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Old Feb 07, 2018, 10:56 AM
tsrc78 tsrc78 is offline
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Member Since: Aug 2017
Location: NC
Posts: 102
Elevated sed rates indicate there is some inflammation issue going on in your body, which is common with autoimmune illnesses. But because it’s a nonspecific test, doesn’t indicate any type of illness, doctors don’t know what to do with it. I’ve been suffering with “flares” of something for many years, that appear to be autoimmune in nature, and cause me great fatigue and joint pain, but since I don’t have classic symptoms along with obvious abnormal blood work, no one can tell me exactly what is going on.

I’ve been on that Merry-go-round for about 15 years. I always get elevated sed rates and now CRPs when I am in a “flare”, that are normal when I’m not. I get joint flare ups from too much sun exposure, get pleurisy, but negative ANA, so I don’t have lupus. I have occasionally had elevated RFs in the past, along with joint pain and swelling worst in my fingers and ankles. But sometimes it’s negative, and my bones aren’t disformed, so it’s not rheumatoid arthritis. The one positive blood work I have is the presence of the HLA-B27 antigen, which indicates some type of immune system dysfunction. But I don’t fit enough of the classic characteristics of the autoimmune diseases associated with HLA-B27, just general autoimmune symptoms and a classic symptom (SI joint pain) of one, but nothing on an X-Ray, so no diagnosis! It is very frustrating. But the one thing that is ALWAYS present in my flare ups is the fatigue. I don’t know if you have any other symptoms of any possible autoimmune conditions (and there are tons of them) but it may be worth looking into.

When I have to deal with people while I’m in a flare of a likely undiagnosed autoimmune problem, I try to explain the difference between being “tired” and “fatigued”. Fatigue happens when you are dealing with a chronic illness, tired happens when you stayed up too late one night. When you are tired, a few hours of extra sleep or a long nap cures all. When you are fatigued, you can sleep for 12 hours and never feel rested. Fatigued is when your body is so worn down you can barely move. Your muscles, your bones, feel like they need to lift 100 lb weights in order for you to move. If you are tired, you can sleep, while if you are fatigued, sometimes your body won’t even let you sleep! Basically, piss off if you are tired from staying up too late at that friend’s party!

It sucks, it really sucks, even more so when you don’t know what’s going on. I feel like that when I’m in a flare, but I also have a mix of tired/fatigued sometimes due to my chronic anemia that doesn’t even significantly improve after iron infusions. My doctors don’t understand how I even walk around with a hemoglobin in the 7’s range most of the time - the reality is, I don’t walk around much, because it wears me out, lol. I hope you are able to get some answers.
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