I’m not sure how to start this , but I've been having muscular pain for going on 7yrs now. I guess I will start from the beginning; it started back when I was 15-16yrs old. A muscle (I think the digastric) right under my jaw would always uncontrollably push down once i yawned and sometimes when I opened my mouth too wide, it was like I lost total control of my voluntary muscles in my jaw; it was a downward pressure like the muscle was trying to make space or find a place to go . I would push up on my jaw until the muscle downward pressure slowly retreated back up. This though was not when my pain began, the involuntary movement of the muscle in my jaw was more scary then painful because I lost control of my jaw and didn't know what it was going to do. The downward pressure started happening more frequent as I got older. When 1 day in the summer of 00' my soph yr in college the downward pressure happened as usual, but this time the muscle didn't retreat back upward. It stayed down. After that I didn't have any more episodes of my muscle pushing downward, but a couple of months later I started having pain on both sides of my jaw.
I didn't know what to do the pain was really bad and I didn't know how to explain it, so I went to my orthodontist that had did my braces when I was 13yrs old. He asked if I was hit in the jaw recently, I told him no. He said that I had inflammation on both sides of my jaw and some scar tissue and my jaw was in the process of healing itself. He asked me if I clenched or grind my teeth; I told him i did not. He then told me to stay off caffeine and it will eventually get better. I did what he advised, but the pain got worst and began to progress. In the first year the pain was focused in my jaw area, forehead, back of my head (occipital), and under my jaw. The pain was so intense I couldn't get out of bed, I was in so much pain i didn't know what to do. I went to many doctor's...I was given neurotin and depression medications etc, which had no effect. Since I couldn't get any help, I decided to do some of my own research...I found out about TMJ and decided to see a specialist in my area. I was told I had a special case because i didn't grind, but he said he could make a splint, which would help. I used the splint everyday for about 9 months, but the pain seemed to progress. Eventually the pain moved to my neck, and I started having neck pains, I was having difficulty moving it without pain. I also noticed cracking in my ear when I opened my mouth are just flexed my muscle in my jaw too. Cyst also started appearing under both sides of my ear also and I began started having pain in my sinus area as well.
I decided to see an ENT. The Dr. took an x-rays and saw inflammation in my sinus area. He gave me some steroid nose spray and medicine for it. On the follow-up the inflammation was still there, so he decided to give me an MRI of my head and neck. The MRI came up showing inflamed areas, but no structural damage in my TMJ. I didn't know what was happening..all I knew was that the pain was progressing and effecting other muscles in my body. I also had physical changes as the inside mouth felt like it was getting smaller...I would constantly have to pull my cheeks off my teeth because it was irritaing the sides inside my mouth; it was constantly touching my teeth and pressing up against them and I would constantly pull them off. I would always bite the sides of my mouth because of this and they would bleed and eventually scar up and I would have outlines of bite marks on each side of my mouth. My teeth and bite also changed, I also noticed appearance changes as well.
In about the 3rd-4th year I started to have back pains...It started off gradually where it felt like someone going down my back with a feather...It started effecting how I walk as it started to progress. I started to have sharp pains in my back every time I sneezed as well. Eventually I had an episode where my back locked up. I couldn't move; all I could do is lay down, if I stood if felt like my back would snap. I was taken to the emergency room and was given x-rays and they diagnosed it as back spasms and gave me muscle relaxant for it. I though continued to have back pain, but not as a severe episode where i could not move, also I was having pain in my chest as well...it was like it was spreading down effecting each muscle in my body.
In 2005 after everything I was losing hope until I saw a neurologist and explained my story in short. He decided to give me steroid/numbing shot inside my mouth. I didn't notice it until the next day when I got out of bed feeling 60lbs lighter;...I could actually move freely without any restrictions, although my jaw still felt weird. I was feeling really good and ready to start my life from where I left off, but eventually a week later my back pain started to come back and everything else. I told my Dr. the news and I received the shot again, only this time I didn’t get the same results. I didn’t know if he didn’t inject the same spot or put a lower dose in. I kept though continuing getting shots for about 3-4 months until I decided since I knew what helped to see a pain specialist. They told me though they could not give me a steroid shot due to that had 1 shot that should have been enough steroids for a whole year…I didn’t know if they were telling the truth or was only concerned with the MRI I took that I didn’t really care to, because I had 6 MRI’s up to that point, and did not care to help me further. All I know is that they said the 1st steroid shot I took was the limit for the year they said. So now im going on my 7th year, the steroid shots aren't working and im desperately seeking some kind of help or knowledge of what this could be.
Some of the things I do to help other than take pain medicine and Nyquil (w/ the pseudoephedrine); I would also take a small towel roll it up and put it under my chin and put pressure upward like I use to when I was having the downward pressure in the past and would push up with my hand, and I would also lay on a pillow having it push up on the back of my head...what I feel is that my jaw has shifted down; i don't really know how, but i hope that any of this information is helpful in someone to finding out what this could be.
*I know this is lengthy, but I wanted to give as much possible information I could hoping that someone could help.