View Full Version : Hi, I'm new
04-09-2004, 11:14 AM
Hi everyone. My name is Anna and I am 14 years old. About a month ago i went to the doctor to get a medical pass to get out of swim during gym class (I'm allergic to chlorine) and the doctor i saw noticed that my hands were purple-ish in color and asked if they were usually like that. I told her that they were and i had never really had another doctor notice it before though either. She told me that i had Raynaud's Syndrome and explained it to me and so of the other diseases that are related to it. She told me that Lupus was one of them.
I hadn't really thought about it much until last week when we started talking about autoimmune disorders in my biology class. I remembered what the doctor had told me and i started looking more in depth about what lupus is.I noticed that i had experienced many of the symptoms, but i had just brushed them off thinking that they were stress related. My joints have been hurting me horribly for the past few months, especially my knees, up to the point where i stopped playing basketball for my school. I also get rashes a lot, but im allergic to lots of things so i just guessed that they were allergy related. I get horrible migraine headaches also, and i always feel cold even though it could be almost 80 degrees. I get night sweats and fevers often too. My parents havent been very supportive of me, and they seem to think that its all in my head and they want to take me to a shrink because they think that im making all of it up. I was just wondering if you think that Lupus seems like a possibility or if it is just something thats in my head.
You all seem like very nice and helpful people and i hope that you can help me.
04-09-2004, 03:12 PM
Hi Anna Bannana,
I went through the same thing when I was young. It took me forever to get diagnosed because of the same things your going through.
A "Rhuematologist" specializes in diagnosing Lupus. Maybe you can talk to you're regular doctor about refering you to one. At the very least you can tell everyone that it's to put you're mind at ease. (And how could that be a bad thing)?
Also, you may not have Lupus, you may have something more minor. Example...Raynauds Syndrome.
I hope everything works out. You're so young to have to worry about such things. Keep in touch and let us know how everything goes.
04-21-2004, 07:05 PM
It's never fun when people think you are making things up and it's my pet peeve when people say "it's all in your head." Now, going to a therapist can be helpful, for sure, but it sounds like you have a lot of symptoms, which could be a number of different things. Maybe you could talk your folks into making appointments for both a therapist and your Doctor again and ask your Doc to do some bloodwork for autoimmune diseases. They should refer you to a Rheumatologist if things come back looking fishy. You might start writing down your symptoms, too - it will be helpful for you to track and for the doctor for diagnosis. I know it helped my sister a lot - she was just 19 when they told her she had Raynaud's and Rheumatoid Arthritis. A couple years later, a Rheumatologist realized it wasmild Lupus, not RA after all. I have Lupus, too, but we have different symptoms and problems.
I'm thinking of you!
04-24-2004, 07:18 AM
Welcome to our forum! This is the place where no one will ever tell you that "it is all in your head". We are here for you, to support you, to listen, to answer your questions and to give you information!
I hope that we be helpful to you!!
Peace and Blessings
04-26-2004, 02:16 PM
Thanks for all your help.
I talked a little bit about it with my parents but they still seem to think that im just making it up. I asked them to take me to a Rhuematologist, but they said that i didnt need to see anymore doctors. Ive been having really bad migranes for the past few days and nothing seems to be making them better at all. Does anyone have any tips about how to make my Raynaud's attacks clear up quicker, because it is really embarrasing when they happen at school. Thanks for your support and help.
04-27-2004, 07:59 AM
1st - If your parents will not listen to you...let them read some of the posts on this forum. Download information from Lupus web sites (Lupus Foundation of America) and let them read that also.
They MUST understand that the only doctor who is qualified to treat persons with auto-immune diseases (such as LUPUS) is a RHEUMATOLOGIST!!! For them to refuse to do that for you is like sentencing you to a life-sentence of one illness after another!!
Your parents need to be educated.....Perhaps you can even call a Lupus Support Group in your area and ask them to help you educate your parents so that you can get treatment with a rheumatologist!
2cnd: Are your teachers aware of your diagnosis and of your Raynaud's? If so, they should allow you to leave the room in order to run warm water (not hot) on your hands and fingers. Everyone suggests that you keep a pair of fur lined gloves handy..but I know that can be embarrasing in school (especially on a warm day). Try friction (rubbing your hands together to generate warmth) or placing them under your armpits. I keep little pieces of fake fur in my pants pockets and often will put my hands in my pockets, rub them against the fur until they get warmer.
Maybe someone on this forum will have some better ideas for you to deal with Raynaud's at school.
I wish you much luck....and do not give up on your parents. Continue to insist that they learn about LUPUS and that they allow you to see a rheumatologist!
Peace and Blessings
04-27-2004, 03:40 PM
I tried using gloves, but some of my teachers wont let me wear them. One of my teachers has been really nice about letting me go to my locker to get sweatshirts or gloves, but most of them wont let any students leave the classroom at all. We get a lot of bomb threats at my school so unless its an absolute emergency we arent allowed out of our classrooms. My gym teacher is the worst though, i currently have 11 days of gym to make up. Most of the time i have to sit out because me knees bother me so incredibly much. And i dont have any more sick days left so now i have to trudge to school no matter how crummy i feel.
My parents are still being stubborn. They dont think its a real disease and that i just make myself be sick so that i can get out of doing things at school and at home. My dad said that he might make an appointment for me to see my regular doctor once school is out though.
Thanks for your help
04-28-2004, 07:59 AM
When you go to see your doctor, ask him/her to give you some information about LUPUS for your parents to read. Also, ask him to give you a letter explaining your diagnosis so that you can take it to your school. If you cannot go to your locker, ask if you can go to the nurses office in order to deal with the Raynaud's. You especially need the doctor's note for your gym teacher so that your grade will not suffer because the teacher is being unsupportive.
Also, like I mentioned, download and print as much information about the disease as you can and let your parents read it. You can even print some of the posts in the forum and let them read them!!One of the things that we, Lupus sufferers, have ALWAYS hated is people who tell us that we are making up our symptoms, that it is all in our head and that we don't look sick! To me, those have become fighting words (in other words, I want to slap the person who says it!).
You have to FIGHT for your right to be taken seriously, you have to fight for your right to treatmemt, you have to fight for your right to be believed. Lupus is a henious disease and very much misunderstood by those on the outside. Therefore, it is up to US to fight for ourselves. We cannot be passive!!!
We are here to support you in any way that we can...but do fight for you rights!!
Best of Luck
Peace and Blessings
05-04-2004, 07:47 PM
Amen to that, Saysusie! And, unfortunately, many people with chronic illnesses suffer at school like Anna.
Anna, my brother is diabetic and has an insulin pump, which is attache by a very small tube that goes into his skin. It's way better for him than taking shots! Anyway, he was taking a PE class in COLLEGE and the instructor said "hand over your pager", assuming that his insulin pump was a pager!My brother, the smart aleck that he is, says "Sure, if you really want it" and hands over his pump. Of course, the guy realized it was a medical device and never bothered him again!
My sister has Raynaud's and is finishing her Master's Degree right now. When you get to college, if your Raynaud's interferes with note-taking, you might be eligible for services for someone to take notes for you. Colleges offer a lot more services to students than high schools, through Disability Services. So there is hope for understanding in your academic future. Hang in there! I would suggest making appointments to explain to your teachers, or ask the school nurse to explain, Raynaud's. Also, you could show them when you are having an episode. I know the first time I saw my sister's white fingers I was shocked! So, they might realize the severity if they saw it in action. One year, I bought my sister those "instant hand warmers" for her pockets for Christmas. I think you just snap them and they become warm instantly!
Good luck, Anna, we are rooting for you!