The neurologist who diagnosed me offered me the chance to participate in a case study to test the efficacy of what he called a vibro-acoustic chair. You put it on your chair and then lie your back on it which lets you feel the soothing vibrations. As a little side feature the chair also plays music in time with the vibrations. There was a more energetic mode for mornings and a more relaxing mode to be used before bed. The music didn't really accomplish anything and I didn't expect it to, but the vibrations helped undo the knots in my back and aids me in falling asleep. The chair had already been tested and deemed effective in the treatment of a similar condition known as fibromyalgia. This made them want to compare the results to those in people with Ehlers-Danlos Syndrome (AKA me.)
The same neurologist refereed me to a physiotherapist who sort of specializes in managing EDS. He has 16 other patients with EDS all with varying types and severity. (He claims I'm on the severe side but he's seen worse.) He told me one hopeful story of a girl with EDS who was out of school for 4 years because she was plagued with horrible fatigue and pain. This is a similar situation to the one I'm in, and eventually her fatigue symptoms simply worked themselves out. We got to work right away on strengthening the muscles that surround my joints. My joints would never be able to stabilize themselves, so the most effective method is simply getting your other muscles to do the extra work. Trouble is, this causes the muscles to be very tight so he also pressed on many trigger points to help solve that even just a little bit. I have to say this is one of the most painful things I have had to go through. The muscles are always so tight that they're pressing on all kinds of nerves and so when he pushes on my shoulder the pain radiates all the way into my head like a splitting headache.
We tested my walking ability to give us a point of reference for improvements in the future. I had a horrible stumbling gait and heavily leaned on one side, but it didn't stay that way for long. Week by week we documented my progress and now my gait has normalized except during localized pain spikes. It wasn't just during appointments that I did physiotherapy, it was something I worked on every day. Eventually I progressed to the point where my physiotherapist decided we should no longer focus on joint strengthening and should instead simply do our best to manage whatever symptoms pop up. This means entire appointments are now dedicated to pushing trigger points on my shoulder which still pops out (subluxates) constantly. Once my family got a pool in our backyard I was encouraged to swim as much as possible since this type of exercise is very easy on the joints. My legs were too bad to do effective kicks so I pretty much stuck exclusively to breast-stroke and back-stroke. I would never stop swimming because of muscle fatigue, it was always the increasing levels of pain that stopped me. Meanwhile I couldn't get the idea of my Tarlov cysts growing and causing future problems out of my head. It would be even worse if I forgot about this though because it might one day explain new symptoms that could pop up if it grew.
Tuesday, May 17, 2016
Tuesday, May 3, 2016
The Nose Knows
I was very hopeful that the medical marijuana would work. You can't help but hear all these stories of those with chronic pain extolling the virtues of marijuana, and so I knew I had to try it for myself. The process didn't end with the prescription though. The doctor who is a canabanoid specialist insisted on raising the dosage very slowly. We started at 8% THC (street purity is around 23-27%) and at that dose I felt absolutely no benefit. At 16% I started feeling improvement and with that encouragement we raised once again to 22% THC because we'd rather I use more marijuana and less of other prescription drugs.
Shortly before I was prescribed weed it was time for me to work on improving my sleep through what is called sleep restriction therapy. The doctor said to imagine that you're putting peanut butter on bread. The longer you do it for the more it spreads out and weakens. To counter this I would have to set my alarm at 8 am every day and was not allowed to go to sleep regardless of how tired I was until late at night. Yes, this strategy made my sleep cycle more efficient, but it was not able to make up for the lost total hours of sleep. This dragged on for months and was truly one of the most torturous segments of my life. I didn't feel even anywhere close to well enough to hang out with friends. I was constantly missing family dinners. Even video games were denied to me again because I was simply too tired to play. For the most part I watched TV which of course I felt too crappy to enjoy. The doctor also dictated that I should partake in light therapy. This sounds nice but in reality I had to buy a fucking giant, expensive lamp and shine it full in my face for an hour every morning. The idea of this was to force my body to quit using Melatonin (the horomone that makes you sleepy) in the morning and to encourage it to release it in the evening when I'm going to bed. This helped move my sleep schedule to more normalcy, but the continuing poor quality of sleep left me unable to function. Then came the marijuana. It helped me fall asleep so we could orient the other medications to focus on staying asleep. I was finally well enough to go back to school!
