Newbie here and have a long road ahead of me. Advice please.
My name is Amber, I am going to be 28 in AUG. For about 4 years, All i can remember is pains and aches and surgeries and moments of helplessness. I recently have been searching for answers and surprisingly found this website. I am so glad to find people that relate to me. I did find another SLE message board but I couldn't really connect to the members post and threads. This one grabbed my attention right off the bat with " The spoon theory".
Anyhow, when I was a very young child, about 4 years old I was diagnosed with Psoriasis. Ive been able to manage it most of my life with sun heavy oils steroid creams and bag balm but the past 4 years things have changed. Even more so the past year. I started to get bad joint pain.
Started with shoulders, I had two surgery as a result. Then all my life i was told i wasn't able to get pregnant and they couldn't tell me why. I ended up with an ectopic pregnancy. It was agony but after four months of treatment i finally had surgery to resolve the pregnancy. 3 years after the ectopic I ended up with a miscarriage.
Now i should probably tell you at this time I was living in Oregon. Im a LPN so being painful make my 8-12 hour shifts on my feet very difficult. I started getting back pain, then hip pain, then knee pain, and then feet pain. I thought that was due to my job so didn't think much of it. With it being winter in oregon I started having really bad hand pain. At work having to constantly do meticulous procedures with my hands that required a lot of dexterity i assumed my hands were just tired. The pain only continued to get worse. After all the aching and constant pains I thought i was ready for a new environment. SO my family and I decided Arizona was going to be our new home. With the sudden decision to move it took some time to get our affairs in order.
While waiting to move i started having a lot of GI problems. Test after test and agonizing pain again finally was diagnosed with NAFL disease. the news kind of hit me like a ton of bricks. Then i was told i had IBS. which i had figured that much with the years of anxious bowels LOL
well right before i moved I had an appointment with the GI doctor who was checking my liver elevations and decided to do an ANA test as well. He informed me it came back positive. I asked him for what and his response was its too hard and too much time involved to figure it out. So i never had the answers I needed. Shortly after i moved to arizona and things got a little better for a week or so. Then one day after laying out in the sun ( which I've done since i was 4 due to psoriasis) made me super ill the next day. My hands hurt worse than ever and my palms of my hands burned. I got this horribly bumpy rash on my forehead and cheeks. I felt as if i was in the iron man contest the day before and in all actuality, I had just mosied around the house.
the stress went up due to the move and new bills and a mortgage much higher than before and awaiting my nursing license transfer. I started getting migraines, hair started falling out in clumps, starting getting weird bruises on my legs in places i never bumped. each time i went out in the sun within seconds i would feel like my legs and chest were on fire, like literally in flames. When id come in id have this weird fishnet red skin pattern that i never had before. I started to do research and go over my blood results and this is where Ive landed.
and FYI auto immune runs in my family.
Sorry for the long introduction. I see my new doctor tomorrow and am very nervous. Im not going to go in telling him what i think obviously. I will just let him know my symptoms and go from there. Any advice would be much appreciated. Thanks.