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Coping Day-to-Day?

kmiclon Message
16 Apr 2009, 09:24 PM

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?
judithdavis3 Message
17 Apr 2009, 03:44 AM

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
kmiclon Message
17 Apr 2009, 01:42 PM

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