First of all - as my first post - like to say thank you to those on this site, I appreciate all of the help that everyone gives, good luck to all who are struggling.
My problem has been going on for about 5 years. I got sick and a swollen liver. It took about 10 doctors who told me the ridiculous fatigue and joint pain was in my head until I got a doctor who tested me for epstein barr and i was through the roof on that and he told me "You have epstein barr or Chronic Fatigue and there isn't much we can do about it".
I really didn't understand that too much and didn't change my lifestyle very much. Continued to treat my body like crape (alcohol) until about 6 months ago, things started getting really bad and i have been good to myself but i fear it may be too late. It started with ridiculous anxiety - i have never had anything like this in my life. I got some meds for that problem but it was after the weakness in the rectal area started. I have muscle twitches non-stop across my body, increasing muscle weakness with a lot of pain. I have had 2 episodes of ridiculous pain in muscles about a month after I started being good to the body, ( the rectal area and the throat ) within a month of each other. The pain was awful and lasted about 5 days, I didn't feel sick just a lot of pain in the muscle. The pain then subsided and the feeling was the muscles went slack - the only way I can explain it is it felt like a lot of muscle died, this has continued but moves through both the areas and the weakness just progresses. I now have almost no control of the anus, I have to wear pads because of this. My tongue and swallowing are very weak and I have pain in the lower jaw and through the tongue. I have almost all the symptoms of CFIDS but I haven't seen muscle loss or control of muscle being lost as one of them.
I have been to almost every conceivable doctor. The neuro says the nerves work fine. The rheumy says that I show no inflammation and that they aren't sure what is wrong, no connective tissue disease. The metabolic panels are fine. I have even been to Mayo in Rochester MN and they didn't figure it out. I am scared to death as this pain and muscle strength loss continues to migrate, It is now in my arms and hands and through my chest. It has made my breathing much harder and it is moving very fast through my body and I am scared and lost. The docs don't really seem concerned but of course they don't have to spend time in someone who is suffering from afflictions like this bodies.
Any thoughts or help would be appreciated. I have also tried chiropracty, herbs and accupuncture with no success.