Back to Square One

     Ten years ago I found myself struggling from day to day, with pain everywhere that did nothing but increase every day.  After finding myself curled up on the floor, unable to even change out of my uniform, it was time to go to the ER.  I knew before the ER visit that something was wrong, but figured if I ignored it, it would go away on its own.  It didn't.  It took a little over 3 months, bi-weekly blood tests from my primary doctor, with whom wouldn't believe anything was wrong in the first place except at first my labs indicated an infection, he told me I was "fine" when the last tests came up "normal."  I refused to buy that explanation because I was far from normal.  Within 2 months of that visit to him, I saw 3 rheumatologists that he referred me to and all 3, after looking over 3 months of labs, some poking and prodding, told me I had fibromyalgia.  Two told me in essence that yes, I have FMS, but there isn't anything I can do, so just suck it up.  It had no cure and no known treatments.  The third explained to me what FMS was, ordered labs of his own on a hunch, and began to try to treat my disease.  I kept the third one as my rheumatologist because he not only explained to me what FMS was, but that there was at least some hope through treatment--instead of living off of pain medication.  Since then, I've had Lyme Disease 9 times (7 confirmed) among other random viruses.  But no matter what symptoms showed up when I didn't have Lyme Disease, he stuck to his original diagnosis--I had Fibromyalgia.  Sure he runs an ANA (one of several Lupus tests), thyroid tests, and RF (rheumatoid factor--something that when a positive result comes up, Rheumatoid Arthritis is the likely culprit), and other basic tests.  Nothing to disprove his Fibromyalgia diagnosis. 
       Over the last 2 years I've seen my health decline.  It has declined even faster over the past few months.  Some days I can barely move my joints are so stiff and swollen.  Some days I literally sleep almost all day.  I've noticed that my muscles tremble, my lower back and neck are in near constant pain.  Anytime I bring new symptoms up to him or my primary doctor (not the same one I had.. I had to go through 4 to find one who believes Fibromyalgia IS a real disease) I'm told that it's just Fibromyalgia and I'm given a new prescription to "help" it.  Except I know this isn't FMS.  What it is, I don't know.. but I know it's not. 
       I had to take my 3rd medical withdrawal in a row from school, but this time it's a medical leave of absence to find out what my body is fighting off.  My primary doctor ordered basic labs (Lyme was omitted because after so many times, it would only show up positive) and told me I have "just a virus... plenty of rest, plenty of fluids, and it'll go away."  Yet I've only gotten worse.  I'm still running a low-grade fever after 4 months (sometimes it climbs for a day or two, but mostly it remains low grade).  It took me over 3 weeks to get my rings off my finger my joints were so swollen.  And the pain is worse than ever.  So I decided to start with my neurologist.  I learned in an online group that neurologists are among a select few specialists who can treat FMS, so I figured it was a good place to start.  After reviewing 2 years worth of labs, a basic neurological physical (which I failed miserably... apparently I can't stand up with my eyes closed), and listening to my list of symptoms, he admitted that this was something that was out of his league.  So he sent me to an Infectious Disease specialist.  The ID specialist did the same thing my neurologist did, but drew almost 14 vials of blood for dozens of tests.  He's starting with tick-born diseases and all kinds of vitamin, hormone, and chemical levels to either find an answer or get an idea as to where to at least start looking.  I'm still waiting for those results. 
      Then today comes my rheumatologist's check up.  He asked if I had ever seen an ID before and I told him who I was seeing and what he was doing.  He was more than a bit pissed.  He has no idea what the ID dr was treating me for (since plaquenil--a medication that is also used to treat Lupus, RA, and other painful autoimmune disorders) and was angry that I was put on a stronger pain medication temporarily.  But he put me back on Topamax to help treat the migraine symptoms, depression, and hopefully the excessive weight I've put on in the last 18 months.  Then he told me all I had was FMS and he'll see me in 5--FIVE months!  I'm hoping to have answers, treatments that work, and be able to return to school at the end of August.  His receptionist didn't care.  He didn't care.  And I left his office the same way I left my primary doctor's office all those years ago--very sick, no answers, and dealing with doctors who not only put their egos ahead of their patients, but are afraid to admit even in the slightest way that they were wrong.  How do you fight something when you don't even know what you're fighting? 
       So now I'm back to square one.  Knowing something is wrong, knowing I'm sick, but have no clue what to do, or how to go about it.  And relying on doctors to put their egos aside and figure it out.