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KaylaCough
04-07-2011, 02:21 PM
My name's Kayla. I posted something in the teens section. But I just turned 15. I started feeling pain about 2 months ago. I got really bad hip pains. So we went to the doctor and they said I either have lupus or the juvenile rhuematiod arthritis. I believe it is Lupus. I have brain fog, fatigue, joint pain, sharp pains randomly, shortness of breath, and just recently I get sharp pains in my heart that last for about a minute then go away. It has only happened twice so I'm not too concerned about the heart problem. I have a heart murmur on top of it so maybe that has something to do with it. I don't have the rash on my face.
I'm not totally sure which I have. My specialist appointment is June 7th.

ritzbit
04-07-2011, 02:52 PM
Hey Kayle I just posted on your post in the teen section but I thought I'd say something here too =) I'm glad you joined our WHL family! It sounds like you do have many symptoms that could possibly be lupus. I dont remember if your mom already said this but have you already had any blood work done? And with the rash, I never thought I did either. Always told my doctor I didnt and never thought anything of it until I realized I had been saying for years that I thought it was weird that I'd only get "sun burn" on my cheeks and over my nose lol Now putting on 100 spf I realize that is definitely not sun burn. That isn't the only thing that points to lupus though and there are many many people who don't have that rash. It is just a tell tale sign when you do have it that you have lupus. Make sure you keep track of every single ache and pain you have until your appointment so that you can tell your doctor everything. Write down everything no matter how small because it could be something they need to know or something that gets worse later. Keep us updated on your appointment!

Peridot20_Gem
04-07-2011, 04:03 PM
Hi Kayla,

It's nice to have you with us and at your age it's better to chat with member's of years of experience with either the lupus itself or symptoms that have been linked to it but never known till recentley, so it's nice to have you with us.

About your heart murmur my eldest sister was born with that also and she as occassional chest pains, i think that could be linked to murmuring of the heart.
Well i have joint and hip pain and there's so many of us with foggyness it's terrible but refering what other symptoms you have it sounds like Lupus, unless you have an autoimmune disease kicking the symptoms off. It's just a shame your having to wait till June to be seen, mind you these specialist like we to keep waiting, unless you have a good one.

Please keep we updated on how your feeling and you've got loads of support with us.

~Love & Hugs~ Terri xxx

tgal
04-07-2011, 05:30 PM
I ALWAYS forget to payattention to things that are in the teen section! I try not to reply there but I did so just blame it on the fog!! LOL

steve.b
04-07-2011, 05:46 PM
i am not quite a teen, turn 50 this year.
but i do want to say hi.

hi

KaylaCough
04-07-2011, 06:28 PM
Yeah the blood work's already been done haha. I always get burned on my cheeks and nose. Nowhere else. The rashc omes and goes or no? Yeah my mom's been keeping notes of whatever I tell her. It's weird getting headaches now too. I used to NEVER get them before. I also bruise super easily now.

I'm glad I have someone to talk to about this. Nobody at school knows about it or has it that I know of. My teacher told me that his dad and his grandpa had it, but that still doesn't help me because I can't talk to them about it. I'm glad I can talk to people who know a lot more about it than me.

Hi steve, I'm open to talk to anybody about this haha. I haven't found anybody who got it at my age though. Kind of a bummer to me.

ritzbit
04-07-2011, 07:49 PM
I know what you mean. I've been told at school that I'm lazy, mean, making excuses, whininy. You name it. People in high school don't understand what its like to deal with what we deal with every day, and they never will. And coming to that realization isn't easy. So you have to try to explain to them the best you can and thats all that you really can do. For me its a lot easier to joke about it than be serious about it all the time. Im a senior now and am trying to finish out the year, but I just missed almost 3 weeks of school. Feel free to talk to me about it whenever, rant all you want too lol I am not up often because of my legs so I practically live on my laptop =)

Saysusie
04-07-2011, 07:54 PM
Hello and welcome to our family :-)
I am glad that you are here and that you joined us. I just want to say something about your chest/heart pains. If you do have Lupus, there are conditions of the heart (Pericarditis) and lungs (Pulmonary Hypertension) that this disease can sometimes cause. So, please bring these symptoms to the attention of your doctor in order to determine if there is a problem (aside from your heart murmur), as both conditions are easily treated.
Once again.....welcome :-)

Peace and Blessings
Namaste
Saysusie

magistramarla
04-07-2011, 08:27 PM
Hi Kayla!!
I'm glad that you have joined us, and that you have found Ritzbit. I love your name, because I have a daughter named Kayla Sue. She's 26 and has a beautiful little 5 year old boy named Kyle.
I used to teach in a large high school. Try to seek out a sympathetic teacher or counselor that you can confide in. Because my disabilities were apparent, and I talked openly about them to my students, I had quite a few students with illnesses who came to me for advice. I often had to advocate for them with other teachers who weren't being very understanding. They tended to listen more when another adult explained things to them. Look around, and try to find that teacher in your school.
Hugs,
Marla

Peridot20_Gem
04-11-2011, 06:21 AM
Hi Kayla,

If your nose and cheeks burn easily always use 50 block when out and tried to avoid the sun as much as possible and that's also a great thing getting your mom to write down your sysmtoms for when you see the specialist.

You mentioned bruising quickly, have they tested you for anaemia as i used to be like that but since they've got me on folic acid tablets and b12 Jabs i hardly suffer from it now.

Terri xxx

Nonna
04-12-2011, 04:23 AM
Hi Kayla,

I'm 63 now, this all started for me when I was 14 or 15. Back then doctors shrugged and called it growing pains. They told me to do exercises to strengthen my muscles. At least they listen now and have better terms; at least theytreat teenagers now and don't brush it off.

Hugs and welcome to our family
Nonna