It's been a while since I've posted, and it's been an interesting few months. Since coming back from Mayo, we decided to reduce the dosage, so I've been on 33g (just one day) every 3.5 weeks. The other thing we tried was to switch to Octagam instead of Intragram P (an Australian product) in an attempt to test whether this would make any difference to side effects.
The usual side effects still seem to be happening - headaches and fluey feeling. Last treatment - about 10 days ago, there was nausea as well, so it wasn't very pleasant! While the strength tests I use seem to indicate the usual small spike after receiving treatment, something else has been happening over the last few weeks.
My right hand has become somewhat inflamed - the middle finger in particular. There is a noticeable weakness and fatigue in the hand when I use it, so much so that it gets quite sore by the end of a work day. After going for a power walk, my entire right hand feels very bloated. I have switched mouse hands to my left in an attempt to use the right hand less - that has been a huge challenge! My general practitioner sent me for some blood tests, and I see my neuro next week, so it will good to get some professional feedback and hopefully some answers.
Showing posts with label chronic pain. Show all posts
Showing posts with label chronic pain. Show all posts
Friday, February 26, 2010
Tuesday, February 24, 2009
on pain and memory
Chronic pain, and muscle soreness or weakness, is a funny thing. When it's there, you know it. You notice it all the time. Whether it can be medicated or not, it's there in the front of your mind. The fact that it's chronic bears down on the mind as well, and compounds the effect. Unlike a sports injury or the occassional headache, knowing that this is something long term with no end in sight magnifies the feeling with an additional, psychological burden.
Then, if a course of treatment is successful, the symptom may just fade. And when it fades, it's almost as if it was never there. When it's absent, it was really hard to remember what the pain or weakness was like when you had it. You quickly rebound to a state of how things ought to be as if that is how it always was, and there was never anything wrong.
But after a while, the effect of the treatment may start to wear off. The weakness or pain emerges from its dormancy quite quickly, in fact much faster than its original appearance, which was a slow progression over perhaps several years. It announces to the body: "I'm baaa-aack", like a long lost friend who was never lost at all; just travelling briefly. And then you realize that the weakness and pain was never gone at all, and that the time you enjoyed when it was absent was the exception, rather than the norm - just a short dream.
This is where I am at now. After nearly two weeks on the course of Prednisone (which is now finished), and nearly two months since my initial IVIG treatment, the hand weakness reappeared almost overnight and pain a few days later. There is also some feeling of weakness in my left hand, which I've been trying to find words to describe, and of course the cramps in my calves (although I think lots of stretching helps for that).
But now, I am in no-man's land. I'm not going to have another "juicing" with IVIG because we're not sure how to deal with the side effects. But if I do nothing, then the hand weakness will just stay and get worse. Am waiting on some more test results. These might shed some light on the whole MMN vs CIDP thing, which might change the preferred treatment. The only certainty for me is what happens if I do nothing.
Then, if a course of treatment is successful, the symptom may just fade. And when it fades, it's almost as if it was never there. When it's absent, it was really hard to remember what the pain or weakness was like when you had it. You quickly rebound to a state of how things ought to be as if that is how it always was, and there was never anything wrong.
But after a while, the effect of the treatment may start to wear off. The weakness or pain emerges from its dormancy quite quickly, in fact much faster than its original appearance, which was a slow progression over perhaps several years. It announces to the body: "I'm baaa-aack", like a long lost friend who was never lost at all; just travelling briefly. And then you realize that the weakness and pain was never gone at all, and that the time you enjoyed when it was absent was the exception, rather than the norm - just a short dream.
This is where I am at now. After nearly two weeks on the course of Prednisone (which is now finished), and nearly two months since my initial IVIG treatment, the hand weakness reappeared almost overnight and pain a few days later. There is also some feeling of weakness in my left hand, which I've been trying to find words to describe, and of course the cramps in my calves (although I think lots of stretching helps for that).
But now, I am in no-man's land. I'm not going to have another "juicing" with IVIG because we're not sure how to deal with the side effects. But if I do nothing, then the hand weakness will just stay and get worse. Am waiting on some more test results. These might shed some light on the whole MMN vs CIDP thing, which might change the preferred treatment. The only certainty for me is what happens if I do nothing.
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