Recently diagnosed with Lupus.

darrenodarreno Member New Member
Hello all. My name is Darren. I am 51 years old. I am an RN as well.  My first attack was two years ago. I reached the "perfect storm" that everyone talks about. I was overweight and severely stressed out. I was not getting any sleep and had severe anxiety. Then I caught a very bad flu, and WHAM! I had severe GI distress and lung and heart inflammation, and I could not breathe. I immediately developed tongue sores that I have had for two years. Over the next 8 months, it proceeded to get worse. I developed liver pain that I have had for two years as well, and I also started to lose my hair. I have been to 10 specialists in the past two years. No one even mentioned lupus. I am so disappointed in our medical system. It is a joke. I could not get anyone to help me. I had several ER visits and hospital stays as well. My symptoms seemed to get better somewhat over the two years, but I always had the liver pain and extreme fatigue. I thought that I was on my way to recovering, so I went to visit my grandkids, but I tried to start working again, and I was under alot of stress and not sleeping, and then I caught a virus from my grandkids, and WHAMMO! Major full systemic attack. I have never felt so much pain. I had severe pain in my muscles, nerves, joints, and bones,(bone spurs grew out in the weaker areas like where I had several surgeries on my knee, and my sternum, where I had open heart surgery to replace my aortic valve in 2005),  as well as inflammation in my heart, liver, and lungs. I was very worried about my artificial heart valve getting damaged, and I was in terrible pain, so I went to Mayo Clinic Hospital ER and explained my situation, and they sent me home. What a joke!! Doctors just don't listen or communicate with each other anymore. If it is not something that they can see on lab or imaging tests, they just blow you off like you're crazy. They tell you that this is not their area of expertise and push you off on someone else. It is just now starting to subside after being on very high doses of prednisone, hydroxychloroquine, and mycophenolate for the past month. Luckily I told my primary care doctor to put me on prednisone before the most intense part of the attack, so this helped prevent any further damage. I really should have been in the hospital, but I had to fight through it at home. Also, Prednisone causes anxiety and insomnia, and I have noticed that this makes it much, much worse. It is a vicious cycle. I hope that some of you may relate to my story, and that it might help you in some way. Keep up the fight! I am just beginning my journey, and I still have many unanswered questions, but if I can be of assistance to anyone, don't hesitate to reach out.

Thank You and God Bless!
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