FLF #3: Fibromyalgia - the medical profession's F word

While the majority of Australians were watching the terrible Sydney siege unfold I was at my rheumatologists. I'd gone to work in the morning and then traveled to St Vincent's to see my doctor. Since my last visit in June I'd had major surgery, my fibromyalgia and lupus had gotten worse, I'd gained over 30kg and I commenced the pain management clinic at St Vincent's, as well as Chinese herbal medicine. I explained this all to her and questioned why I was still experiencing major pain while I was taking morphine. I didn't think it was possible. She examined me and asked a myriad of questions and then told me there were two types of fibromyalgia sufferers: The ones that responded to medication and the ones like me who do not. She then proceeded to tell me that I was an extreme case, that medication could not work on me so it was time to start weaning myself off of all the drugs. When I asked her what was I to do next, she told me that she could no longer help me, that I should stick with the pain management clinic, that it was my only hope and that she felt there was no point in me seeing her anymore. This coming from what I was told was one of the main specialists of  autoimmune diseases in the city.

I told her that I'd been researching the condition extensively and that I felt that the drugs I'd been on for so long where known to be ineffective if taken for more than three months so why wasn't I taken off them earlier? Her response was that at least now they know that I 'definitely' have fibromyalgia.

I was a bit lost when I left the clinic. It took me ages just to find a cab to get back to my car; the wind was blowing so hard my eyes were stinging for the dirt blown in them, but it was a blur in more ways than one and I finally got back to my car, albeit limping as usual. 

I drove from Melbourne to Kyneton to go to the dentist. When this doctor gave me an examination she asked me if I knew about the spots on my tongue. I asked if she meant the faint blotches? When she said yes I told her that I thought everybody had that kind of blotchiness on their tongue. It was hardly noticeable. She said not if you know what you're looking for and then asked me what kind of autoimmune disease I had. I told her lupus and fibromyalgia and she told me 'that's not a good thing for you, I'm sorry to say, you need two of your wisdom teeth taken out and with those illnesses is not going to be easy.' She then showed me pictures of people who have had their teeth taken out with these illnesses and they were swollen beyond belief. She explained it was very painful, that she just had a case of it three weeks prior and that the autoimmune disease starts attacking the gums from where the teeth were removed. She also told me it can get quite dangerous if the swelling is blocking the airway.

All I could think was - typical.

So on top of my normal everyday pain and exhaustion I now have to deal with the fact that I have no specialist doctor, I'll have no meds, I have no treatments other than Chinese medicine,  I'm not seeing the pain management clinic until 'sometime in 2015' because the clinic couldn't get the doctors to do the assessment all at once, and I can't even get my fucking teeth fixed.

It was a bad day. So was the next, but it'll be better soon.