My Fibromyalgia Odyssey; The Black Hole Between Diagnosis and Treatment


 my fibromyalgia odyssey
Image from Hideyuki Katsumata exhibiton, DCA, 2015


My non-New Year’s New Year resolution was to be upfront about the chronic illness I live with. It feels important to show it and talk about it, especially just now when I am experiencing a very odd break in treatment which I want to document somehow. This is the first of an ongoing periodic journal on this topic, and as chatty update-type stuff is very new to me I hope you’ll stick with me while I find my groove



My fibromyalgia diagnosis was somehow both a long hard slog to get and then a complete surprise when it came. I have had issues with chronic fatigue and pain since I was in my late teens, but it has always been explained away as things such as ‘growing pains’ followed by a series of misdiagnoses including IBS, endometriosis and arthritis.


When my new GP here in Dundee finally started to make noises about the possibility of me having fibromyalgia, she explained that I would experience pain every day at varying levels for the rest of my life. She also came at me with chronic fatigue, and told me that this would also be a huge feature for the years to come.


And that was that.


I am unlucky in that no proper advice is being offered to me by my GP. Whenever I go back after trying a new bout of pills (which so far have been useless or given me gross side effects… or both) my GP literally grabs this big-ass book from the windowsill, prescribes me the next bunch of pills off the list, and sends me on my way.


I’m too tired to argue.


My one glimmer of hope in this stale process, a physio that the GP arranged for me to see, told me to get a bike and tried to sign me up to an exercise class for the elderly.


I was too tired to argue.


I didn’t go back.


So I’m here without medical support or advice at the moment, I am too tired to fight my corner. My partner is in the process of tracking down a specialist in Edinburgh that we can be referred to.


In the meantime, the things I haven’t been told about fibro and CFS feel endless. Yes, I do feel a bit resentful that I’m learning and identifying my symptoms through other ‘spoonies’ on forums, blogs, Twitter and Facebook. But through this conversation I think I’m starting to *realise some things* about fibromyalgia; it is so varied and weird and strange and unpredictable and hard to treat because it seems to be more than one unknown condition all rolled up and lumped in together


…which is something I am itching to speak to a specialist about, because of course, how can you hope to treat something if you don’t know what it is? So as I sit here writing this at 5am after another sleepless night, I hope that next time I update you on this ridiculous odyssey (I’m still not sure about that word, but ‘journey’ felt terribly wanky I couldn’t bring myself to call it that) I can at least report that I have the name of a specialist, if not an appointment #goals


Until next time.


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