After ages of trying to convince the GP there is something wrong, a couple of months waiting for a triage appointment and then months of waiting to see the specialist, I finally had my hospital appointment on Tuesday.
I was anxious as hell. Didn’t sleep well the night before. I was a bundle of nerves. I was wondering what they would say. Would they give me the diagnosis I was expecting and dreading? Would they say oh there’s this test we haven’t done yet, followed by more waiting? Would they say “pull yourself together woman, there’s nothing wrong!”? (Ok I never thought they would say it like that but you know what I mean!) or would it be another red herring like the triage appointment, where I thought it was with the specialist and it turned out to be triage?
I went to the appointment and the doctor was actually very nice. He asked me a whole load of questions, I answered them. Some of them I had answered before at the triage appointment, some were new. Anyway, he listened and wrote down notes. Then he did a physical examination including some prodding which actually really hurt! And then he started talking about treatments, he said they have a CBT group for people with fibromyalgia. I stopped him there and said “so is that what you think it is?” Because he hadn’t said so at that point.
He said yes, that’s what the diagnosis is. We can call it chronic fatigue syndrome or we can call it fibromyalgia but the treatments are the same for both and he is not too bothered about the diagnosis, more about the individual and the treatment. That was kind of nice to hear and it stopped me from overthinking the diagnosis at the time… I have fibromyalgia.
So the next thing is to see the CBT therapist that specialises in chronic pain/fatigue conditions and see the physio for an exercise plan. He did not think a half marathon was a good idea, damn – I’m meant to be doing one in spring!
In one way it was a relief. I have suspected for some time that I might have fibromyalgia but now I have a diagnosis. I am sad that he couldn’t say “oo actually you’re deficient in vitamin X, take this and all your symptoms will go away”, but that was never going to happen. Now I know that there’s a name for what I am experiencing and it is a real condition, this is not just me, and it’s not just in my head. That validates me a little.
And there’s the other side.. being diagnosed with a condition that I know there is currently no cure for. A chronic health condition which may or may not get worse over time. I need to be careful not to use it as an excuse not to do things, and also be aware of my limits… a fine balance.
Anyway I am off to sleep now. I’m sure I’ll write on this topic again pretty soon, but wanted to write an update and get it all out of my head.