So after a couple of months of being out of the loop, I think I'm back.... A couple of doctor's appointments later and things seem to be getting abit more on track. I have managed to get onto Lyrica for my flare ups and on Prexige for my hip pain and yesterday my specialist agreed to refer me to a sleep clinic... go me!
For all you out there I found a great website - check it out: http://www.butyoudontlooksick.com/ and also take a look at the Spoon Theory... very helpful in trying to explain what it is like to be ill even if you don't look it.
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
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