My symptoms began in May 2011 with small painful lumps under the skin on my forehead, which quickly spread to the rest of my head, then down my neck and into my body, I could actually feel what I thought a 'virus' spreading through my body. After several trips to the doctor I was finally referred to a rheumatologist who I saw in the September, I was diagnosed with all of the above and given steroids. My ESR levels were 130. Every time the steroids are reduced below 5 my ESR begins to rise. I managed to stop taking steroids for 3 weeks but my ESR went up to 58 so i'm back on 10mg, but I still feel really ill, some days I can't even lift a cup, I have no energy, no strength, the easiest task is an effort to perform. But I don't have the 'Hip Pain, Shoulder Pain' that everyone talks about, what I do have is an all over 'Burning' especially in the muscles at the tops of my arms and my legs, it seems to target the different muscle groups. But it's the overall 'feeling really ill' like having the worst flu ever invented that is getting to me, I can't even have a hot drink because I break into a sweat and my head feels as though it's on fire if I do. The lumps on my head went down with the higher doses of steroids, but I still have tender areas at the back of my head and one lump that comes up again if I drop the steroids below 5mg. Could anyone shed any light on what could be causing all this please.
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