I had a pretty normal childhood (at least as far as my health is concerned) until I was 18. I was watching a friends house for him while he worked in Colorado. One morning I woke up and when I tried to get out of bed I got a very sharp pain in my leg. Every time I put any pressure on it or used any muscle in that leg the pain would come. I had never felt anything so excruciating. At first I thought I must have slept on it wrong so I layed there awhile and tried again. No good. I couldn't get out of bed! The phone was downstairs so I couldn't even call anyone.
After a couple hours I finally rolled off the bed onto the floor. I was able to pull myself along the floor with my arms until I reached the top of the stairs. Now what was I going to do. At first I was mad, then I started laughing because it was so ridiculous. I mean here I am an 18 year old in the best health of my life and for no apparent reason, I can't walk! I got up on my good leg and hopped down the stairs. Laughing and screaming in pain all the way.
Finally I made it to the phone. I tried to call my parents who lived only a couple houses away but no answer. I decided to try to walk to their house. I made it in about 30 minutes but it wore me out. I must have looked funny hopping across the neighbors back yards laughing at myself.
When my mom got home, she had a friend take us to the emergency room to see what was going on with me. After some xrays and some painful prodding the doctor said I had acute sciatica. She explained the sciatic nerve and that was causing my pain. I wanted it removed from my body but I guess it doesn't work that way. Anyway she prescribed some muscle relaxers and told me to stay off my feet for at least 2 weeks. I thought I would go insane. Not walking for 2 weeks was torture to me then. Anyway the pain went away.
Then it came back a couple months later. I saw the same doctor. Same prescription only 3 weeks off my feet. It went away. It came back. A friend recommended a chiropractor. After twisting me around like a pretzel a few times, the pain went away. No drugs, no 2 weeks on my rear. Gone! A month later it was back. I went to him a couple more times and realized this wasn't working.
I went back to the hospital that I had went to the first time. After some more xrays they referred me to a rheumatologist. He told me I had rheumatoid arthritis or something close to that. The exact diagnosis didn't mean anything to me because the word Rheumatoid was all I needed to hear to start my denial process. While he described the suffering I would likely endure the rest of my life, I pictured myself shoving my foot into the part of him where the sun doesn't shine. His prescription? 12 aspirin a day! I had a prescription for him too but I kept my mouth shut.
I decided to live with it. Eventually I would get used to walking in pain I thought. And I gallant effort for about 2 weeks. Then the pain was so much I started taking the aspirin. It kept the pain down for a couple months until my stomach gave out from eating so many. My patience with my health and the doctors was wearing very thin.
I began a search for the right doctor that would cover a radius of almost 200 miles from my home. I won't list them all but I will say that I came up with at least 20 different diagnoses. None of them were right. You may see in a post from me that I have seen over 2 million doctors. Yes its an exaggeration but its close.
So now what do I do? Nothing works to cure me, nobody knows what's the matter with me, nobody understands. To most I'm a lazy hypochondriac who needs to straighten up. I know, I will get so drunk and stoned every day that I wont feel the pain. So I did. And guess what? People changed their mind about me. I'm no longer lazy cause I can work. I don't talk about pain anymore so I'm not a hypochondriac. Now I'm an alcoholic and druggie. Fine whatever. I don't care.
This kept me going for about 4 or 5 years. Until I was drinking almost a half gallon of liquor a day. I was suspended from work for 30 days for drinking on the job. I was jailed and put on probation for drunk driving. I had to straighten up. I quit my job and started college knowing I had to do something different.
I began a 2 year program for a degree in computer programming. I chose this because personal computers were really taking off and it looked like a good field to get into. During this time (around 1988) The pain really started kicking in. It mostly hit me bad at night. I would get these spasms in my upper chest and spine. I cant tell you how severe these were. Many times I thought I would die. I would be sound asleep and then it would hit so hard and fast I would leap out of bed with a scream.
My chest and back muscles would contract so tightly that it would squeeze the air out of my lungs and I wouldn't breath sometimes a minute or so. Not knowing the cause of this and the fact the doctors couldn't do anything for me but write prescriptions, I feared for my life. I went into deeper depression. I also started having panic attacks. I didn't know what would happen to me next. My wife could only cry and hold me.
For a while there I stepped out of reality. I truly felt I was in some kind of hell. I stopped fearing for my life and now wished it would end. I didn't care about anyone or anything anymore. I would go through the motions of life but all the time thinking it wasn't real. Only the pain was real.
Then one day I was riding my snowmobile along some railroad tracks and my skis got caught in them. It stopped the snowmobile instantly sending me flying off about 30 miles an hour. It happened so fast I didn't have time to react. I heard my neck crack and I was laying on the ground. It didn't break my neck but popped it or something. Anyway it brought on the spasms more frequently and I couldn't move my neck anymore.
I went to a chiropractor to see if he could do something for me. He took xrays of my entire spine and found out that my spine was fusing and he couldn't help me. He said I had ankylosing spondylitis and referred me to an orthopedic surgeon who confirmed the diagnosis.
I have to say that I was extremely happy and relieved that I now had a real diagnosis. This explained everything that I had been experiencing the past 7-8 years. The prognosis in my mind was not good but at least I knew what to expect and could deal with it.
The doctor put me on NSAIDS and physical therapy. The symptoms started to go away and with the exception of stiffness in my back and occasional pain I was back to normal. He also referred me back to the original rheumy I had seen in the beginning but I refused. I mean the guy nearly killed me with aspirin. I took the information to my local doctor and he treated me from there.
This was about 11 years ago now. Since then I've had ups and downs with this disease. I have fusion in my back, neck, and ribs. And its currently flaring up again. Exercise has prolonged the fusion but has not prevented it. I get pain literally from my feet to my head from this and I don't look forward to getting old. I try to live in today but that's not easy.
P.S. I had to quit taking the NSAIDS because it was tearing up my insides. I'm now taking Celebrex, and occasionally flexeril when I need it.