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Old 05-24-2011, 06:19 PM   #4
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Re: Is it Fibro? Recently Diagnosed, still very confused

Your symptoms are similar to some of mine (mouth sores, hair loss, fatigue, dizziness) and I was misdiagnosed with fibromyalgia. I fired that doc and went to a new rheumatologist who ordered a skin and lip biopsy which came back positive for SLE and Sjogren's Syndrome even though my blood tests were (and still are) negative. My new doc doesn't believe that fibromyalgia is a good diagnosis to give without testing everything possible because many people like myself are misdiagnosed as the doc did not feel like doing anything more than blood tests and the answer was in a biopsy. Do you ever get rashes or sun sensitivity? I have both and they were able to test the skin with the rash on it. I also get hot, swollen fingers and toes and the joints hurt and are stiff (especially stiff in the mornings) I also have dryness (eyes, mouth, skin...) from Sjogren's. But I doubted my fibromyalgia diagnosis mainly because I have never had muscle pain and no tender points (the stupid first doc just didn't get a positive blood test so she tried to brush me off with a diagnosis and an anti-depressant which I did not want and it caused a horrible reaction because I am not suppose to take those I guess). If you are uncomfortable/uncertain about the diagnosis I would continue seeking answers until you are comfortable with the doc and diagnosis. I also have had a continuous headache for about 20 years and they sometimes become migraines. I rarely take any meds unless it is absolutely necessary because a few years ago I took way too much all the time just trying to dull the pain which in fact was making it worse ( I felt better after stopping all meds for a few weeks but the first week was horrible.) Good luck getting answers, its a long and difficult process.