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I've been trying for over four years to get my GP and various consultants to come up with an answer for my pain/fatigue/etc syndrome. Various GP's at my group surgery have dismissed it being due to fibro (some not even believing FMS actually exists!). Been referred to a neurologist, rheumatologist and ortho surgeon. Various MRI's, ultrasound etc. determined I have OA in my neck, plus ruptured tendons in shoulder/bicep (rotator cuff rupture). Neurologist ordered MRI which showed the mild OA in neck. Rheumy said not fibro but could be excess iron in blood, ferritin blood test ruled that out. She referred me for ultrasound which showed ruptured tendons. Referral to ortho surgeon who said ruptured tendons wouldnt necessarily be causing pain but could be OA in neck causing pinched nerves etc. Referred to physio. Finally got to see physio today and he sat and talked to me for ages - no actual therapy but the chance to discuss all the issues. He was adamant that the MRI of the neck showed no pinching or explanation for the upper arm pain and that the rotator cuff rupture wouldnt be causing the widespread pain issues I have. He had good knowledge of fibro and is experienced at dealing with patients with it so questioned me about fatigure, intolerance to bright light, loud noise, etc., stomach upsets/IBS, and asked about the chronic fatigue I experience. At the end of a long discussion he said he was absolutely convinced I have fibro even though my GP's deny its existence and the rheumy said the pressure point test meant I didnt. He also said there is a test that can be done to identify it, NOT a blood test but a test of spinal fluid which shows the dopamine levels which will be much lower in FMR patients than others and is now the 'go to' way of diagnosing rather than the pressure point test which is unreliable at best. Whilst he said obviously he isnt a doctor and does not therefore have the authority to issue a diagnosis, his recognition and explanations were like someone turning on a light! I actually started to cry while we were talking, just the emotional relief that somebody understood and finally acknowledged that I wasn't making it all up and that single 'mechanical' issues like mild OA in the neck werent responsible for the whole range of symptoms I've been struggling with. There's hope out there for anyone with this god awful syndrome. If you are having trouble getting a diagnosis, push your doctor into discussing the tests my PT mentioned - which he says can now definitely rule it in or out better than vague pressure point exams. I'm still in pain, still exhausted but so much happier than I was before
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