Cheers guys.
>> Karen), is pretty much in pain the whole time now as well
Sorry to hear that and send my best wishes. Since I last chatted with her (must be more than 2yrs), its been decided that FM was likely a misdiagnosis. I was temp discharged from pain clinic 2yrs ago as both the physio and their doctor said they couldnt work with me as they suspected something else going on. Despite me working with them it was obvious I was getting worse and the physio in particular was concerned that he could be doing damage. Some of the symptoms I have now are not typical of FM, but it is difficult because so many FM symptoms are typical crossovers with other illnesses and diseases.
The situation with Covid has done me absolutely no favours as many depts have ground practically to a standstill, its frustrating. I need another MRI and spinal tap, but consultant phoned last week to say even though I was on his priority list he had no idea when the tests would be done due to the hospital being critical. Apparently this areal no longer does some of the tests and doesnt even deal with certain neuro diseases and I have to elsewhere which is a PITA as by the time I messed with transport it practically takes up the whole day. There's even been a couple of times when I was beginning to think I'd be stuck there all night and they ended up sending me home in a cab. - Prob cheaper than a 2 man crew from Manchester in an Ambulance which happened before now. MS has been mentioned several times by other consultants locally, but they cant officially diagnose me and has to be neuro elsewhere. Very tired of how slow the cogs are turning especially when it is now evident that I am not at all a well bunny. The neurologist face was a picture when he physically saw me face-2-face for an appt rather than telephone consulations and theres been some back peddling - glad that I had a support worker there with me to witness it. I'm not exaggerating how frail I am and how I struggle to keep myself from having to go in. I need an op to remove a (suspected benign) tumour, but after careful consideration and weighing up the risks, its been agreed that I am not well enough to undergo surgery. The tumour which is about the size of a small chickens egg/golf ball is as is not related to the neuro stuff and has been officially designated as the least of my worries. Not wanting or looking for sympathy as Ive come to terms with "it is what it is" and I dont see things changing much with the covid situation. Plenty of things I could say about that but too tired and weary I'm great at starting posts but far too often I tire before done. Its a miracle this one got through.