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.
Saturday, February 12, 2011
Thursday, February 3, 2011
Tell It To Me Straight Doc
At this point I had been sick at home lying on a couch for hours on end with some still unidentified bug and it wasn't showing any signs of going away. In fact, I was still getting worse. I was coughing and sneezing up the equivalent of Hurricane Katrina. My body temperature was changing so rapidly that I would start shivering, put on a sweatshirt, then start sweating only to throw it away before I could even get it on.At this point we were quite certain it was no common cold. It was time time to visit my family doctor. I got my throat swabbed and was physically examined and the physician plainly said that I have H1N1 Influenza. How could he know this without running any tests yet, you might be wondering? Well, then I ask you, what other flu do you get in the summer? None. That's why the winter is called flu season, and why Swine Flu was caused so much panic among the populace. Everyone was getting sick in the summer. That's the winter's job this new flu stole! I was informed it's no big deal, just a flu, and so I get treated as if it was any other flu, meaning with an antiviral medication called Tamiflu. Unfortunately for me, it didn't help all that much and my state of being continued to decline to the point where it was the worst I'd ever felt in my entire life.
The pain started off simply as an especially severe form of normal flu body aches. Even though I'd been lying on a couch for weeks everyday it felt like I had just run a marathon. One big difference is that I found my legs weren't tender to the touch. The only thing that made them worse was standing or walking. It was so generalized that it encompassed the entirety of my legs and arms, so if a doctor told me to point to where it hurts I would have trouble. It existed from the bottom of my thigh to the top of my ankles. The pain worsened along with the illness and soon intermittent sharp stabbing pains started popping up all over my body. This flared up very frequently and felt like attempting to stand on legs that had millions of tiny knives embedded within it. Months later with testing we found out I had a secondary strep throat infection at the same time, which is a disease that can often cause neurological problems. This seemed to be the case for me because I quickly developed burning pain in my legs on top of everything else. As problems piled up it didn't take long for it to be too much for a previously healthy 14 year old to handle.
Parallel to my pain issues were my rapidly worsening sleep issues, insomnia for the most part. I only made it through the end of middle school because they cancelled my exams. When I reached high school my situation was worst than ever. Even when I forced myself to get out of bed I simply fell asleep in class. We began trying out different sleeping and pain pills. Lyrica was effective in treating only my burning pain, which was the least severe of my 3 pain layers. For some reason all the sleeping pills we tried weren't strong enough and it took many years for me to get to a dose that was actually helpful in any way.
What I was experiencing as a result of my uncontrollable coughing was a sense of impeding doom which was a first for me but not the last. Thankfully this period of time didn't last that long. My flu-like symptoms start going away except for the muscle pains covering my arms and legs. I didn't think much of it because it's common that the inflammation left over from getting rid of a virus can take awhile to die down. This pain still kept stopping me from returning back to school. This had my parents saying, "What the hell, why aren't you going? You're clearly not sick anymore, I can see it". It was true, the virus was gone; but the pain wasn't improving at all. I took anti-inflammatory medications to limited degrees of effectiveness. This led to a new theory, that I was was simply deconditioned as a result of my transformation into a couch potato for the three weeks I had the flu. This would supposedly explain why doing even minor menial tasks as simple as walking caused me such pain I accepted the possibility of what my doctors were telling me so we got me on a workout/physio routine. This wasn't to get a hot beach bod or sexy muscle tone, just to get my healtht self back. I started out using the weight machines in my basement and would soon evolve into a pro, but this would only solve a small part of the problem.
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 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 was so on edge from these new pains that I had a breakdown at school over unfairness in the science fair. Not because it actually upset me academically, it was almost all from pent-up frustrations regarding my health at this point I still expected the issue to resolve itself soon.
Except it didn't. The leg pain remained and never went away, even for a moment. The pain slowly diminished in my arms and so I found myself working out almost entirely with my arms. 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 hell down!" coping becomes quite difficult. Staying at camp in 2009 proved to be an immense challenge but I survived by skipping out on many of my favourite physical activities
The pain started off simply as an especially severe form of normal flu body aches. Even though I'd been lying on a couch for weeks everyday it felt like I had just run a marathon. One big difference is that I found my legs weren't tender to the touch. The only thing that made them worse was standing or walking. It was so generalized that it encompassed the entirety of my legs and arms, so if a doctor told me to point to where it hurts I would have trouble. It existed from the bottom of my thigh to the top of my ankles. The pain worsened along with the illness and soon intermittent sharp stabbing pains started popping up all over my body. This flared up very frequently and felt like attempting to stand on legs that had millions of tiny knives embedded within it. Months later with testing we found out I had a secondary strep throat infection at the same time, which is a disease that can often cause neurological problems. This seemed to be the case for me because I quickly developed burning pain in my legs on top of everything else. As problems piled up it didn't take long for it to be too much for a previously healthy 14 year old to handle.
