Early last week, following my diagnosis of fibromyalgia by the rheumatologist, I visited my GP. I broached my concerns regarding the diagnosis of Fibromyalgia, talking to him about what we had been through this year with my son. I talked about the initial diagnosis of Ehlers-Danlos syndrome by the paediatric consultant, the concerns that it was a collagen problem raised by the haematologist and the diagnosis then being rescinded by an EDS Doctor. My obvious concerns being that Fibro pain and exhaustion are very similar to EDS problems and I felt it a little strange that EDS was considered by two consultants in relation to my son and I’m diagnosed with fibro.
For the first time since my son and I’s health became an issue, I actually felt listened to and heard. Instead of making notes, appearing to have a diagnosis at the ready and not listening to what I was saying, he listened and acknowledged that it did seem strange. He said that he would write to the rheumatologist asking if EDS could account for my problems, especially as he had stated that I am hypermobile. He also agreed to refer me to a specialist in London if the rheumatologist doesn’t want to reconsider his diagnosis. The London consultant specialises in fibro and EDS so he should know one way or another which it is.
The reason I want this sorting out for both of us one way or another is that fibromyalgia though pretty debilitating at times, it is not progressive. EDS on the other hand brings with it various health issues that need monitoring. If it is in fact EDS, I want my son to be cared for properly.
I know I seem to update my blog about these things weeks after they’ve occurred, but it takes me that long before I can get my head around the words.