D..
T., I'm so sorry to read this. It is frightening and nerve wracking to have medical problems that you can't seem to find an answer for.
I have 3 suggestions. One, find a rheumatologist. A good rhematologist is like a regular doctor's diagnostician. Often, they get the "hard cases" that doctors can't figure out. Some rhematologists are also internists. That helps as well, though it's harder to get an appointment with them because they are so booked.
My next suggestion is to buy a juicer (research them well before purchasing - ease of cleaning is a big deal, so make sure you notice that - read lots and lots of reviews online.) Put vegetables in the juicer and drink it every day. It's kind of expensive, but it is very worth it. You must get your fiber in another way because juicing removes all the fiber.
You also need to eat adequate protein. Greek yogurt is a good way to get it (look at the protein grams - there are some Greek yogurts that have 22 grams of protein per serving.) And to flush out the fluid, you need to DRINK fluids. (Perhaps that seems counterintuitive, but it's true.) You need WATER. Don't drink coffee - that works against you. Did your doctor tell you how much water to drink? Make sure it's at least 48 ounces a day, but I think that half you weight in ounces would be good (check with your doctor, though - don't just go by my suggestion.) Hydrating first thing in the morning, as soon as you get up, is also very important.
I really think that what you put in your mouth needs to be your first line of defense here, as well as getting a rheumatologist involved.
My 3rd suggestion is to exercise. Start with gentle stretches and work your way up to walking. Even if you are marching in place in front of the TV to get your heart rate up and moving your limbs, it will help. When you sit, put your feet up so that the fluid isn't pooling in your feet.
I agree with the Shaklee lady that taking supplements helps. Just don't go overboard with it. You need the REAL food going in your stomach to provide most of your vitamins.
Please update us in your quest here. We're rooting for you to find the answer!
Dawn