I’m still in a fibromyalgia flare at the moment and some days can’t function at all. Some days I feel improved and am desperate to get out and about only to feel very unwell again the next day. Fluctuation is the theme here. I’m hoping this flare will pass soon.
I found a link to NHS Blog Doctor-Dr Crippen who has written on his blog and in the Guardian that he thinks Fibromyalgia does not exist
“Oh! Dear. I just happened to mention in the Guardian today that I do not know what “fibromyalgia” is. They did not teach me about it at medical school. It is not a diagnosis I have ever made and, not knowing what the condition is, I shall not be making it in the future. Truth is, I rather doubt it exists at all.” Dr Crippen
http://nhsblogdoc.blogspot.com/2010/03/fibromyalgia-whatever-that-is.html
I am incandescent with rage, how can a Doctor just make arbitary decisions like that, about something he admits himself he was not taught about (many years ago may I add) and hint that many Doctors have the same attitude as he does, and then get his ill-informed opinion published in a national newspaper. I think the reason I’m so angry is that I’m in so much pain and my life is so limited and then some idiotic Dr says it doesn’t exist. If I had any choice in the matter I would be living a normal happy life, going for long walks, working and enjoying my hobbies. I can’t do this because I’m not able to and for some Dr to say it doesn’t exist then what is it then genius? Is it your years of scientific research that have led you to this conclusion? No you looked up the font of all rumour and speculation, wikipedia. I’m trying really hard not to swear, I think I’ve done well so far……
Yesterday I went to the pain clinic. I was referred to get acupunture which is good because it has helped in the past. I was also advised that Lyrica might help but I’m not particularly keen to go on any more drugs, I’m already on three and they don’t really know how they all interact let alone four. Plus I’ve had terrible weight gain from the ones I’m on and don’t want to add to it. The doctor didn’t really give me much of an idea as to what else they’re going to try if anything, and it was a bit confusing. It’s also becoming clear that not very much is known about Fibromyalgia and Chronic Fatigue Syndrome. So I suppose I shouldn’t expect too much in the way of help.
I’ve had the cold for a good few days now, it’s making the fibromyalgia much worse. I’m aching more than usual and my temperature is all over the shop. When I used to get the cold before I had fibro, it was an incovenience but now it floors me.
I’m working on trying to stop pushing myself too much when I’m feeling good, because if I do I then crash and my Fibromyalgia symptoms flare up and then my mood dips too. I’m learning (slowly) that pacing is definitely the way forward. The problem I have is that when I start to feel better I want to get on with all the stuff I haven’t been able to do and I get over-exited, do too much and end up sore and exhausted. I need to realise that when I’m feeling good/better I need to save some of that energy and then I can more consistently do the things I would like to do.
I’ve been doing some craft recently, needle felting, wire sculpture, sewing and mixed media sculpture. It’s really good fun. Unfortunately my fibromyalgia does not agree. My neck keeps seizing and my hands are in pain. Aaaargghhh. So I’ve taken the approach of little and often. It’s working out ok, a bit frustrating but ok.
I’ve been having a lot of fibromyalgia pain recently and it’s wearing me down. It’s impacting on my moods and quality of life. I’m getting frustrated and depressed because I’m so sore and stiff. Also I’m unable to do all the things I used to do and would like to do. I used to be a very active person, but now I’m struggling to walk short distances due to the pain and tightness in my legs. My hobbies of painting and playing the bass are restricted and gardening is out of the question at the moment. I am managing to paint at the moment but it is making me so sore. I would also love to do more than I can, I suppose I should just be grateful that I can do it at all but it’s not as easy as it sounds. I’m having larger and longer periods of the day when I don’t actually have anything to do because I’m in too much pain to paint or play my bass. I’m not good at being bored and un-occupied (who is?), and I’ve been racking my brain for gentle things to do when I’m unable to do much more than sit uncomfortably in a chair, but so far (after 9 or so years) I can only think of TV, which is pretty boring and not really an activity (if there’s even anything on). I sometimes read but only when I can concentrate. I would love to have a job but I can barely function as it is at the moment.
Moan over…
4.30am this morning and I had to get up, I was in to much pain to stay in bed. it’s 6.10am now and I would really like to go back to bed because I’m exhausted. Luckily I don’t have much on today but that’s not the point. I’ve been having really vivid dreams when I am sleeping and keep waking up in between each dream, it’s exhausting. When I wake up I feel like I’ve been beaten up in a fight, my muscles ache and I’m really stiff and sore. This Fibromyalgia business is really beginning to pi** me off. It’s very changeable and wears you down. I’ve been getting very frustrated with it recently, which I actually see as a good sign because it’s better than losing hope.
Now in the midst of a fibro-flare I’ve become depressed and really bored. I’m so sore and fatigued that there is very little I can actually do to entertain myself. My mind is trapped in a body that won’t co-operate. Even messing about on the computer, which is what I normally do when I’m too tired and sore, is something I can only do for short periods because it’s painful and I can’t concentrate. I’m not feeling good at all.
I’m struggling with finding stuff to do. I’m having a fibromyalgia flare up at the moment which means I’m too sore and tired to do much. It’s deeply frustrating and rather tedious. My mind is awake but my body is not able.