Hi there. I am a 42 year old mother if 4 daughters. I have never posted on a forum but am coming up on a year of significant testing and a 12 year history of what I believe to be symptoms of CFS and am ready to pull my hair out. I have been diagnosed with probable bipolar disorder, depression, anxiety and probable fibromyalgia. I believe my mental health diagnoses have caused me to be dismissed at many levels of my pursuit of an answer.
A year ago I experienced an unusual episode. It started with an unbearable pain in my neck. I was discharged from the ER with muscle relaxers. Those if course did not work. While waiting to get picked up for a doctor appointment, my vision went blurry and my left side went totally weak and I couldn't keep my eyes open. I called an ambulance and within 30 minutes the symptoms had subsided and I was left just feeling extremely tired and like I had the flu. No tests were done at the time.
I had to stop working and continued to have strange episodes while seeing many specialists and having many many tests. ALL of my tests come back negative yet I still have physical symptoms. I was left with gait and balance problems as well as significant hand, wrist and arm weakness. There are many other odd symptoms (like my hair and nails stopped growing and extreme reactions to chemicals). Too many to list.
Because I have a long history if seeking medical help, more recent strange and unrelated symptoms from literally head to toe and my mental health diagnoses I have found it challenging to get someone to listen to me. I was turned away from the emergency room when my foot suddenly swelled and turned purple. The nurses couldn't find a pulse on my foot and the doc said it looked like a tan line and he couldn't give me medication. Having experiences like this (and I've had many) makes you start to doubt yourself and only adds to the problem.
I have applied for disability and currently on my first appeal. I don't know how to go about getting someone to listen to my theory about what I have because doctors don't like to hear your own ideas. You just end up sounding like a hypochondriac.
I've chosen to write on this site because I know there's probably a vast community of people going through the same things. Not necessarily the same exact symptoms but going through feeling like you're crazy and that doctors just think you need to change your medication and you'll be fine (as mine does)
This is just a minuscule shortened version of my story but nonetheless, it helps to have a place to get it out.