Posted 8/5/2014 8:25 PM (GMT -7)
It's sounding like the fatigue bug has hit you really hard. I suffer from extreme fatigue too. In the beginning my Doctor gave me a drug that is used on folks who have narcolepsy and it helps keep them awake through out the day. Well it helped me for about the first 3 months and I was back to sleeping close to 16 hours daily.
Now, I have only one child and she was 8 years old when my official DX came in. So, she could understand at that time I needed to sleep and rest. I found that pushing myself to get up and do things actually can make my health worse. REST is a huge thing with lupus, we need lots of it, as well, as a healthy diet, light exercise, and most important listen to our bodies. When it tells us to stop, we should stop period.
I know you really didn't want to hear that but, until you get your lupus under control those are things you need to do. Remember lupus patients vary from mild to severe. Some patient never need medication and others it looks like a hospital room.
As for the blood clots, I'd try not to worry to much about them if your standing up, sitting and walking around then you should do fine. I managed to get two different blood clots in areas that are so rare that my Doctors can not believe it. Most folks get them in their lungs (PE) or legs (DVT). Well, my first one was in my IVC (inferior vena cava) this is a very important area it carries blood either away or to the heart. My second one was in the SVC (superior vena cava) this one is right in the middle of my chest.
I had no idea I had these blood clots and I'll be on blood thinners the rest of my life. The one in my chest was found when they went to put my mediport into me.
I know everything is overwhelming in the beginning and you have tons of questions, please ask away there are lots of great folks here to answer your questions. I've had lupus for 27 years and have been on steroids every day for over 14 years now.
Hang in there and come and vent anytime you need to, or just ask for help with questions. Take care and I hope that you get to start feeling better really soon. Oh on a side note, my BP normally runs about 90/60 sometimes lower. I on occasion get some dizziness but overall my body seems to have adjusted to the lower reading.
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.