Discussions By Condition: Medical Stories

SIJD, no one can help,PLZ HELP!

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • September 20, 2010
  • 08:04 PM

I, along with hundreds of thousands of people, mainly women, have the debilitating condition SI Joint Dysfunction. I was 18yrs old and weight 97 pounds when I became pregnant. Around the 6th month I began to experience what I knew was abnormal lower back/butt/leg pain. I had never in my life felt something so horrific. My daughter is 8 years old now and since her birth, there has not been one single, and I am not exaggerating, not one single day that I have not woken up in pain. I am not talking about a pulled muscle, a sprain, a break, a fracture, a burn.. I am talking about waking up, but not opening your eyes because you know that once you open your eyes, it's real. The pain is real. Everyday, I slowly open my eyes as pain quickly sets into my SI Joint and legs. I start to cry at that point while I pray.. and I mean really pray for my ceiling to fall on my face and kill me. I pray that I am driving down the road and I run off the road and instantly die. I pray that someone hits me with their car when I am checking the mail I pray that an airplane will fall out of the sky and kill me. I know that everyday when I open my eyes that I am going to be in non-stop pain that makes me want to DIE every second that I am conscious. 5 years ago I was driving down a country road, I was driving in a vary dangerous way, I was going 90 and I was very very upset with my boyfriend at the time.Next thing I know I wake up on the side of the road and my car is upside down on fire in the middle of the road. This road was completely deserted and it was past midnithg.. no one was coming to save me. I looked for electricity through the trees and saw a light.. I walked down the middle of the road in bare feet.. bleeding.. holding my neck.. but determined to get help. I walked down the rocky driveway trailing blood. I stopped in front of the light that I had been following for the last who knows how long. But all I saw was a deserted barn. No help. I was right about to lay on the ground and give up when I turned around, and there was a house. I RUN to this house and start pounding on the door, hysterical. This man turns out to be a preacher, and it turns out that I broke my C2. The doctors did not believe that I walked to get help. They did not believe what happened. According to everyone I talked to from that day on, I was the most lucky person on this planet. I MUST have a purpose. God saved me for a reason blah blah blah. It used to piss me off SO much when people would say that to me. I did not feel lucky to be alive at all. The pain that I was now in, was unbearable. I had a halo brace screwed into my skull for two months. It was supposed to be 6 months, but he took it off two months later. Come to find out later he was in the middle of relocating and I guess did not want to waste too much time on me. He did not even prescribe me PT until 3 months after I had the brace removed. I also had to consistantly complain about pain. I had never experienced anything like this pain. It was every where. My neck, my head, my hips, my lower back, my shoulders, my legs.. it was everywhere. I could not sleep, walk, eat, work, do anything. Eventually I became used to it. I had bad days, really really bad days. But there were no where as frequent as they are now. Now I have very very few good days. I have scars on my arms from cutting myself, because any other kind of pain was greatly welcomed. I did not cut myself because I wanted to kill myself or any thing like that, it was literally because the brain only registers the most intense pain, so I just go to the point to where I could not take my back/neck pain any longer. I have bit myself so hard that I bleed.. I have punched kicked, anything to make it stop. I have tried PT, injections, different doctors, and chiropractors. I have been to a pain management doctor. He asked me what meds I had tried and then prescribed me exactly what I told him would not work. Next he gave me trigger point injections all in my back.That felt so good, the different pain, But the same familiar pain shortly, very shortly returned. When I went back for my follow up, I told him I was still in just as much, if not more pain. He asked me if I had ever tried BenGay. That is when I lost it and asked him if he realized what his job was. That he was my last resort. That did it not cross his mind that I was only standing in front of him, sobbing, completely void of pride and dignity, begging for help, that I had tried everything else that I knew to try. I had had doctors turn me away and tell me that there was nothing they could do for me and suggested that I find someone who could. No one could. So I turned to the only thing that had helped. Pills. Lortabs. At first, they actually helped the pain, or at least made it tolerable, to where I