Hello, I decided to come on here for information, as I have heard so many good things about it. I have Hughes Syndrome, Systemic Lupus, Sjogrens, Psoriatic Arthopathy and Hypothyroidisim... I don't really feel I can afford the time to develop any more conditions... however I do wonder sometimes if I have it. I throb from head to foot, and itch 24 hours a day and have terrible fatigue. However I have developed print on the end of my nose from the amount of books and medical papers read over the last twenty years. I am sure there is a connection between Chronic Fatigue Syndrome, ME, this fibro thing..... AND the diabolical diagnosis around for Thyroid issues and poor testing in the UK.
So in between trying not to lose my temper with all my conditions, do my exercises, look after children and attend endless medical appointments for myself and children. I try and break through any residual apathy, for myself and others by promoting the three most valid petitions I know which could perhaps bring about real change... should people wish to sign them and pass them on to friends and family via email lists and facebook for further publicity and signatures.
Number one is. The World Thyroid Register... to bring about world wide change for all those people with no choice of medication AND all those of us NOT diagnosed with thyroid issues, due to the testing criteria being wrong
The next one is a UK one to make our government get off it's backside and listen to patients:
and finally. I have had some great care off the NHS and also some vile treatment, due to that chronic complainer label we get when autoimmune disease are not straight away obvious. A very good paper has been written by a group of doctors. Dr Rita Pal, the original Staffs Whistleblower who stood up for the public over the awful treatment of the public.... however she lost her career over this.
The DOH is very slack and lazy and dismissive about reading this paper, which is why it needs signatures fast. A fairer way for patients and a fairer way for staff - resolved issues with dignity, care and less loss of money for both sides, in other words a grown up way forward.
I know Fibro is a condition in it's own right, I am suspicious that I may have it myself... however I wonder how many of us could improve our lot with a little sensible thryoid investigation alongside everything else.
and a nice nostalgic petition signing ditty!
Nice to meet you all.
Mary F x