I have been dealing with issues since I was a child. I have dealt with severe migraines, that the doctors diagnosed me with menstrual migraines. Doesn’t make sense now since I have not had a period since November of 2010. Still have the migraines, although, much more severe and can last for weeks or even months. I also have limited motion of my arms and neck.

I fell on the ice, Christmas Eve of 2004, while carrying my 2 year old son. I fell right on the arm I broke when I was 7. That arm was set wrong. From then on my abilities with that arm slowly faded. Anything I do with that arm or hand causes severe pain with added vomiting from the pain. At the worst I can throw up every 10 minutes for hours. I have lesions in my throat from vomiting so much. Since I have been using my left arm more, I have severe pain when I use my left arm for the last 15ish years.

I have gone to many neurologists, orthopedics, 2 arm specialists and about 4 or 5 pain management doctors. I’ve been seeking help for over 18 years. Still no definitive diagnoses. In the beginning I would leave the doctor in tears because they would say it’s all in my head.

I have many other symptoms. Severe pain when I have to hold my own head up. I have to sit with my head supported or I am in severe pain. Which then leads into the debilitating migraines. It literally feels like my head will explode from the pressure. My pain alone can get so bad that I can vomit without having a migraine. But only if it is from my waste up, I broke my ankle and didn’t vomit from pain. I need to mention the severe neck pain I have on a daily basis. I haven’t been pain free for over 18 years, I’m not talking aches, I mean debilitating pain where I have to listen closely to my body. If my body is screaming, whether it’s only been 2 or 3 minutes, I must stop what I’m doing. Otherwise I pay dearly. If I’m pushing it, then I don’t have the help I need. I depend a lot on others. Most times people grow tired of you needing help all the time. So, there’s that too.

I also experience muscle jerking which is very painful and constant. I don’t get a break. The movement started about November 2006. That started at the elbow of the deformed arm and started out very slow. Looked like there was some creature in there moving around. It has gotten much faster and has spread up and down the arm. It can also happen in my left arm and both my legs when I’ve “overdone” it. The movement is worse at rest and when it looks like it has stopped it hurts worse. It’s like it’s tightening up really tight. If I lay my fingers on my right arm, pretty much anywhere on the arm or I rest that elbow on anything the movement intensifies and gets faster without any pressure. Just simply touching it.

I get all over body shakes when I’ve “overdone” it. When I get these body shakes I have to sit or lay down so I don’t fall down. My overdoing it is, doing something more than a couple minutes or something I shouldn’t do. Believe me when I say, if I do something I know I shouldn’t do, I pay big time. Sometimes I’ll “pay” the rest of the day. Which means I can’t do anything else for the rest of the day. Most times it affects me for days. When I really push it, it can take me weeks and sometimes months to recover.

I also have balance, dizziness and I stumble when I walk. Almost like I’m tripping myself.

Repetitive movements, not supporting head, sitting for more than 20-30 minutes depending on if I can support my head, doing anything above my head, looking up for longer than a few seconds, using scissors, writing longer than a few minutes, carrying anything over about 3 pounds, doing anything holding my arms out from my body are the worse things I can do. These acts cause the most severe pain.

Two more things. At one of my appointments with a neurologist he performed a full body reflex test. After that test the doctor sent me out to the waiting room to get blood work done. Before I left the examination room I started shaking uncontrollably from head to toe. They didn’t say anything about it. Also I felt like I had been hit by a truck. My body hurt so bad after that exam and the only thing he did different than any other doctor was the full body reflex test. It took me about a week or more to recover. I made the doctor aware of what happened at my next appointment and he said that’s impossible. A reflex test can’t cause that. I feel like the doctors are not looking at all my symptoms.

I have been dealing with this for so long and doctors will do one or 2 tests and they come back normal, they give up. I feel like if I don’t figure out what’s going on soon then I’m going to end up in a wheelchair soon.