You are right Kirsty, I am pretty much pinning it on the gene result. I wish I could see some other 'proof' but I do not know if there is any.
I am fairly sure I have no fusion but I am certain this is AS or another spondy simply because when I treat it as such I get improvement, when I treat this as Fibro, I do not
Also, although folk with fibro often get IBS, they do not have this flare thing following eating starch. flares in Fibro are normally triggered by chemicals, stress, weather change and so on. And Fibro flares can occur anywhere they do not constantly start with the sacroiliac. Although I do know not all AS folk have flares exactly like I do
But what i am saying is this. Here in England Fibromyalgia is typically treated as a psychological condition, often with the assumption that we are attention seeking. the general belief is that we cause the flares ourself being too sensitive and basically there is a lot of contempt towards folk that have Fibro.
This stops me asking for help, because I know my condition is not psychological, I know it is physical and I know that it follows the description Dr Ebringer gives when he says the starch enters the bowel where the bacteria feed off it and this can lead to flares etc
Bt if the gene test comes back I am backto my 3 year old x-ray. It shows damage but I am wondering what the Rhumatologist is going to make of this. I know the Rhumatology Nurse Consultant that I say could not even be bothered looking at this x-ray, nor giving me an x-ray, she said by looking at my face she could tell i had Fibro and that i did not need any tests
This is not the first time I have been treated like this. It has happened many times before. It makes me feel proper insecure.
One thing that has changed though is me finding this site. I do not feellike I am on my own now. I gain more and more self belief every day. I have never doubted that this is physical but I did doubt my ability to see this through. The stress really gets me down. This part of me is probably part of the Fibro, which I may have I do have chemical sensitivity, and severe fatigue, and i get anxiety etc so I may well have Fibro too, but primarily it is this stuff with my bowel and sacroiliac, plus the flares that I have to be taking care off. It this lot is OK the Fibro things are OK
Anyway, fingers crossed, if the gene test is negative I do hope I can find a rhumatologist that will listen anyway, we will see
Lots of love to you Kirsty
Love Joanne
