Over-Treated, Under-Diagnosed, and Completely Alone

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I know it’s been a long time since I’ve written anything or even done anything with this blog. Recently Emily has been back and fourth with doctors and dealing with her pain. It’s recently come into question whether or not she has fibromyalgia or something else entirely. To be very honest, the question has been posed more by her and I than any doctors (because all of her doctors don’t want to figure this out or, seemingly, even want to deal with her). So, what brought this generic diagnosis into question?…

Well, fibromyalgia has a few core characteristics that seem to be universal:

  1. Tenderness at sources of pain (i.e. touching the areas of pain causes excruciating pain)
  2. Gastrointestinal issues such as I.B.S.
  3. Exercise helps in dealing with the pain
  4. Tingling and coldness in hands

Here are Emily’s symptoms:

  1. Touching the sources of pain RELIEVES the pain
  2. No changes or issues in gastrointestinal functions
  3. Exercise exasperates pains, causing extreme fatigue and increased pain during and after activity
  4. No tingling or coldness in hands (although sweaty hands happens on occasion)

Generally speaking, the most common problem people with fibromyalgia face is overall body pains, and that is the only thing we’ve recognized her having in common with this diagnosis. Her daily pain is acute and widespread. I worry about her day in and day out, but without highly involved medical attention she remains on the pill that seem to cause her more woes than anything else: Oxycodone.

Doctors have treated her like a junkie, yelled at her, belittled her, and even made her suicidal. One of the hardest parts of this for her has been finding support. There are times even I don’t like that she’s taking these pills. I’ve felt this way not due to what the pills are or what they can do, but because of how people view her when she takes them. Even her father remains unaware of what she takes, and by her own omission, knowing he would think less of her for it.

I am 27, she is 19, and we both came together in a world that hates ‘us’. Since our union we’ve found solace in being with each other and loving one another, while also facing demonizing remarks on a near weekly basis. We live in a small town that offers little more to us than her family (of whom only 1, her mother, openly supports us and understands what she is going through). Some days I want to die, and on others her willingness to live is gone; but on each of those days we find ourselves supporting each other to keep going. Without her… Without us… I hate to think about it.

 

~Tim

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