Feeling horrible today.

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?

Lynnwood said...
I have to agree with the directions from the ER - see a rheumotologist ASAP. They are the Drs that specialize in Lupus and other auto-immune diseases. They are the ones who will be able to diagnose and treat whatever is going on with you. I'm sure that identifying and treating your disease will ease your pain, so maybe pain medication can be greatly reduced or even stopped.

Lupus itself isn't diagnosed by any one specific test. It is identified by having at least 4 of the 11 known lupus indicators. Check out www.lupus.org for more details.

Let us know how it goes.

I looked at that site a few times before this post even, i've been reading up on all the information on lupus. What do you mean by indicators? do you mean symptoms?

couchtater said...
There is a list that rheumatologist use to diagnose lupus. There are 11 items (indicators) in the list. You must meet at least 4 of the 11.

Are you wearing sun protection? Most of us feel worse if we are exposed to UV light. Sources of UV light are sunlight, fluorescent lights, tanning beds, CF bulbs, and halogen bulbs. Try wearing clothing with sun block in it or sunscreen.

I hope you see a rheumy soon and can get an answer for you, honey.

I havent been wearing it recently, but last summer i did because i love the pool and when i went even close to the sun i could feel it, like a burning sensation and my skin would burn. Not immediantly, though, but after about 30 mins to 1 hr. Now most times when i look at the reflection, or even the light it gives off, it gives me a headache. also other lights bother me as well. I can't sleep unless all the bright lights (like the cable box or the tv power light) is off. Where can you get sun protective clothing?

Ray1234 said...
Hi Sparkly, I just wanted you to know that you are not alone. I have a 14 year old daughter that had a positive ANA test. We have an appointment to see a rheumatologist. Our doctor thinks it's Lupus, but we'll just have to keep our fingers crossed and live life to the fullest. Many people have auto immune diseases and still live long comfortable lives. You need to see a doctor so they can narrow down your issue and treat you properly.

I'm going to be going in a few days. Thank you.

The sense of being angry because you can't do the activities your friends are participating in hits you hard even at my age. When I started this journey with Lupus, I had to give up my favorite pastimes one by one. I remember being extremely angry and jealous of friends who could still backpack and ski. It made me depressed to the point that I wanted to give up. I realized in one of my darker moments that I had lots to live for. I found activities that I can do, like walking and knitting and gardening. As I have been getting older, I am experiencing more arthralgia and having to modify what I do even more. For me, there is so much to live for. I discover gifts every day, especially from the kids that I work with at school. In many ways, they are the breath that sustains me. You sound like a brave young girl who is going through so much right now. You have come to the right place for support.

Laura