"My experience of Fibromyalgia"
About: St Richard's Hospital / Rheumatology St Richard's Hospital Rheumatology PO19 6SE
Posted by sidarta (as ),
I was lucky enough to have good GP surgery and had a fairly quick diagnosis. However for me that was the easy part! Since my diagnosis I have just come across a brick wall at every turn. The same reply when I visit the doctors is a shrug of the shoulders and we don't really know what to do. I do not blame my doctors for this, in fact as I have said they are very good. The problem is the medical professions approach to Fibromyalgia.
For a condition that effects so many people (1 in 25), and in many cases quite severely, the level of research is criminal. The answer that we do not know the cause or best treatment is not good enough and the fact that sometimes you get the feeling that some medical professionals believe it is psychological is a disgrace.
I can tell you that for me it is debilitating and at just 36. I am worrying about my future and work. I am someone who has always been fit, running 5 miles a day, playing football and national league basketball. The fatigue I feel is just crushing and literally stops me in my tracks. The pain is literally head to toe and very disabling, to the point I am debating getting a walking stick!
For me, the one thing that will improve the life of those with this condition is more research and then some more research and then some more and not stop until we get some proper answers. I know research is expensive but surely for a condition that has such a debilitating effect on so many it is not only needed but also worth it and I for one would be happy to be a volunteer to be used in such research. Use me, prod me, do what is ever needed but lets just find a cause and then a proper care package that helps. but first we need the funding, so please anyone in a position to allow such research please think of the stats 1 in 25 and make the right decision.
many thanks for your time.