After reading a bunch of posts on here, I realize that I have a long road ahead of me.
My fatigue started a couple of years ago. It started mildly, and I was treated with anti-depressants after having CBC after CBC and thyroid after thyroid checked. Just last summer, I contracted shingles and my PCP was concerned wondering why since I'm only 31. She said it could be stress related, but also checked my CBC, thyroid, Vitamin D, and metabolic panel to see if anything was up. I had also still told her about the fatigue which by this time, was becoming more moderate. I was diagnosed with a Vitamin D deficiency (as well as shingles) and sent on my way with prescription Vitamin D. At the beginning of this year, the fatigue was progressively getting worse. I was still able to force myself up for work (I'm a registered nurse) but was walking around feeling like I was in a fog, exhausted and never felt well rested. A few weeks into the new year, the joint pain started in the morning where it was extremely painful for me to walk around after getting up from bed. I finally decided to go to a new PCP that was recommended to me and told her what was going on. She ran an ANA and a rheumatoid panel and told me everything was normal. However, the symptoms just kept getting more severe. I would literally (on my days off) wake up to bring my daughter to school at 7 (after going to bed the night before at 8:30pm) and come home at 8 and go back to sleep until I had to pick her up from school at 2. What I felt were migraines were happening 3-4 times a week. I called my PCP again and told her the symptoms were worsening and she sent me to a rheumatologist. The rheumatologist did a bunch of tests, and found that my ANA was now positive (1:320 and speckled), my vitamin D was still deficient, and my C-reactive protein was abnormal. She called it at that time a "lupus-like syndrome" since none of my other antibodies were abnormal, and I had no other organ involvement. She has started me on 10mg of prednisone to see if it helps and if it helps, she said she will start me on plaquenil and possibly start treating it like lupus. I am supposed to see her in 2 weeks. It seems like a "wait and see" kind of approach. The prednisone has dramatically increased my energy level and for the first week and a half, my symptoms were better- just some minor joint pain every once in a while.
So, after that long explanation...I have a few questions:
- This might be TMI, but the last few days I have gotten worse, with worsening joint pain, and I feel as of today that my fatigue is coming back. However, I just started my period and am wondering if that maybe involved somehow even though I've never quite felt this bad before with any of my periods. Can "that time of the month" cause symptoms to get worse even when on steroids? Or am I overreacting and this is just a really bad one?
-Also, a weird thing that I have noticed since going to the doctor is, my tears are actually burning my eyes. My eyes will water spontaneously and then the tears that form actually make my eyes burn, which makes my eyes water more, etc etc. Has anyone else dealt with something similar? I'm thinking it's some kind of dry eye situation because I've tried changing my mascara, not wearing mascara, etc and nothing seems to help.
It's nice meeting everyone here and you all seem like such strong people! I can only hope that I am as strong as you are and that hopefully someday soon, lupus or not, answers will be given to me. I haven't felt like myself in years.
Hoping for answers...