Discussions By Condition: I cannot get a diagnosis.

20+yrs exhausted, very high CPK levels. Periods of feeling fine followed by inability to function.

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • January 18, 2014
  • 11:14 PM

I am a 41 yr old female. I have had periods of exhaustion since I was 19. For many years the periods of overwhelming tiredness were short lived and didn't have too much of an impact on my life, however as the years have passed I have gone from a very active woman to almost bed-ridden. When my symptoms began 20 years ago the focus was on a muscle-skeleton condition. I even had a muscle biopsy. I was told my muscle appeared very white but that the biopsy didn't reveal anything. The one constant in every single "bout" of exhaustion I have is an elevated CPK count. My CPK has been as high as 1,770 and has rarely been below the 300 range. At the time of this writing it is 1,571 and I can barely get up out of bed. Throughout the years, I have been diagnosed with Fibromyalgia, CFS, IBS, chronic migraines, carpel tunnel syndrome, degenerative disk disease, and most recently (within the past month) diabetes and severe narcolepsy. I was referred to and was admitted to an impatient facility for depression in June of this year. Finally after 20 years of being TOLD it was just depression (I argued with every doctor that it WAS NOT DEPRESSED, it didn't' matter they still prescribed every antidepressant ever made, I decided that I actually was depressed. My God, 20 years of begging begging for help so that I can live the life I want I finally gave in and have become depressed. I am financially stable, have a wonderful husband, and my favorite thing to do in the world is to fish bass tournaments. However I have gone from fishing every other weekend to having only fished maybe 10 days in the past year. I have to have help NOW. I have been on short term disability for depression and my psychiatrist wants me to enter a "higher" level of care but she too is concerned about my unusual blood tests, etc. My last CBC showed my CPK elevated. My blood sugar critical at 33, my potassium very low, my sodium very high., etc. My company is demanding for my return to work but I am struggling to just make it from my bed to the bathroom. I MUST GET SOME MEDICAL DIAGNOSIS BEFORE I DIE. I feel my body shutting down and every CBC I have proves more and more that something is wrong but each doctor I see sends me to a different "specialist" and still NO ONE CAN TELL ME WHAT IS WRONG WITH ME.

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2 Replies:

  • Check into polymyositis. See if you fit any of the symptoms. I think it's treated with steroids. Also if you drink lots of caffeine it can raise your levels. Not sure it would raise it that high. Search all autoimmune diseases just to see. I know how frustrating it is trying to get help from the Dr. I'm trying to get relief from chronic pain. Good luck!! God bless!!
    Anonymous 1 Replies
    • February 1, 2014
    • 06:41 AM
    • 0
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  • Your story sounds very much like mine. I have been researching my symptoms for at least 10 years, and I believe it may be Polymyositis or Dermatomyositis. There are different subtypes. Look up Myositis antibodies. There are many of them, with different sets of symptoms, but all of them have muscle pain/weakness/fatigue. I may not be able to do much, but I'll always keep searching for answers, even if I can't get a diagnosis or treatment. I will never give up and neither should you.
    Anonymous 1 Replies
    • September 20, 2014
    • 01:14 PM
    • 0
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