about myself more,i am not diagonised with lupus but have so many syptoms related to it in so much way an go through so much too,i have so much pain all the time an its been going on for quite a while now,i have gone to the doctors alot an took alot of blood tests but they say i am fine an my body seems healthy but the thing is that its not an i need so much help an my family dont have any idea how i be feeling even though they try their best to help, i wake up evey morning askin a question what is wrong with me an just wish some one can hear my story an tell me up front what i have though i know thts not so easy but i would like for some one who has lupus to answer my ques an tell me how long did it take them to know that they have lupus an if they can help me in anyway. the only things that i saw when i was looking up info for lupus is that they say it is mostly inherited but no one in my family have lupus so i dont know,an they say yew also get rashes but i dont really get rashes like that but i know that i do have pain eveywhere and feel helpless alot an tired alot an have realy bad cramps in my hands an foot an just feel like i have no life an cant do things that i would normally do as a teenager:no: but iamam tryin my best to have control over my self even though i cant like go some where an have to much fun cause when i get home it gets worse but anyways thank you for readin the most i can say right now about my situation an hope you can help me an tell me about how you found out you have lupus an how long it took.thank you
06-03-2009, 04:37 AM
I am sorry you are suffering. As for your question, it took me three years and three different doctors to get a diagnosis. Lupus can be a very difficult disease to diagnose. It is very frustrating to feel so poorly, yet to have your doctor say that your test results look fine. This happens often with patients who eventually receive a lupus diagnosis. It may take some time for symptoms and blood test results to indicate the presence of the disease. Have you seen a rheumatologist? (These are doctors who specialize in diseases like lupus and rheumatoid arthritis). If not, it might be a good idea to make an appointment with one in your area. If you and your parents need more information about lupus, you can find out more at the website for the Lupus Foundation of America by clicking on this link
Keep us posted. Others will be along to welcome you and to offer advice shortly.
Hugs to you,
06-03-2009, 12:16 PM
yeah well i did take alot of tests an the rhumethoid one too but they say that everthing is fine but i dont know what to do,i have another appointment to the doctors on the 19th or this month an they say i have to have like a pediatriction to have a follow up with me so they say see whats wrong but i know that there is still one blood test an ANA test that is still been pending like for 3 weeks now so i am just waitin to hear the results
06-03-2009, 12:49 PM
Hello and welcome to you my friend.You just keep strong and we will try and help you deal with doctors and hep you on what to say...may take time....but at the end hopefully you will get the help you need.
For me....i am still undiagnosed.
2004 went to Tunisia 3 times.I used to travel the world,very active,never ill,then bang.Got sick twice then flue on the last trip.
Doctors said id had a nervous breakdown.No treatment.
Doctors said i was depressed.....put on anti depress which made me ill.
Doctors thinks its M.E Chronic fatigue syndrome so i do the f.i.n.e trials.
2005-2007 a bit of a blur as i became so ill hair loss,depressed,panic attacks. and memory loss..friends left me...felt so alone.
Dec 2007...had tried to keep working but insomnia set in bad,exhausted,feel sick,body hurt so bad....felt noone believed me and work was giving me more n more to do and they treated me with a bad attitude.
Dec 6 2007- stopped working.
Feb 2007 - June 2009_ Just stayed in the house too afraid to leave.Dont sleep that often,friends dont bother much with me.Had lock jaw lost a tooth and cracked a few.Last month had a jaw op and injections in the jaw joints.Been told i have to loose 2 more good teeth to ease my pain. Now they have said twice i have Lupus and then NO when the bloods come back so they say its chronic fatigue syndrome again.Swelled up 2 weeks ago,legs like tree trunks,face like a false mask,elbows huge..oh the fun.2 days ago diagnosed with Fibromyalgia...taken 2 pills and now deflating at last.Slowly but im getting there.
Doctors have treated me with contempt and ignorance....i hid away and stopped seeing anyone.Members here helped me gain my confidence...i fought back.Changed my doctor and he seems a bit better.
You find out who your freinds are when you get sick...so dont worry....good riddence if it happens....you then find 'true' friends who care aboutt YOU!!
