In grade-school I was always that kid who did weird, funny stuff. I have ADHD (although not diagnosed until an adult), so I'm sure that facilitated the process. I was always one to try and get a laugh, no matter to who, or whats expense - often even my own.
In about the fourth, or fifth grade I started to have some pain in my knee. I went to the doctor and she affirmatively said, without ordering an ultrasound or any other sort of diagnostic test, that I had partially torn my patellar ligament. I found this hard to believe, seeing as it wasn't an acute episode, but more something chronic.
When i was a kid, myself and my brother used to get what we termed: pulse pains. We would just get a painful feeling in the radial artery (just at the wrist) and the anterior tibial artery (inside of the ankle, just below the medial malleolus). These sensations would last for five or ten minutes, and would usually temper slightly if we applied pressure - which we frequently did. I told my mom of these 'pulse-pains' and she just brushed it off by saying: having pains in your veins is impossible.
I was always a small kid; very short, and very, very skinny. I remember hearing of one time during a swimming lesson when a woman approached my mother to remark how I resembled a child from the pictures she had seen of the concentration camps. My mom laughed and quipped about her jealousy of my metabolism. In grade nine and ten I was still the same, maybe a few inches taller. When grade eleven rolled around I had a massive growth spurt. I grew close to six foot two, gained an even 50 pounds. I just really, really got big...fast. I'm in now way suggesting that that had any bearing on my now fragile body, it was just a weird phenomena.
I had begun to take up boxing in grade ten, and by grade eleven I considered myself a pro. I was always obsessed with working out - it was a great cathartic experience, plus I just looked good! During the summer entering grade eleven I would probably say, on average, I worked out an hour and a half to two hours each day. Grade eleven finally rolled around, and so did the old routine: boxing, work-out, boxing, work-out. Lets just say that my studies weren't my primary focus - a topic for another blog.
Something happened to me in the summer of 2007, the summer before my final year. That August long weekend me and some friends had planned a camping trip. The Friday before we were to leave we were hanging out at my friends house - I kept complaining about shoulder pain. I was walking funny, and coddling my right side. My shoulder was all screwy. It was elevated and over-pronated anteriorly. It was all swollen. It was painful. I sort of made some loose guesses as to the cause of this pain: working-out at the boxing gym, fighting, training. I don't know, I think if it was a sudden traumatic thing that I would definitely remember, but I don't.
For the next four years I would be plagued by a serious of painful injuries, all of which seemed to stem from this single, injury of fate.
The year following my Injury I had real issues trying to get my doctor and family to take me seriously. No one would. My doctor said it was probably a pulled muscle, to which I replied: 'you can have a pulled muscle, a muscle this painful, for over a year'?. She responded positively. I've had dozens of x-rays, ultra-sounds, and physical examinations, all of which left me bewildered and depressed. I remember when there was a time I wasn't in pain at all, those truly were the days.
After dozens of frustrating visits with Doctors, I have finally found something that fits: Ehlers-Danlos syndrome - Hypermobile type. I score an 8/9 on the beighton scale. I think I mentioned earlier that I have ADHD. Well, this is where the ADHD comes in, and comes in strong. Over a course of two years I was a patient to Doctor Todd Bently (an orthopedic physiatrist from Hamilton, Ontario specializing in sports rehabilitative medicine), someone who couldn't figure out what was wrong with me, but knew that my complaints were at least fairly serious. Through a series of MRI's (a few of which I missed, thanks ADD!) we discovered some labral tears, and a load of inflammation. He gave me a cortisone injection in my shoulder, which didn't work. A brace for my knee, which didn't help. And disrespect for my value as a human, which made me depressed. In all fairness, I really didn't tell him much about my family. I don't have a, well, lets say normal family setting to rely on in situations where an extsensive patient history is called upon. For instance: I never mentioned my mothers scoliosis, hydrocephalus, pain, easy bruising, soft skin; my grandmothers R/A, soft skin; the family history of soft skin and heart issues. I never thought to tell him about my brothers stretchy skin and hypermobility (two of them). So I guess it's partly my fault as well. But he was a dick, lets be serious.
So, here I am now. June of 2011. I have just completed my first year of university... and I feel like I'm always on the verge of death. I've spent thousands of dollars on rehabilitation and physiotherapy, to no avail. I have double-depression (dysthymia and MDD), ADHD, and generalized anxiety disorder (with a history of agoraphobia and panic attacks). I'm in chronic pain, and every movement I make must be planned out in order to prevent more pain. More pain sucks. I'm too insecure to get a girlfriend, and too lonely to abandon my unsupportive friends. I have, however, a silver lining to this story! I found EDS! Not a lot of people understand how important it is to have a name for your suffering. Mindless suffering is masochistic, so why force people to it? We are all looking for answers, if we just stopped with our preconceptions, we would be so much farther ahead!
So thats me, my ADD, EDS, and GAD. I hope you enjoyed getting to know me, sincerely Oskar: we are all Humpty Dumpty!
[So to make you even more aware of something you are probably largely indifferent to, I'm going to list all my symptoms of EDS!]
- Pain
- Joint instability
- Recurrent atraumatic shoulder subluxations.
- Recurrent atruamatic hip subluxations.
- Recurrent atraumatic sternoclavicular subluxations
- Bi-lateral retinaculmn tears (inferior L, superior R) accompanied by peroneal tendon subluxation.
- Bi-lateral AC subluxation/ inflammation/ pain.
- Patella tendonitis, tear, and pain.
- Hypermobility of the knees, elbows, shoulders, feet, ankles, wrists, neck. (including subluxation in all)
- Cervical Instability
- Insomnia.
- Depression.
- More pain!
- Acid Reflux- bad.
- Keratoconus
- Irritable bowel syndrome.
- Brain fog!!
- Mild fever - present for months at a time.
- Tingling/ buzzing sensation on face (parasthesia)
- Headaches - Migranes
- Chronic Fatigue
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