Parallel to my pain issues were my rapidly worsening sleep issues, insomnia for the most part. I only made it through the end of middle school because they cancelled my exams. When I reached high school my situation was worst than ever. Even when I forced myself to get out of bed I simply fell asleep in class. We began trying out different sleeping and pain pills. Lyrica was effective in treating only my burning pain, which was the least severe of my 3 pain layers. For some reason all the sleeping pills we tried weren't strong enough and it took many years for me to get to a dose that was actually helpful in any way.
What I was experiencing as a result of my uncontrollable coughing was a sense of impeding doom which was a first for me but not the last. Thankfully this period of time didn't last that long. My flu-like symptoms start going away except for the muscle pains covering my arms and legs. I didn't think much of it because it's common that the inflammation left over from getting rid of a virus can take awhile to die down. This pain still kept stopping me from returning back to school. This had my parents saying, "What the hell, why aren't you going? You're clearly not sick anymore, I can see it". It was true, the virus was gone; but the pain wasn't improving at all. I took anti-inflammatory medications to limited degrees of effectiveness. This led to a new theory, that I was was simply deconditioned as a result of my transformation into a couch potato for the three weeks I had the flu. This would supposedly explain why doing even minor menial tasks as simple as walking caused me such pain I accepted the possibility of what my doctors were telling me so we got me on a workout/physio routine. This wasn't to get a hot beach bod or sexy muscle tone, just to get my healtht self back. I started out using the weight machines in my basement and would soon evolve into a pro, but this would only solve a small part of the problem.
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 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 was so on edge from these new pains that I had a breakdown at school over unfairness in the science fair. Not because it actually upset me academically, it was almost all from pent-up frustrations regarding my health at this point I still expected the issue to resolve itself soon.
Except it didn't. The leg pain remained and never went away, even for a moment. The pain slowly diminished in my arms and so I found myself working out almost entirely with my arms. 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 hell down!" coping becomes quite difficult. Staying at camp in 2009 proved to be an immense challenge but I survived by skipping out on many of my favourite physical activities
Wednesday, February 2, 2011
How It Started
Let me paint you a picture. I was a seemingly healthy kid, about to finish Grade 8, exams were coming up, it's the end of May and the Swine Flu outbreak in Mexico is escalating and. As usual, I was worrying I'd somehow get the virus. I got sick quite easily in general my whole life and it resulted in maybe a little paranoia regarding germs. I was one of those kids that always gets whatever bug is floating around the schools and when there's such uproar over the swine flu pandemic it's easy for me to get frightened. Even the parents of the friends I carpooled with started to suspect I was simply lazy. I would miss so many classes that some teachers started questioning if I was missing class just because I was bored or something along those lines. I wasn't surprised they didn't believe me. When I heard classmates were getting sick I even skipped school for a couple of days but came back because I was about to make honor roll and wasn't willing to let some media hyped bug stop me from achieving my goals. Most would agree skipping school before exams isn't the best strategy for making honor roll either though. So back to school I went, but not ill prepared, not by a long shot. Not only was I being excessively paranoid (not letting friends touch me, not using stair rails, etc) but I carried my own portable Purell bottle! When my friends asked why I was being so weird I informed them off the swine flu crisis. As soon as I finished my explanation they all asked for some but that would kind of defeat the purpose of not touching people wouldn't it? It was fine though, I happily squirted some into their hands without letting them touch the bottle itself. The day goes fine, I'm not coughing up blood, so I'm happy enough. How quickly things changed.
The H1N1 Influenza Virus is spreading and spreading across the globe and has began working its way through my school. I was squirting purell into my hands at each class and still staying away from friends. Soon after the school day ends Facebook explodes with the news that a kid at my school (no naming and shaming) has been confirmed to have contracted the virus. Parents get notified that it's not an isolated case, four students have been infected. It was a good thing I had been been taking all the necessary precautions right? The school claims they will only shut down if the number of infected students reaches ten. Sounded like a recipe for disaster to me, so I didn't go, along with half the school. I spent the day playing games, studying for exams, you know the usual and, uh, coughing. Coughing? Why am I coughing? Huh, must be allergies... or so I thought.
If the foreshadowing wasn't enough let me explain that I was now officially sick, but this was just the beginning. At this point in time (June 1, 2009) I thought I was getting a measly inconsequential cold. Good thing there's plenty of crap in the news about H1N1 being declared a pandemic right? No. It didn't even cross my mind. I must simply have a cold; but then I woke up feeling like death. The sickness simply wouldn't go away. I spent the next few days lounging around, playing video games, what most teenage boys do when they're sick home from school. Your probably thinking to yourself, "This is a pretty boring story."Yep, you're right. Might as well stop reading now because surely I'll be all better tomorrow right?
