Now that the 'story' is more or less up to date, I've decided to switch to a blog format as it's a bit easier to keep up with. I'm not good sitting at the computer at the moment, so if I try the other way it's going to get away from me again.
I'm facing some pretty horrid times again at the moment. In January I had suspected bacterial meningitis.
In August last year, I found out the hard way a few months ago that I have osteoporosis. When I say the hard way, I mean I fractured my spine. In about eight places. Funnily enough, the most painful part isn't the broken bones. It's all the nerve pain that results. I have burning pain through my ribs and chest. This all came about largely due to orthostatic hypotension - a condition that means my blood pressure drops when I move too quickly from lying or sitting to standing, such as getting up on crutches or transferring from my bed to my wheelchair.
Around this time I also injured my lumbar spine, but it's so far proven something of a mystery. CT scans have shown minor disc bulges at L3/L4, L4/L5 and L5/S1, but they showed no sign of stenosis. No cord compression, no impingement of nerve roots. As well as the CRPS pain in my legs, I have pain that starts in my lower back and snakes down through my hips, groin, knees, calves and ankles. I've never felt pain like this in my life. I used to rate my CRPS pain at a 7-8/10. If I stuck with that scale, my current pain would now be about a 20.
I am scared for my mobility. My dystonia has worsened an I'm now in a cast on my right leg/foot, but oh gosh it's painful. I have a lot of swelling in my right arm and in both legs and I also have weakness in my legs from whatever is happening in my back. This is making it hard to move.
I also started developing fevers some months ago, along with awful fatigue, joint pains - another 'mystery'. Almost every evening I spike a fever, I get so tired I can't function - and nobody can tell me what's going on.
I'm facing some pretty horrid times again at the moment. In January I had suspected bacterial meningitis.
In August last year, I found out the hard way a few months ago that I have osteoporosis. When I say the hard way, I mean I fractured my spine. In about eight places. Funnily enough, the most painful part isn't the broken bones. It's all the nerve pain that results. I have burning pain through my ribs and chest. This all came about largely due to orthostatic hypotension - a condition that means my blood pressure drops when I move too quickly from lying or sitting to standing, such as getting up on crutches or transferring from my bed to my wheelchair.
Around this time I also injured my lumbar spine, but it's so far proven something of a mystery. CT scans have shown minor disc bulges at L3/L4, L4/L5 and L5/S1, but they showed no sign of stenosis. No cord compression, no impingement of nerve roots. As well as the CRPS pain in my legs, I have pain that starts in my lower back and snakes down through my hips, groin, knees, calves and ankles. I've never felt pain like this in my life. I used to rate my CRPS pain at a 7-8/10. If I stuck with that scale, my current pain would now be about a 20.
I am scared for my mobility. My dystonia has worsened an I'm now in a cast on my right leg/foot, but oh gosh it's painful. I have a lot of swelling in my right arm and in both legs and I also have weakness in my legs from whatever is happening in my back. This is making it hard to move.
I also started developing fevers some months ago, along with awful fatigue, joint pains - another 'mystery'. Almost every evening I spike a fever, I get so tired I can't function - and nobody can tell me what's going on.