Hi everyone! My name is Misty, I'm 23, and I was diagnosed with Lupus in September 09. I had symptoms for several years before that (mostly swollen joints and cases of tendonitis and sensitivity to the sun & heat) but none of the doctors really pieced it together. I finally found one who actually listened to my symptoms and didn't just throw Vicodin at me for my hand & shoulder pain, and he ran the ANA tests and all that fun stuff and off to a rheumatologist I went. Anyway, I've been taking Plaquenil, Prednisone, and powerful anti-inflammatories since then and I've been doing mostly okay. There's ups, there's downs, there's "omg whyyy meeee" moments. You know what I'm talking about.
My shoulders are pretty much ruined for life since they were inflamed for so long. The doctor told me the tissues & tendons can get damaged beyond repair because of that. I can partially dislocate both of my shoulders and then make them go back in the sockets whenever I want. Pretty weird! At my worst I had to take short-term disability from work for 2 months to see if my shoulders would get better (they didn't), and also because I was super tired all the time. I slept 15-18 hours a day for the first several weeks of that time off. Now I feel somewhat normal 80% of the time and I live like a vampire haha.
My super-fun symptoms:
Malar rash, frequent UTI's, frequent cases of tendonitis in both arms, swollen/red joints, plantar fasciitis, protein in urine, bursitis, high cholesterol, shortness of breath/tightness of chest, anxiety, fatigue, random fevers.
I've had a hard time dealing with all this stuff so I joined a few forums and created a page on facebook that sort of pokes fun at Lupus and the silly things I do at times. If you'd like to join that, you can search for "Blaming Lupus for Everything".
Anyway, didn't mean to write such a long post! Looking forward to chatting with you guys!
I'm Rob, one of the moderators here at WHL. I just wanted to welcome you to our group! If you have any questions about the various functions and features of the site (we have a bunch), don't hesitate to ask. We're a pretty laid back group, so don't be afraid to jump into the conversation in the forums and in the chat room. Make yourself at home!
Welcome, I hope you like it hear as well as I do. I have only been here a couple weeks myself, but have thoroughly enjoyed it. My situation is a lot like yours I was diagnosed about five years ago. I was older than you when I started having severe symptoms, I am 36 now. I feel for you starting this journey so young, you seem to have a mature view though. I wish you all the luck, and best of health.
You sound exactly like me. I just turned 24 yesterday and have the same problems, same symptoms, everything you listed is pretty much my life story as well. I too was diagnosed in 2009, with Rheumatoid Arthritis, and they also think I have Lupus as well but they are not certain yet, but it's there in my file as part of my problem. I take an antimalarial, prednisone and regular pain killers as well as anti depressants to help keep my mind out of the dark area. I have damage in my hands and wrists (I've had surgery once), as well as chronic persistant bursitis in my left hip that has me walking with a cane a lot of my days. They also have the idea of Sjogrens Syndrome floating around, although it's falling farther and farther back in the list now.
I am not working and am waiting on a decision for permanent disability, as I am in so much pain and so fatigued every day, that it just won't work for now. I too am always fatigued, always running a bit of a fever, have raynauds, every single joint in my body from head to toe swell and cause me pain, the morning stiffness drives me crazy...It is always the worst. It makes getting up hard and with overall everything makes life pretty tricky for me. I hate having the combo but I trudge on, living life!
You can message me any time in a PM if you like, and you'll lalso ove this place, everybody on here is wonderful.