could live. Well that did not last long. I grew tolerant to them very quickly, they could not compete with the pain. So I returned to the doc. Now this whole time I either did not have insurance or I was on medicaid, I really had no where to go, and no one to help. The doctors would not give me anything more than a 5/500, even though I broke my neck. Not a single doctor for the longest knew what was wrong, they just assumed that I was a cissy, or I was chasing pills and faking it, so they just kept brushing me off. Eventually I figured out how to buy pills on the street, while at the same time discovering cocaine. A great great numbing agent, but a horrible horrible drug that does horrible things to your life. The drugs where the only thing that made my pain tolerable.. I was still in pain, the drugs did not stop the pain, but if I took enough, I didn't care about the pain anymore. I didn't notice it, I was just high. Well again, my tolerance caught up quickly, and just as quickly, I went down hill. I got really bad into drugs, lost my daughter, lost my life. I was in a very bad place. I woke up one day and high-tailed it to the west coast to work on a trail crew on the PCT. That was not very good for my back, but I knew that I needed to get off the drugs, that they were not actually helping, and I no longer wanted to just temporarily numb the pain, I wanted it to be fixed. So I got clean, came home. and tried to get my life back on track. But by then the pain was just too much for me to bear. I got a job waiting tables, which is the only job I had for about ten years, and I quickly became in the BAD pain again and I again had no insurance and had no one to help me, so I turned back to drugs. But this time the pain was so bad that the drugs escalated entirely too far. I was now onto heroin. I was stealing from my family and not caring about anything accept not hurting. My mental state is severly damaged now. I am miserable. ALL the time. I complain all the time, but I don't mean to, it just always hurts. I can't walk, I have to use crutches a lot and my legs give out a lot. I am in the ER at least once a month.. I just received $15,000 worth of hospital bills in the mail today. The ER would do xrays and MRIs and CT scans and NOTHING. Si Joint Dysfunction does not show up on tests like that. The only way is a numbing agent in to the actual joint, which I have had. I finally got desperate enough to try a chiropractor.. he told me what was wrong with me. I never noticed my right left was 2-3 inches longer than my left. He treated me for a year or so, with only very temporary relief. As soon as I twisted to sit in my car, it would pop right back out and I would feel the sharp burning pain that I was oh so familiar with. I went to PT. I have an upslip and an anterior rotation..most of the time. It also rotates the other way. I also do not have any spine curvature in my upper or lower back so that causes my hips to tips as a whole, posterior. There is so much scar tissue in my back that I CONSTANTLY crack and grind and pop and snap. I feel like I am going to fall apart at any second. I can't take it anymore. It is unbearable. It is constant. losing people in my life because I hate. I just HATE HATE everything and everyone all the time. It's not fair. What did I do to deserve this and why can no one fix it??. My doctors tell me I am abnormally flexible. But oddly enough, I can hardly move. I have spent countless hours on the internet looking at videos, articles, forums, whatever I can find to see if anyone knows how I can get help. I finally came across a support group on facebook. There is another woman in the exact same situation I am in, but she is considering prolotherapy, which scares the ***l out of us, but it gets to a point where you will try anything. She submitted something to the Dr. OZ show and I am submitting to you guys. I am currently in school to become a surgical tech. I want to get as close as I can to someone that can help me. I want to help others. We are also going to submit letters to everyone that we can. It's all about living. I want to live. I want to smile. I want to be in love and happy. I want to have just 5 minutes.. I would be in pain for the rest of my life like this if I could just have one day completely pain free I would take the pain for the rest of my life just to have some understanding and compassion and help. Please help us. I am literally begging. This is life and death. Please help us make this condition known so that someone can find a "cure" for it. I can't take anymore pills. I have gotten to where I can take 3 80mg OxyContin's a day and also still take 3 lortab 10's and still fell the pain. It is just tolerable. I have tried Fentynl Patches.. in the correct way and in the "desperate" way. Nothing.. all they do is effect my mood and brain chemistry and it just makes things worse I can't live like this.

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