The way I made attending camp work was basically trying to work around the fact that my legs almost felt like I was trying to walk on broken bones. I participated in barely any physical stuff. I got driven places like the nearby town as an accommodation instead of having to go on painful long walks with the rest of the camp. I almost developed a stomach ulcer from taking so much Advil to cope with the pain induced by walking around camp everyday.A good friend of mine who was a councilor broke his femur and lent me his spare cane to use as needed which was helpful... until it broke. Like I said, at this point no one, including myself and the camp nurse, took me seriously.
There was nothing to see, I was simply deconditioned but so is half of the kid population these days. I had no visible cast that a person with a broken leg would have so no one really understood what situation was and the immense force of will it took to even go to camp. If only pain was visible it would save me a lot of trouble. I obviously couldn't go on any of the annual camping trips and spent my time constantly taking Advil and Tylenol which for reasons we couldn't understand at the time barely helped. The cane certainly helped a significant amount in managing pain levels.
It was the last few days of grade 8, just before graduation. It was nearing the end of the school year for 8th grade and my flu symptoms were gone, except for that persistent full body pain. Working out is was certainly returning my strength back to normal but it didn't improve my pain even a single iota. Oh well, there was nothing I could do. I toughed it out to go to the last couple days of school where I got barraged with questions mostly concerning things like, "Where the hell have you been for the past 3 weeks?" I explained the swine flu infection I suffered and many went, "Oh my god! me too!" It turned out that usually you only get it for a few days and is doesn't seem that much worse than a cold. The virus just liked my company I suppose, why was my experience so severe? I ended up having a breakdown at school over some science thing not because it actually upset me just from the pain which would supposedly go away momentarily...Except they didn't. With my legs the muscle pains didn't go away, and it's still there.The pain slowly diminished in my arms and so I found myself working out almost entirely with my arms. Go figure. The first diagnosis I received was myositis, inflammation of the muscles. I had high levels of inflammation but the pain persisted even after that disappeared. Grade 8 was finally over and camp was soon approaching. I no longer had any flu so infecting my camp friends wouldn't be an issue. Unfortunately as you might imagine one does quite a bit of walking at camp. When any use of your legs results in your nerves saying, "You have the nerve to stand up? Sit the fuck down!" coping becomes quite difficult Staying at camp in 2009 proved to be a challenge but not a total disaster.
Fibromyalgia is essentially diagnosed by the doctor poking you in pressure spots that aren't painful in a healthy person but extremely painful for those who are unwell. The physiotherapy cured my fibroymalgia, almost all the painful pressure points that resulted in the diagnosis were back to normal. This ruled out the muscle factor to my pain. What else could be causing the burning, stabbing, aching chronic pains in both of my legs? We started thinking deeper about the nerves themselves. I got sent to a Neurologist that was so well known in the medical community she actually moved out of town to get away from the unwanted additional patients. But my dad is a doctor and knew her and found her so she examined me and declared a diagnosis of her own: Post H1N1 Neuralgia. Flus are known to very rarely cause nerve damage in severe cases. They just plop whatever flu you had, H1N1 in my case, and put it in front of the word neuralgia, neurological pain. We also discovered via blood testing antibodies that I also had a side infection of strep throat simultaneously with swine flu which could cause some extra havoc in that regard. What wasn't certain at the time is what specifically attacked my nerves, was it the virus itself? Or was it my own immune system trying to purge the virus from my body while causing collateral damage to my nerves? We also didn't know if the actual electrical signals were being sent correctly or if it was just the pain receptors firing unwarranted.
Without those answers you cannot attempt to cure anything so I got referred to the top neurologist at Sick Kids Hospital (Which I suppose would make him one of the top in the world.) Unfortunately as one might expect the appointment wait time was many months away.
What the first neurologist could tell me was that she has a group of teen patients all with post viral neuralgia like me, and that some were in wheelchairs. Most weren't able to attend school. She then proceeded to tell me I was faring the best out of all of them which made me feel pretty good about myself. I also had 3 separate MRI's which involved the technicians sticking me into the big loud magnetic machines for an hour to get extremely detailed X Rays. I got pictures of my brain (for any visible damage which could interfere with my nervous system) lower back (most nerves going into the legs start from the lower spine so we looked for the potential of interference there) and of course my legs themselves just in case something was going on regarding my bones and such. They all turned out negative which is why nerve damage made so much since because muscle inflammation would've appeared on the MRI and I had burning and sharp pains which practically spell out nerve damage. So my doctors and I were pretty confident on this lead and we now awaited our appointment with the head Neurologist at Sick Kids to give his input.
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