I have been having muscular pain going on seven years now. I have gone through a lot, more than most would even begin to understand. It’s hard to write something so painful all in couple of paragraphs that has affected so much in my life. I’m not sure where to start, but to fully understand my situation I feel the best way is to start from the very beginning. I can remember it started back when I was 15 or 16 years old. A muscle, (I think the digastric) right under my jaw would sometimes push down all of a sudden. This would usually happen when I yawned or opened my mouth too wide. It felt like I lost total control of my voluntary muscles in my jaw. Once this occurred, there was a force of downward pressure in which the muscles it affected was trying to move accordingly. I would push up on my jaw until the pressure subsided and eventually moved back up. Going through this experience was more scary than painful because during these episodes, I lost control of my jaw and didn’t know what to do. Unfortunately, these episodes occurred more frequently as I got older.
In the summer of 00’ one of my episodes happened again. But this time was different. The muscle didn’t retreat upward as usual. It stayed down. Afterwards, I didn’t have any more episodes, but a couple months later I started having pain on both sides of my jaw. The pain was unbearable. I didn’t know what to do. So I went to my childhood orthodontist whom I have know for years. He asked me if I was hit in the jaw recently, I told him no. He then stated that I had inflammation on both sides of my jaw and some scar tissue. I was told that my jaw was trying to heal itself. He then asked if I clenched or grind my teeth, but I didn’t. I was advised to stay off caffeine and the pain would eventually get better. I did what he advised, but nevertheless the pain got worse. In the first year, the pain originated in my jaw area, forehead, back of my head (occipital), and under my jaw. At times, the pain was so intense I couldn’t get out of bed. I went to many doctors afterwards. I was given neurotin and depression medications, which had no effect. Since I couldn’t get any professional help, I decided to do my own research.
I later found out about TMJ and decided to see a specialist in my area. The doctor told me, that I had a special case due to the fact that I didn’t grind my teeth. He stated that with the use of a splint, my case would get better. I used the splint everyday for nine months, but the pain only seemed to increase. The pain now progressed to my neck. Thus my neck became stiff and difficult to move. I then noticed cracking in my ear when I opened my mouth or flexed my jaw muscles. Cyst then began to appear under the sides of my ears and I had swollen lymph nodes as well. I began to have trouble with my sinus also.
I then went to see an ENT. The doctor took an x-ray, and inflammation soon was discovered in my sinus area. He gave me a steroid nose medication for it. On the follow up visit, the inflammation was still there, so he decided to give me an MRI of my head and neck. The MRI revealed the inflamed areas, but no structural damage to my TMJ. I didn’t know what was happening, but all I knew that my situation was declining quickly. The pain was growing stronger and soon began to affect other muscles in my body. I also had physical changes in my body as well. The inside of my mouth felt as if it was getting smaller and I would constantly have to pull the cheeks off of my teeth. This caused irritability in the lining of my mouth. I would always find myself biting my cheeks due to the fact they were always pressed up against my teeth. I would always bite the sides of my mouth because of this and they would eventually bleed and scar up. There also would be the outlines of bite marks on each side of my mouth. On going changes affected teeth, bite and appearance.
In 2003 through 2004, I began to have back pains. The first few times were gradual as if someone was going down my back with a feather. I began to notice that even walking was cumbersome. I even started to have pain when I sneezed. The most severe occasion, occurred when I was in so much pain my back locked up. I couldn’t move at all. The most I could do was lay down. If I stood up, it felt like my back would snap. I was taken to the emergency room and took x-rays. The hospital diagnosed my episode as back spasms and gave me a muscle relaxant for it. Although I haven’t had a back spasm since, the pain continued. The pain I felt as if it was spreading down affecting each muscle in my body.
In 2005, I felt everything was drastically wrong and I had very little hope. I saw a neurologist and explained all that I had been through. He assessed my situation and gave me a steroid shot inside my mouth. I didn’t notice any difference in how I felt until the very next day. When I woke up the next morning and got out of bed, I felt 60 pounds lighter. I could actually move my body without restriction or discomfort. My jaw still felt weird though and out of place. I began to see a change in my self and others around me. Only then, I realized how restricted I was. For the first time, I finally felt normal in five years. I felt I could once and for all start my life again, but it was not to be. The pain and all its discomfort started coming back. I told my doctor the news and I received the same treatment again. This time, no change took place at all. I don’t know if the doctor gave me the same dosage or injection. I kept receiving shots for about three to four months afterwards until I decided to give up. Afterwards I went to see a pain specialist. He told me that he or any other doctor couldn’t give my steroid shot due to the fact I had enough steroids for a whole year. I didn’t know if he was telling the truth or not. All I wanted was a way to end the pain. The doctor wanted an MRI, but I didn’t want to go through that again. (I had six up to that point.) He only seemed to be focused only on that for some reason. Now I’ve been coping with this situation for seven years.
Throughout this time, I found some things to give me some relief, even for a brief moment. I would take Nyquil (w/pseudophedrine) and pain medication. I would take a small towel and roll it up and put in under my chin. Then I would put pressure on it and push upwards with my hand, like I did in the past. I would lay on a pillow and have it positioned against the back of my head, which would relieve some of the pressure.
I have often wondered if I can go forward with no answers. I came to the realization that I cannot
** What I feel that has gone on is that my jaw has been pushed down and is not aligned correctly, which is causing strain on the muscles in my face, neck, and back…this pain was not sudden by no means, it occurred gradually and progressed into what it is now. **
I am currently seeing a Cranial Chiro, and am in the process of seeing a neuromuscular dentist..if anybody can give me some advice on I would appreciate it.