You keep fighting...and we''ll try to help ya.Im 39 years old in a 90 year olds body :) xxxxxxx
06-03-2009, 02:24 PM
thank yew! well i am the same way with by body,everyday i wake up i fell like i am in a body that is 4 times older than me so iamma 15 an fell like iamma in a 70 years old body:(,but anyways i am tryin my best to take care of my self an my family is trying to help me too even though they dont know what i am going through:huh:
06-03-2009, 02:31 PM
I know its a difficult time right now....but the Doctors will hep you in time.Glad your family help you...they'll understand you,even though they dont know the answers.xxxxxxxxx
06-03-2009, 02:36 PM
yeah well i hope the doctors help fast cuz their not really helpin me tht much,soo idk whats gooin to happen
06-03-2009, 02:39 PM
Many members will post here soon...bet they'll help you with good advice.While your waiting have a look round.We have our own Arcade and if you click on community then social group we meet up there too! We'll sort this out ...just hang in there.
lots of lovexxxxxxxxx
06-03-2009, 08:07 PM
i am so sorry that you are going through this time of wondering "what is wrong with me." Unfortunately, it is part of the diagnostic process for lupus and other auto-immune diseases. We will all try to help you figure things out, and hopefully we can help you find ways to feel better.
you say the rheumatologist said you were fine, but i wonder how he did this if the ANA lab test were not back. When you see the dr. on the 19th, he may have further information for you. Be sure and ask him for a copy of your lab tests, and we will help you learn what they mean.
i recommend that you browse around the "symptoms" section of this forum, and that you write down any of the symptoms that you have or have every had....even if they are not bothering you right now. make a copy of the list and take the dr. his own copy....he can put it in your file, and study it later if he needs to.
Lastly, i see you live in California,,,, please read the different threads about sun exposure and how to protect ourselves. The sun really makes lupus flare up and can be really bad.
good luck, stay with us and we will help.
06-03-2009, 10:37 PM
Sweetie...welcome to the best support on the net... in my opinion. :cute:
I'm so sorry this has hit you and while you're so young too. I'm nearly forty and still not diagnosed...but I've had this problem for a long time. Off and on when I was a child and teenager... from age 35 to now it has only grown worse.
Phyllis makes a good point...if the ANA isn't back yet, the doctor is assuming it seems. Don't be too disappointed it if comes back negative. That doesn't mean anything either. Lupus is very sly and hard to catch, along with other Autoimmune diseases. Not everyone has the same symptoms as everyone else.
A lot of good advice has already been given and more is coming. Please also make sure you don't get too stressed out. Stress is an agitator to your condition. It sounds like your family is supportive and that's so good. You need all kinds of loving and supportive people around you.
Hang in there...more posts are coming and more advice. (((((hugs))))
06-03-2009, 11:47 PM
Hi Vaani :)
Im 19 years old, and i was diagnosed with lupus 2 weeks ago. For me, it only took 1 visit to a rheumatologist to be diagnosed, but some people it seems have years of doctors before they are diagnosed.
I think you really need the ANA test back, as it seems it is one of the most important tests for Lupus (even if if comes back engative it could still be lupus though).
With you wondering about the rashes though, i dont have any rashes at all and i still got a diagnosis, as others have said, everyones symptoms are different...
I hope everything sorts itself out for you as quickly as possible...
06-04-2009, 02:55 PM
well thanks everyone for all your advice i am so glad that i atleast have people to talk to about my situation,because even though my parents r trying to support i always be feeling like where do i belong,i know that i am 15 an all but i do have problems an i get stressed out really easily.I just moved to california so the sun here is a new thingh to me too, an the weather is really weird here,an i am not custom for it to be so hot but i am gettin use to it an trying my best to take care of my health but the thing is that i have no idea where i stand right now cause any medication i take for my pain and cramps an head aches an like everything i am goin through none of the medication works for to long when its prescribed to me, so that what iamam scared about too,an i wonder if this is going to happen all my life but u dont know what to do but thank you all for your support an for standing by me,an hope you keep on replin to my messages for advice:no:
06-04-2009, 03:11 PM
Welcome! So glad you found the site and are writing! My heart goes out to you! So young and have to endure this! Any age it's a lot to deal with as your whole life changes and you wonder when did you get on this ride called Lupus cause you never stood in line for it! I know I didn't!
Feeling pain is the worse but it does pass. You just have to be consistent with the meds, write down anything that is out of the oridinary that you know pre-lupus is strange but now maybe an indicator of something else??? AND mostly no stressing...I learned the hard way that stress causes flare ups! Also...when you are not feeling good don't allow anyone into guilting you into doing something that physically you know you just can't do...I learned the hard way as well but now...I just say NO...not today or I am in the bed and I rest when my body says to rest. I go out or participate in working out or hangin with family friends when I am up to it.
I know you will find the answers, support, comfort and love you are looking for on this site just as I have. I have made so many wonderful cyber friends on here.
Welcome again and I wish you health and remission!