Hello all! My name is Megan. I am 22 years old and I live in sunny south Florida. I was diagnosed with systematic JRA at age 11. It began with a regular cold and turned into consistent fevers that lasted about a year. I was so sick I couldn't finish my 6th grade year, dropped 15 pounds and was in and out of the hospital in total, 4 times. My diagnosis was from a skin biobsy due to a itchy rash. It was indeed, JRA. So my rheumatologist put me on methotrexate and predisone. I was on a high dose, 160 millograms, so I had to be weaked off. I remember taking many pills on a Saturday night and spent all Sunday morning throwing up. This happened for about a year, until I started feeling better. Since then, my JRA has been in remission.
Just wanted to say hello and I'm here to find support and help. I live in a fast pase enviromnent and alot of people really don't understand why I'm a little laid back and don't go out the door every minute and have to do something. People my age go out till 5 o 6 in the morning and if I do that, I feel so bad the next day. My entire body aches and I have to sleep for many hours a day in order to feel better. Does anyone have any experiences like this? I have to sleep for about 10 to 12 hours a day in order to feel better. Anyone else have symptoms of constant tiredness? Any advise?!?
Hey! I know exactly what you mean, im 18 and have JRA since i was 8, I cant stay up late, its hard at school when peope stay up way late, for me late is 11, ive gotten better and do stay up till 12 or 1 ocasionally but then i feel bad the next day, i need a lot of sleep, otherwise i get sick. I dont know what to do about it other then to get the sleep I need, i do what I have to do, if it means going to bed at 9 ok. Im hoping that once Im on a med that works my fatigue wil be less of an issue, dose 2 of enbrel is tomorrow im hoping it does the trick!!!I completely understand what you are both talking about. I'm 25 and was diagnosed with JRA when I was 2. If I stay up until 10:30 I'm proud of myself. I'm at the age where a lot of my friends and family are getting married. When we get to the reception everyone has a blast dancing. I'll go up for a song or 2 and then have to sit for an hour so my ankles stop hurting. I do feel somewhat lucky that I was diagnosed so young...I don't remember not having JRA. It's nice to know that I'm not the only one feeling this way!
Unfortunately, I know how it is to feel not having JRA. I was in competitive gymnastics since I was 5. I was diagnosed at 11 and its so hard for me sometimes. I wish my body was not hurting so I could go back to being normal. I refuse to take anything for it too. Thats most likely my problem. I'm too stubborn.
I get so sick if I stay up late too! Since the beginning of the year, I think I've ad about 5 colds- all bad. I take vitamins and exercise but its just part of JRA- bad immune system. I still love my life- for the most part :)
I was dx at 8, and although thats much older then you shannon, I do not really remember not hurting...at least i dont remember how it feels not to be thinking about my joitns and stuff. i also did competetive gymnastics I think it was really good for me, it kept me moving im thinking that without gym i would be much worse today! I dont do gym anymore but I still dance, ive had times were i had to sit out of a performance but for the most part i dance regardless of how my joints feel. Although most practices i would sit out for just warm up dances and then participate in the actuall practice, i needed to save my joints for that, so i would have some energy and less pain. but yeah. Im so tired right now i have so much work to do but im just going to bed! haha typing this isnt helping with that any, but its too stressfull to do the work!!! this is gonna be a crazy week! i know what you mean! ive had times when i couldnt dance in a performance and because I couldnt they had to take out another dancer cause the choreagraphy needs an even number of dancers! i felt so bad, i couldnt dance, but i didnt want to impact others....