helen-louise (baratron) wrote,

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New-to-me doctors never understand me

Today I experienced the joy which is seeing a doctor who doesn't know me. Apparently my usual GP is on holiday somewhere warm, lucky woman.

So I was explaining to the doctor that I have had chronic fatigue and pain on and off since I was 13 and I'm now 40, and that I was concerned about the pain in my left knee. The last time I was in this kind of pain was March 2003 when I got diagnosed with hyperventilation occulta. It's a chronic fatigue syndrome type of pain rather than an injury sort of pain.

I explained that I was concerned because I am unable to do very much exercise because of my exercise-induced exhaustion, and now because of this pain I can't even do the small amount of exercise that I usually do. It hurts when I sit, it hurts when I lie down, it hurts when I stand, it hurts when I walk, it hurts when I stretch. Nothing that I know of changes the pain. Since some of my other joints are starting to get achey too, I am concerned.

I thought I had explained everything clearly, but then the doctor pointed out to me that my knees would hurt less if I lost weight. I said that in order to lose weight I would need to be able to exercise, and she told me it was a combination of exercise AND diet and suggested that I should look into portion control. I did not have the spoons to explain how the amount of food I eat decreased by about a third when my chronic fatigue got really bad (due to my appetite decreasing), and how it decreased even more when I started throwing up several times a day. I especially didn't have the spoons to explain that I have just been diagnosed with a hiatus hernia and am now eating small meals and stopping before I am full so that I don't throw up. For example, the last couple of times we've gone to Pizza Express, instead of eating a starter and a pizza and a side order like I once did, I've eaten a starter and a side salad - because I literally can't eat any more without making myself feel sick! I don't know how many calories a day I do eat, but I suspect it is not an unreasonable amount.

(I also did not have the spoons to explain how having chronic fatigue affects my ability to maintain a healthy diet, in that if I am in too much pain to get downstairs to the kitchen, I will have to eat whatever fruit, protein bars, biscuits and chocolate are upstairs. I live upstairs because we don't have a downstairs loo and the location of our plumbing is such that there is no easy way to fit one. Therefore it is important for my knee to be capable of going up and down the stairs a few times per day. Other options such as stairlifts and upstairs fridges and microwaves exist, but I would prefer to simply be able to do the small amount of walking myself.)

So she gave me some physiotherapy exercises to do and told me to take paracetamol four times a day. I will attempt the physiotherapy exercises to show willing, since they will provide useful data about whether doing them makes the pain better, worse, or the same. And I'll do my hyperventilation physiotherapy to make sure that overbreathing I can't detect isn't contributing to the pain. (My breathing doesn't seem overly fast, not like times when I've been ill from hyperventilation before, but that's the "occulta" part of it - breathing 20 times per minute instead of 12 is enough to make a person seriously unwell.)

I will not bother to take paracetamol, because I don't see any point in poisoning my liver with a drug which does not touch the pain. One of the things I've learned over the years is how doctors simply cannot understand how chronic fatigue pain is immune to normal painkillers. Which was why I was there - to ask if I should increase my dose of baclofen. I'm on the second-lowest possible dose of it, and there are many more possible doses. But she didn't feel confident talking about that.
Tags: annoyances, better living with modern pharmacology, chronic fatigue, fat, hyperventilation, pain, spoon management

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