This turned out to be about 4x as long as I was hoping for, but I tried to include as much important information as possible...
I'm not sure where to start or what to say. I suppose I should just start at the beginning... My parents were in their mid 40's when they had me. I was always a heavy kid, and when I was in 3rd grade I really started putting on a lot of weight. I was, by far, the heaviest kid in school.. I always seemed to have back pain. I was always hunched over when walking or sitting, I thought, because I carried most of the weight on the front of me. When I was in 8th grade and at my heaviest (200), I decided that I didn't want to spend my life being obese. I began eating normal portions and I started to bike. I biked day after day, eventually dropped 88 pounds and I felt great! My back still ached, but the weight was gone and I felt alive.
Then in August 1997, while out for my morning bike ride, I crashed. At least I think I crashed. My head has never been the same. My parents told me that when I returned from my bike ride (which lasted hours beyond normal), I was repeating the same phrase over and over again. I hit the front right side of my head, the cat-scan showed that I suffered from a 'Concussion and a Cerebral Contusion'. I lost a lot that day... I didn't know any of my friends or family - I couldn't remember who they were. 2 days after the accident when I started high school, I was a wreck. I couldn't read or do simple math at all.. Prior to the accident I had been a straight-A student. My mother would sit down with me every night after school and help me for hours on my homework. On top of everything else that was going on - back pain.
After I hit my head, I was depressed. I couldn't bike anymore, my head was too badly damaged - even walking gave me a headache. I returned to what had always given me comfort before I started to bike - food. I ate. I ate and I ate and I ate. I gained all the weight back, and more. My back pain got worse. It took nearly a year before my head stopped pounding, my skull stopped oozing, and things starting making sense again .. sort of. My memory has been shoddy ever since.
The next thing that happened which, I'm not sure is relevant to my back pain or not, occurred on December 23 of 1999. I had another disastrous accident, this time with some farm equipment. I was helping my father drill a hole for a telephone pole, using the tractor and drill. It was cold, and I happened to be wearing a baggy coat. The drill was caught on some roots in the ground, so I was told to jiggle the arm and help the drill go through the frozen ground. My baggy coat was hanging down a bit too far, the tip of it got caught on the shaft powering the drill and that's all it took. I was instantly sucked in and thrown around the shaft of the drill like a rag doll. It is simply a miracle that I lived. I broke my left arm, and had a lot of damaged skin along the left side of my head, my body, and down my left arm.
After I recovered from that episode, I returned to school and felt even worse about myself. I ate more. When I hit 300 pounds my Junior year in high school, I had another "dear god" moment. My back pain was at an all time high. I had tried tylenol, aspirin, ibuprofen, excedrin. Nothing worked. I was so sick of being fat. I stopped eating and started biking. I lost 115 pounds in a little over 4 months. I looked white as a ghost and I could barely walk. Once I hit the weight I was aiming for (185), I started eating very small portions whilst keeping my exercise level very high. My back still ached.
When I entered into college I finally had my weight under control, but my back still ached. I had memory issues, but I found ways to remember things long enough to take tests. I started 'smoking' to ease the pain. It helped a lot. When I wasn't smoking, I hurt, like I always had. Nobody seemed to have an answer for my pain. None of the meds were working (non-narcotic), I was exercising regularly, I started swimming, running, continued my biking. Nothing was knocking the pain - that I had felt my entire life - down one bit. I went to a physical therapist for a few months. Nothing. Exercise balls, personal trainers. Nothing.
When I graduated from college, I gave up smoking. In my family its very bad if you "smoke the marijuana". After explaining all this (to the best of my ability) to my doctor, he started me out on a low dost of oxycontin. He said that I would be on it until we found the source of my pain. He sent me all over the place. X Rays, cat scans, MRI's, bone scans, I can't even remember all the places I've been! For YEARS it seemed like, I was going to every doctor that this state had to offer .. with no results. Nobody could find anything. One spial specialist told me it appeared that I had a "minor scholiosis" but nothing that should cause the amount of pain I was in. Another doctor told me that my pelvis was shifted slightly forward, and my hamstrings were VERY tight (which they always have been), and that may be causing some pain, but nothing like I was describing. A neruo-something told me that I was faking my pain to get meds. Every doctor had something very different to say. My PCP was still perscribing me a low dose of osycontin, which WAS helping. Then one day during a follow up appointment, which I went to with my father for support, my PCP told me "nothing seems to be showing up no matter what kind of testing we do. I don't feel comfortable writing you a perscription anymore for narcotics. Someone your age shouldn't have this kind of pain. I'm sorry. Have a nice day." I got upset, we left.
