I am wondering if anyone out there has found any relief from the daily physical discomforts of this disease - exhaustion, muscle tenderness, lack of energy, general heaviness. I feel like I am eating CONSTANTLY (every 2 hours)- and not junk - but never have anything to draw on to exert myself. Other than water, I am not gaining weight, but I feel like my body, at 145 pounds, is working to carry around closer to 300 pounds of weight. I am winded after climbing 1 flight of stairs, and my heart is pounding. Are there vitamins or minerals, some special diet, more sugar, more salt, less fat, more protein, - - I don't know - I have been off dairy for a short period and that seemed to help with the eyes swelling and flushing of my face (part of the SCLS or not - I never know!) Any ideas? Has anyone else experimented with diet?

I have all of the same symptoms as you. I don't think that facial flushing is listed under symptoms and it should be. Today at work when I looked in the mirror my cheeks were berry red and I am self conscious about that and the periorbital edema. My actual eye balls swell not just around my eyes. Thanks for mentioning about the facial flushing. Judy

I am so relieved to hear that I am not alone! Every time I feel something new, I wonder if it is a symptom of, or result of, this disease - or possibly completely unrelated. It was good to find this site to know what new to watch for, too. Before, I had no idea what new crisis might arise, and now the scope has narrowed to just a handful of things - still scary, but I don't feel so powerless anymore. I haven't noticed if my eyeballs themselves swell - I will watch more closely. I am thinking about tracking everything again, before I go to NIH. I have contacted them, and my records are all down there, but was told they are working on a better protocol for the specific SCLS study. Not sure how long before I will go - very anxious, though. I have stopped caffeine, and have noticed a difference in how I'm feeling - thank you for that bit of advice! Kim