This morning I’ve been to my GP to discuss what was said at my pain clinic appointment as well as getting more blood tests to see if my iron levels are up enough after 2 courses of tablets. I also wanted to discuss what my rheumatologist wrote on the last letter I received, “probable fibromyalgia”. When I received the letter I didn’t read it properly and didn’t see this note until I was at the pain clinic appointment going to the wrong place as I hadn’t read that letter properly either! (You’ve got to love brain fog)
I know a few people with fibromyalgia and know a bit about it, but not a lot and I had no idea how they diagnose it and when I got to the pain clinic I was focusing on that appointment and didn’t have time to think properly about this new condition being attributed to me.
The appointment went well, the consultant that I saw was lovely, she grasped that my pain was real, severe and very challenging to deal with. I explained that I’ve had ME since I was a teenager and my PBC was discovered when my doctor was investigating pains in my fingers and wrists which we thought could be rheumatoid arthritis due to family history. So for the past 9 years I’ve been in pain. I was able to manage it by taking normal painkillers and just ignoring it, but over the past 3 years it’s been getting dramatically worse so my painkillers have increased, my fatigue clinic has been helping with physio and psychological support and advice which I’ve been following and it has helped, but I’ve reached another plateau where I’m more disabled and restricted through chronic pain and chronic fatigue so I was willing to try anything she suggested. She explained that the clinic works in a similar was to my fatigue clinic and they look at the 3 P’s – pharmaceutical, physical and psychological so I’d be getting support in all areas. We discussed my medication and decided to give progabalin a try instead of the gabapentin to see if my body fancied a change and this helped a bit more, other than that she was happy with my meds and the levels I’m on (I have a fab GP 😍). For the physical side I’m on a waiting list for acupuncture which I’ve tried before and it was helping, but I can’t afford it at the moment, so I’m going to have to wait for a bit for that. I’m also going to speak to the physio team and see what else they can suggest for me to be doing to help myself. I have to admit that I haven’t been doing my Pilates exercises from my other physio recently so I really need to get back into that routine 😬. As I’m still seeing my psychologist at my fatigue clinic and working on acceptance of my condition and new limitations we discussed focusing on more mindfulness and relaxation (I’ve started doing some meditations again the last 2 weeks so hoping that this helps keep me calm). So everything sounds good! She did a quick physical exam poking down my spine to see where the pain was and we discussed fibromyalgia. I asked if she thought I had it and how it’s diagnosed, she explained that there’s a series of criteria to diagnose it and that she felt I fitted most of them so she’d be confident with that diagnosis.
I went home and did a bit of online research and the only thing that I don’t have in regards to a fibro diagnosis is IBS and stomach problems. My only problems in that area are from taking loads of codeine! I’ve been thinking about it a bit since then and I’m struggling with it. I don’t really want this as another thing that I’ve got. The symptoms are the same as my other conditions and there is no cure for it and the treatment is the same whatever I’ve got, pain meds, exercise and psychological support, so does it really matter? I spoke to my GP today about it and he said it didn’t matter at all for the same reasons, and he pretty much dismissed it. So I’m left feeling as if I do have fibro, I don’t want it, but I have all the symptoms, so am I afraid of the name? The implications? Having another word to describe the same problems that I face and that I will continue to face for the rest of my life? I think if I had something that was curable, or that was treatable to a degree that the symptoms would be controlled then I’d be happy to get another word to describe my health, but having something else that is unpredictable and can’t be separated from my existing conditions makes me feel as if I don’t want or need it at the minute. I might change my mind in the future, but for now I’ll continue to explain my health to people like this: I’ve got ME and PBC, which is an autoimmune disease that no-one has ever heard of, it affects the liver and bile ducts so my liver thinks it’s failing when it’s not. I get chronic pain and chronic fatigue so I struggle to walk and do everyday things. Apart from that I’m fine ☺️