It's has been a while since my last post. My dad ended up getting really sick memorial weekend. He had to have emergency surgery and i thought i was going to lose him. I thanks God everyday he is better. Thw 8 days he was in the hospital i went on little to no sleep, i hardly ate, and was stressed beyond belief. Amazingly I didn't get really sick and I was able to be there for my dad. A week after he got out of the hospital i crashed. I got shingles (for the second time in 6 months) and just felt like crap. Before my dad got sick I was fighting extreme fatigue. I was falling asleep at work. Anytime I would sit or lay down I would fall asleep. I was always fighting to stay awake. So I talked to my rheumatologist about it. She is a new This or for me. This was this was the second time I saw her. I tried explaining to her that the fatigue getting bad. This is what she said to me and i quote "fatigue is just a symptom of lupus and because the serious issues you have are under control (my kidney function was good) there is nothing I can do its just a symptom you will have to deal with" I was baffled. I tried talking about options but she wouldn't even talk about it. I left there crying.
So my questions are:1. Have you ever had a doctor tell you they couldn't treat something because it was a smaller issue in their mind? 2. How do you deal with fatigue? Does anyone else have issues with finding a good doctor?
I am going to see a new rheumatologist. My primary recommended one for me. I just have to make the appointment.
Any advice you can give will be wonderful.
Yes, I had a primary care doctor say that every symptom I was struggling with was "perimenopause." I wanted to perimenopause her!!!!! Granted, I'm in "that" age range, but the extreme fatigue, the dryness, the pain is more than typical perimenopause symptoms. Needless to say, I fired her.
The best advice I can give, is to call your local hospital and ask for a referral for a doctor that is experienced in autoimmune diseases. It might mean a little bit of a drive, as my favorite doctors are an hour away, while that primary care doctor was just two miles from my house, but it's well worth it. Also, if there is a lupus organization in your area (Lupus Foundation, Lupus Alliance, etc), call them and ask for a referral. They will have many many local resources for you.
Good luck!! Remember, doctors work for US; we don't work for them!!!
(And I meant to say, but hit reply too fast, that I'm praying for your family and for you, and sending many good thoughts!)