Hi. I'm kind of new to this site, but i think i need a place to talk and learn to cope. I have possible lupus, in my family on my dads side all the lupus tests came back negative but the doctors said it was in the family of lupus. I'm having ALL the symptoms and my mom possibly may have it too because she's exhibiting symptoms.
My pain is the worst symptom/problem. It hurts like crazy and normally its up to a 5 on the pain scale. Right now my ankles, hips, thighs, shoulder, elbow and arm muscle, plus my back and wrists, are all throbbing. on my arm muscle it feels like a bruise when touched, the way a bruise feels as in the pain feeling. I believe i have raynaud's disease, when i put my hands up and my hands and arms turn white due to the blood draining downwards, my fingertips remain a bright red. Everything is hurting really bad and i don't know what to do and what to turn to. My pain triggers my depression, and since pain is something that occurs every day, i'm mostly depressed every day. I have not been diagnosed yet/nor tested, but even if it isn't lupus, it has to be some kind of disease in the lupus family or another autoimmune disease. Even typing this now hurts.
If it is lupus, most likely it will be a form of lupus that started when i was really really young. Maybe even neonatal lupus, but when i was and infant, i was fine other than the butterfly rash on my face.
So i don't know. I've had it for a long time. I'm 13 and i hate seeing other kids being able to do so much, and me barely even being able to think. It's like the pain is a barrier stopping my mind from being able to think.
I'm even thinking of dropping out of school (i'm homeschooled) because 1. It takes a huge toll on my mom and me trying to get me to do schoolwork, then failing because i can't think, I'm repeating 6th grade and might have to repeat it a THIRD time, and i'm really getting nowhere.
So i don't think i can keep this up. it seems dropping out would relieve one of the things that is breaking us down right now.
Yes, I do realize i won't be able to become a doctor or get into a good profession, but the way my pain is progressing now, with me having to use a wheelchair/cane ALREADY, i'll most likely be wheelchair-bound by the time im 15 or 20. So a profession really isn't the most important thing going on at the moment.
I'm just having trouble. Is there any tips you could give me to cope with the pain? I went to the ER last night because the pain was so bad i was screaming. They gave me pain pills and said to go to a rheumatologist quickly. I don't think i can take much more of this, it's gotten so bad.
Please, any tips?