I switched PCP's. Then I called a pain clinic, and made an appointment. I went in, with my girlfriend at the time (who worked in an ER), and we told him [above] to the best of our ability. He said that he would have no problem continuing the prescription, and he wanted to try out some new avenues. He did trigger point injections, and radio frequency nerve block (I think it was called). This numbed the area a bit, but I 'knew' the pain was still there. It still hurt to do daily tasks, it just .. didn't bother me as much. This doctor DIAGNOSED me with Rheumatoid Arthritis in my spine, and told me there was no cure - I would just have to manage it for the rest of my life.
I have always had stomach and bowel issues, I have always loved yogurt. August 2007: One morning I wake up with the WORST stomach pain I have ever experienced. I think I have food poisoning or SOMETHING from eating too much blueberry yogurt in a "i wonder what kind of blueberry yogurt tastes the best? I'll try them all" contest. I throw up and pass out more blueberry-yogurt looking stuff than you can imagine over the course of a 24 hour period. Next 2 days I lay in bed lightheaded and weak. Day 3 I try to go back to work, I can barely stand up or walk. Finally my family drags me to my PCP. The nurse takes an H+H. She looks puzzled. She takes another. She calls the doctor, he rushes in. He takes an H+H. Twice. They ask me what happened, again. They tell me my levels are so low I should be in a coma. I am sent to the ICU where they put 4 bags of blood in me, which brings me up to the minimum level of blood or w/e. I stay there under observation for 2 days, then they send me home. More testing and follow up visits show that I have several stomach and intestinal ulcers, and polyps. I eat lots of meat now and take iron tablets when I bleed. I will be on prevacid for the rest of my life.
Last year I was shingling a roof. I told my pain management doctor at the time what I would be doing, how long it would take, and that it would most likely take a serious toll on me. When I came in for the following appointment he did a urine screen. I told him I had needed to take a few extra pills because of the shingling job, he said that was fine. At the NEXT appointment, he sat me down and said "Your urine screen didn't show and oxycontin. I'm discontinuing your treatment here. Have a nice day.".. Another problem. I called my new PCP. He listened to what I had to say and continued my pain management. That's where I have been for over a year now.
I'm not sure how much of the history [above] was necessary.. But I thought maybe some of the things I've been through might be of relevance.
Now that the history is over, here is my problem.
Over the past few couple years, my pain has been getting much worse. I have been taking oxycontin (20mg a day) for something like 6 years now, and it has helped. It has helped enormously. Lately, however, my problems have been escalating. My back pain is much worse. I get cranky when I am in a lot of pain. I feel like an idiot when I go places with family or friends and I can't stand for more than 15 seconds without having to lean on something or lay down somewhere. I can still do pretty much everything that anybody else can do, but it hurts tremendously to do it. I still bike, it hurts. I still play with my neices and nephews, it hurts. I want to have kids someday, but I feel like .. what kind of a father would I be at nearly 30 years old having to sit down all the time because I am "in pain". How much worse am I going to be in 10 years? My back constantly aches. I feel like I'm headed for a wheelchair.
The pills now take the edge off just enough so I can get up out of bed and get going, but not like they used to. Nobody I know understands what this feels like. It's like I'm alone with this, and I cannot describe it to anyone and have them actually KNOW what I am feeling. I like how I used to feel when taking pills - they took the edge off, numbed my back, and I felt like I could function for a day. Now, without pills? Forget it. I can't get out of bed. The pain has got to the point where I CAN'T function without the pills. Is it the addiction side of the pills kicking in? Has my arthritis gotten worse? Do I need to up my dosage of pills? Do I even have arthritis? What is wrong with me? Should I get off the pills? I know I want to. But I'm afraid because I know how terrible it feels without them. Why in gods name am I 27 years old and I do not ever remember having a day without back pain?
