This fibromyalgia thing is doing my head in.
Every day I am trying to gain more knowledge about this illness that has hit me like a 10 tonne truck. It doesn’t help that I am in pain, I am more exhausted than I thought possible, and sometimes my brain just seems to turn to mush… without warning. I’m wondering why I get out of bed in the morning, especially when the mere act of getting out is both a war on the fatigue but also a revelation of what is going to be painful today. I know enough that anyone with fibro struggles with this every morning but I also know that if I don’t get myself out of bed I am quickly going to slide into a deep hole of depression. And I don’t just mean a bad day where I feel sorry for myself. I mean the chronic depressive disorder I have faced so many times before.
I think what is hardest right now is knowing who to listen to, who to believe and how to work out what is right for me. Since my diagnosis a few weeks back I have been repeatedly told by health professionals that physical exercise will help. Interestingly that’s about the only thing they have been able to tell me, apart from telling me that I can’t have any effective medication for it and that I should simply accept a life of codeine addiction.
What is confusing is that when I talk to anyone who has fibro I am told exercise causes pain. And now I have worked that one out for myself. A few days ago I went for a walk. At the most I might have walked 1.5 kilometres, on flat land. That’s not far. I haven’t been exercising regularly lately (because of how bad I feel) but not that long ago a five kilometre walk would be nothing. But this time? By the time I was finished I was exhausted. My feet ached, my calves felt like they were exploding and my hips were feeling stiff. Moving took effort. What I have learned is that the next day is the test and I can tell you I was so sore. My feet always ache but now my hips hurt every time I moved and my back was suffering. I think it is only natural that I ask,
what did I do that for?
After two days of exhaustion and pain I am moving again and I headed off this morning to see my newly found physiotherapist who is teaching me the skills of cognitive behavioural pain management.
I think it is important to say at this point that I failed cognitive behavioural therapy (CBT) when I was being treated for depression. Yes failed. To the point where those involved in trying to teach me this gave up. Actually I was discharged from the local adult mental health outpatient service because I had not responded to CBT and the psychiatrist in charge didn’t know what to do with me. Simple, “take her off my books and then I don’t have to worry about her!” It made me feel great! Actually it didn’t and as an aside it didn’t help that the Eating Disorders Service and recently taken a similar approach.
When my rheumatologist recommended I see this physiotherapist I was doubtful. Mention the words cognitive behavioural and I am ready to run a mile… except I can’t now because I’m too much in pain and fatigue. I have now seen him twice but have to admit that at the end today I avoided the issue of another appointment. But that’s because I am confused and I need information, reliable information.
I questioned him on why I would want to exercise when the result is so bad. I understand why in a normal, healthy situation regular exercise is recommended. But why is it recommended by medical professionals for treatment of fibro when all it seems to do is make my symptoms worse?
Apparently if I don’t exercise, my fibro symptoms will get worse. Is this true? I don’t know but it took 30 minutes to get that out of him, there was a fair amount of avoidance to get there. And according to him if I regularly exercise at a level appropriate to where I am at, I can beat fibro.
This was the first time someone had told me that it was possible to beat fibromyalgia. I’m wondering, is this true or was he telling me what would stop me asking difficult questions.
I was referred to a book ‘Explain Pain‘ to help me understand why my head is doing this. Because apparently it is all in my head and that is why I walk but I end up with a sore back rather than sore legs.
The thing is I don’t know who to believe. Those of us who actually experience this illness on a day-to-day basis tell a different story than health professionals. And my experience to date is that health professionals have given me very little information even though I’ve constantly been pushing for it.
I recently said that I didn’t think I needed to understand something in order to believe that it worked. I’ve changed my mind. I don’t get fibromyalgia. It makes no sense. Perhaps that is why I failed CBT when it was applied to my mood. Perhaps now I am failing it again.
I would love to hear your thoughts if you have fibro or have knowledge about it. What do you think? Is it possible to beat fibro? Only this afternoon I read on a site that fibro symptoms don’t decline (if I don’t exercise) and it isn’t possible to recover. So you tell me, what do I believe? I’m confused.
Actually I think I’m having a bad day. This has left me grumpy with everything. All I want is a straight, consistent answer. Is that too much to expect?
Meanwhile have a great day yourself.
- The Fibro Fighter (and another Award) (infinitesadnessorhope.wordpress.com)
- Pain… 24/7 (infinitesadnessorhope.wordpress.com)
- Fibromyalgia sucks! (fibrofella.wordpress.com)
- My Friend Fibro (gingercouturier.wordpress.com)
- Learning Fibro As I Go (findfocus.wordpress.com)
- Introducing FibroFogg in 365 Days (fibrofogg.wordpress.com)