I was recently diagnosed that i have blood clots in my stomach and right lung. Now i am taking warfarin 6mg in 4 days and take 6.5 in 3 days. i have legs pain all the time, and i keep moving for 20 minutes at least during the day.
From my experience, I believe the foods you chose to consume can have a meaningful impact on lupus symptoms, but I have a relatively mild case of lupus. I read a book called The Autoimmune Solution by Amy Myers that I found to be informative. Since coming down with lupus just over a year ago, I've adopted many (but not all!) of her nutritional recommendations and I feel it's been beneficial. For those thinking about their diet, you might find this book useful (but of course always consult a physician before making any changes if you are very ill). I think its unrealistic for most people to adopt 100% of her suggestions, but if you adopt a good portion and stick with it, you might notice a difference. It's very difficult to make changes to one's diet -- it requires a lot of will power - but once you're in a new routine its much easier to stick with it if you are noticing a positive impact on your health. Please note I view this book as a tool to get smarter about nutrition and use along with (i.e. in addition to) your prescribed medications to achieve your optimal health. I hope the book may provide you with additional insights and possibly some additional relief!
I have the same problem, but so far seem to have been luckier than you ladies have been. I'm just on an aspirin regimine so far, but my diet is very clean and I take alot of vitamins. Don't know if that has helped, but that's what I do. I don't eat a lot of sugar and cook pretty much all of our food (more because of budget issues) but there have been some real health benefits.
One thing I haven't heard mentioned is the intermittent pneumatic compression device (IPC) that is used after surgery to prevent blood clots in people that are sedentary or off their feet for any length of time. My doctor immediately recommended I purchase one for home use and use them any time I am off my feet for more than 15 minutes and particularly during flares. You can get them through catalogs or at a medical supply store without a prescription for anywhere from 70-100 dollars. They are worth the money. They keep the blood flowing in your legs and make them feel better too. I would ask your doctor what he thinks about it. They have been very successful in preventing clots.
Also do any of you ladies wear compression hose? I hate them, but wear them most of the time.
Sugar is tough to to ween from when n all of the processed foods are filled with it... try regular fruits and veggies. Replace sugar with honey or agave. Only 26g of sugar content a day for an adult female/ make intake. Crazy but true we as humans consume over 90g a DAY! No wonder we are battling diabetes but strange they fault is for it when they make it accessible and legal.
Water aerobic exercise
Started trying to eat veggie cut out fried food and sugar