Last night I sat down and talked with my mother. I cried in front of her for the first time in probably 10 years. I told her what was happening with me and the pills and the pain. She told me I needed to pursue it. I needed to ask my PCP to send me out of state to a specialist to find out WHAT THE PROBLEM IS. Someplace like boston or new york. "You don't see people flocking here for specialty back care do you? You need to go to boston."
I don't feel like getting out of bed in the morning.
I don't feel like working anymore.
I haven't biked in almost a year.
I know I'm not supposed to drink alcohol, but sometimes at night when I CAN'T sleep, I weigh my options .. how much can I drink, so I can get to sleep, and how much is that going to make me bleed in the morning? How much work am I going to miss for that? Is getting a good nights sleep that important to me? Is the stomach pain from bleeding going to be worth the sleep I'll get from the alcohol?
I know this may sound truly messed up to some people, but this is the point where I'm at. I am in pain. All the time. And I am at my wits end. I know 20mg a day might sound like nothing to many of you, but it does help. I really don't want to 'up' my dose any, because I know it will just keep having to go up .. but if that helps me live my life, is it worth it? I know it will help with the pain, but is that the right answer? Surgery? Arthritis? Scoliosis? Something else? Anybody out there with the same problem?
The pain is worsening, and I don't know what to do. I am living my life from pill bottle to pill bottle. If I didn't have pain pills to take, the pain just gets to me so bad that I don't feel like doing anything. I have gone off them for weeks at a time, and it just... hurts... I don't go through any withdrawal symptoms, I just hurt. Like I always have hurt... and it feels like I always will. I have an appointment with my doctor in 2 weeks to discuss my pain situation. Do I explain all this to him and sound like a pill popping psychopath? I know I don't have a pill problem. I have a pain problem. I can live without them, it just sucks.
Things that work to help the pain:
Having my back cracked (5-30 minutes of minor relief)
Deep tissue massage (10min-3 hours of relief, depending on the day)
And lastly, to describe the pain..
Most days, it is an 8 on the ever so famous pain scale. I remember thinking my back hurt worse than the ulcers, the day I was bleeding.
It's hard to describe what it feels like. It feels like the pain is a full unopened bag of potato chips, and if somebody just would step on the bag and crush all the chips - it would feel better.
I guess the best way to describe it is, if you have ever shut your hand in a car door. How your hand feels the next day, it's just feels like crunched bones (like frosted flakes inside your hand when you move it aches and grinds), and it throbs.
And sometimes, but not often, I get a sharp shooting pain. If I move just right I will get a VERY sharp pain in my lower back. It feels like, if I moved a little more in that same direction, something was going to break and I would be paralyzed. I also get this sometimes in my neck. If I am doing things with my upper body and shoulders, and I move just right, I get the same exact SHOOTING pain in my neck and it feels almost like my neck has been broken. My head gets hot instantly, and sweats. It only lasts for a few seconds, but afterwards I can feel my heartbeat in my head for several minutes and I usually have to sit down because I lose my vision. This, however, does not happen very often. It is the constant dragging aching grinding pain that I am most effected by.
(One last note, I am currently in pretty good physical shape. I exercise at least twice a week, I'll be doing more when the weather warms up a bit. 5'11", 210 pounds. I look like about 180, but I have very large leg muscles from biking.)
If there is anyone out there with a similar situation, or anyone who can lend any sort of insight into this .. I would love to hear from you. I apologize if any of he above information is fragmented or confusing, I did my best to have it all make sense.
Physical Therapy (3 months, twice I believe)
Workout DVD's (Round of P90, 2 Rounds of P90X, 1/2 round of Insanity)
Physical things of Importance:
Grossly Overweight until adulthood
Bad head injury 1997
Broken arm and trauma to body and back 1999
Stomach and intestinal Ulcers