I was a few days into the initial sickness It was very possibly a glorious day outside. The hell if I knew though, I spent the entire day lying on the couch watching TV. I didn't even have the energy to play Call of Duty! That's how you know I must be really sick. At this point I had the balls to admit to myself it was no cold. But swine flu? Nah. The next day was my birthday. I was just waiting for my awesome present to get better, because god loves me and always does what's best for me. That last line is open to your interpretation. Back to to my sickness, I was somehow getting worse, I began vomiting and my throat was so soar I could barely talk. I probably coughed enough times to infect all the imaginary friends that were keeping me company. I was home alone most of these days.
It was June 3, 1995, my *cough* birth- *sneeze* day! *vomit* You get the idea, I was very very sick. What do I decide to do while I'm still lying on the couch all day? Watch a House TV show marathon! Not really sure why I did this, seeing people die in hospitals while you're more sick than you've ever been is great for your mental well being I hear. No one remembered it was my birthday. I was too busy being sick. I finally gave it away by saying, "This virus is quite the birthday present, eh?" All conversations took part from my nice comfy quarantine spot on the end of the couch, which is right across the kitchen. No one paid it much heed... except for my sister. She went to make me a birthday card which is still on Facebook, and it is the only picture of me while I had swine flu (even though you can only see my hand holding the card... it still counts! Happy birthday to me. Now the enjoyment of birthdays is tainted because it also coincides with getting sick. Over the next 2 weeks I spent all day lying on that same spot on the couch and watched the first 4 seasons of House. I was getting sicker everyday, I knew this was all building up to something.
The H1N1 Influenza Virus is spreading and spreading across the globe and has began working its way through my school. I was squirting purell into my hands at each class and still staying away from friends. Soon after the school day ends Facebook explodes with the news that a kid at my school (no naming and shaming) has been confirmed to have contracted the virus. Parents get notified that it's not an isolated case, four students have been infected. It was a good thing I had been been taking all the necessary precautions right? The school claims they will only shut down if the number of infected students reaches ten. Sounded like a recipe for disaster to me, so I didn't go, along with half the school. I spent the day playing games, studying for exams, you know the usual and, uh, coughing. Coughing? Why am I coughing? Huh, must be allergies... or so I thought.
If the foreshadowing wasn't enough let me explain that I was now officially sick, but this was just the beginning. At this point in time (June 1, 2009) I thought I was getting a measly inconsequential cold. Good thing there's plenty of crap in the news about H1N1 being declared a pandemic right? No. It didn't even cross my mind. I must simply have a cold; but then I woke up feeling like death. The sickness simply wouldn't go away. I spent the next few days lounging around, playing video games, what most teenage boys do when they're sick home from school. Your probably thinking to yourself, "This is a pretty boring story."Yep, you're right. Might as well stop reading now because surely I'll be all better tomorrow right?
I was a few days into the initial sickness It was very possibly a glorious day outside. The hell if I knew though, I spent the entire day lying on the couch watching TV. I didn't even have the energy to play Call of Duty! That's how you know I must be really sick. At this point I had the balls to admit to myself it was no cold. But swine flu? Nah. The next day was my birthday. I was just waiting for my awesome present to get better, because god loves me and always does what's best for me. That last line is open to your interpretation. Back to to my sickness, I was somehow getting worse, I began vomiting and my throat was so soar I could barely talk. I probably coughed enough times to infect all the imaginary friends that were keeping me company. I was home alone most of these days.
It was June 3, 1995, my *cough* birth- *sneeze* day! *vomit* You get the idea, I was very very sick. What do I decide to do while I'm still lying on the couch all day? Watch a House TV show marathon! Not really sure why I did this, seeing people die in hospitals while you're more sick than you've ever been is great for your mental well being I hear. No one remembered it was my birthday. I was too busy being sick. I finally gave it away by saying, "This virus is quite the birthday present, eh?" All conversations took part from my nice comfy quarantine spot on the end of the couch, which is right across the kitchen. No one paid it much heed... except for my sister. She went to make me a birthday card which is still on Facebook, and it is the only picture of me while I had swine flu (even though you can only see my hand holding the card... it still counts! Happy birthday to me. Now the enjoyment of birthdays is tainted because it also coincides with getting sick. Over the next 2 weeks I spent all day lying on that same spot on the couch and watched the first 4 seasons of House. I was getting sicker everyday, I knew this was all building up to something.
Subscribe to:
Posts (Atom)