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Had surgery for herniated disc. Fatigue, muscle and joint pains. High ESR levels. Family history of lupus. Spinal infection?

Hi, I injured my back in Feb 09 (very large central herniation L4/L5 with sequestrated disc) which I then went on to have surgery for in Sept 09. From the very day I hurt my back I ve had problems with bad fatigue , muscle aches and pains and also joint pains which have gradually gotten worse with each flare. Three months after my back surgery I felt really unwell with all the above problems plus worsening of back pain. Had blood tests done and my ESR came back at 104. Had more MRI s done as they thought I had an infection in my spine but to this day there is still no answer. After having these problems on and off for over a year my Rheumatologist admitted me to hospital for test after test due to a history of TB in my lymph nodes and a family history of Lupus . After a week gave they me the diagnosis of Fibromyalgia on April 2011. Hurting my back is what triggered off the Fibromaylgia badly but when I look back now I ve had some of these symptoms since I was 12 years old, now I ve just turned 29 on Tuesday just gone. My current problem is that when I do have a fibro flare (which I don t tend to get a break between) I have bad joint pains and my ESR always goes up. I can usually guess what my ESR will usually be to the exact number before my dr gives me the results and my CRP also goes up as well. I ve been trying for last couple of years for my Rheumatologist to listen to me and tell him that when I do have a flare my ESR goes up and get the bad joint pains and I know that Fibromyalgia isn t an inflammatory condition. The last 3 times my Rheumy has seen me he s just brushed me off and said that its just normal for me. So now have stopped seeing him and waiting for a second opinion but have to wait til end of May and having a family history of Lupus, I like to definitely have that ruled out. When I do flare my ESR goes up, CRP but not all the time, I become anaemic, sometimes my white cell count goes up with no reason, bad joint pain (especially the knees, wrists, fingers and sometimes the toes) my hair falls out in handfuls, become extremely sensitive to sunlight which usually ends up in a migraine, swollen glands in throat, armpits and groin and mouth ulcers which I don t all the time and I m starting to notice a lot of dizziness. Then there is all the common Fibro symptoms on top of that aswell so not sure if its just that causing them or if it s something else. The reason why I want the lupus ruled out is because I have a brother (whom I have nothing to do with) who gets a raised scaly red rash across his nose and cheek area when he becomes run down and then also have 2 other family members that have Ulcerative colitis which are all on my dad s side of the family including the Lupus. My ESR has been up to 104 at its highest but usually sits around high 50 s to mid 60 s. When I was diagnosed with Fibro, it was at it s lowest it has ever been which was 33. In my last blood test a just over a month ago my ESR was up to 78 and CRP of 15. I had tested weakly positive to Barmah Forest Virus from mosquitos and dr had thought that had been the cause of the pain and fatigue but a second test a couple of weeks later had ruled it out. So the high ESR is still a mystery!! The only thing that is helping with the pain especially in the joints when the ESR does go up is steroids. I m due to have another blood test next week but have a feeling that it will be high again as I ve had quite a busy and stressful week and going through a flare at the moment. Have been tested over and over again and all tests for Lupus and other autoimmune disorders come back negative. I know that Fibromyalgia doesn t cause my high ESR problems and my Rheumatologist did think I had PMR at one stage but wasn t diagnosed with it. Any help or thoughts would be greatly appreciated!
Asked On : Mon, 1 Apr 2013
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Answered: Tue, 25 Jun 2013
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