I was back at the new small private school (classes starting at 11:30 am instead of 2 pm) which felt great but that is not to say it was all smooth sailing from there. You see, while I'd been dealing with my renegade body parts I was neglecting attention to my nose. Yes, my nose and I have been through a lot together. About six years ago I was at summer camp and was playing a game called "Mosh Ball." To give you an idea of what we're talking about here, this game is a combination of football, kickball, and maybe basketball; I forget the rules. Anyway, I was chasing after the ball and someone on the opposing team was doing the same. The problem? The problem was that he was a councilor twice my height and weight. We both dived for the ball at the same time and my face collided with his shoulder, breaking my nose for the first time. Later that summer someone accidentally jabbed their soldier into my nose accidentally while dancing. It didn't end there either, at winter camp someone running through the hallways accidentally smashed a door into my face, breaking my nose again. That third time I simply reset the nose myself. So you see, my nose is a trooper. He was a little crooked, sure, but that just added character. Unfortunately I eventually realized my breathing at night was problematic due to the way the nose broke. Why is being able to breath through my nose so important? Well, at night I have to take a lot of sleeping medications which all have the side effects of drying me up. Opening my mouth to breath makes this worse and I would wake up at night with my tongue feeling like sandpaper. I was sent off to a nose doctor who then preformed septoplasty surgery to fix my deviated septum. Recovering from that surgery was another extremely uncomfortable period of my life, because my nose was constantly bleeding and stuffed with gauze. This meant my nose was now completely blocked which of course made the dryness issue fifty times worse. On the bright side my breathing slightly improved and my nose looks much better now.
Shortly before I was prescribed weed it was time for me to work on improving my sleep through what is called sleep restriction therapy. The doctor said to imagine that you're putting peanut butter on bread. The longer you do it for the more it spreads out and weakens. To counter this I would have to set my alarm at 8 am every day and was not allowed to go to sleep regardless of how tired I was until late at night. Yes, this strategy made my sleep cycle more efficient, but it was not able to make up for the lost total hours of sleep. This dragged on for months and was truly one of the most torturous segments of my life. I didn't feel even anywhere close to well enough to hang out with friends. I was constantly missing family dinners. Even video games were denied to me again because I was simply too tired to play. For the most part I watched TV which of course I felt too crappy to enjoy. The doctor also dictated that I should partake in light therapy. This sounds nice but in reality I had to buy a fucking giant, expensive lamp and shine it full in my face for an hour every morning. The idea of this was to force my body to quit using Melatonin (the horomone that makes you sleepy) in the morning and to encourage it to release it in the evening when I'm going to bed. This helped move my sleep schedule to more normalcy, but the continuing poor quality of sleep left me unable to function. Then came the marijuana. It helped me fall asleep so we could orient the other medications to focus on staying asleep. I was finally well enough to go back to school!
I was back at the new small private school (classes starting at 11:30 am instead of 2 pm) which felt great but that is not to say it was all smooth sailing from there. You see, while I'd been dealing with my renegade body parts I was neglecting attention to my nose. Yes, my nose and I have been through a lot together. About six years ago I was at summer camp and was playing a game called "Mosh Ball." To give you an idea of what we're talking about here, this game is a combination of football, kickball, and maybe basketball; I forget the rules. Anyway, I was chasing after the ball and someone on the opposing team was doing the same. The problem? The problem was that he was a councilor twice my height and weight. We both dived for the ball at the same time and my face collided with his shoulder, breaking my nose for the first time. Later that summer someone accidentally jabbed their soldier into my nose accidentally while dancing. It didn't end there either, at winter camp someone running through the hallways accidentally smashed a door into my face, breaking my nose again. That third time I simply reset the nose myself. So you see, my nose is a trooper. He was a little crooked, sure, but that just added character. Unfortunately I eventually realized my breathing at night was problematic due to the way the nose broke. Why is being able to breath through my nose so important? Well, at night I have to take a lot of sleeping medications which all have the side effects of drying me up. Opening my mouth to breath makes this worse and I would wake up at night with my tongue feeling like sandpaper. I was sent off to a nose doctor who then preformed septoplasty surgery to fix my deviated septum. Recovering from that surgery was another extremely uncomfortable period of my life, because my nose was constantly bleeding and stuffed with gauze. This meant my nose was now completely blocked which of course made the dryness issue fifty times worse. On the bright side my breathing slightly improved and my nose looks much better now.
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