I’ve finally found out what’s wrong with me!

A couple of days ago I had no idea what was wrong with me. In addition to EUPD, I’ve been experiencing a huge list of physical symptoms that nobody has been able to get to the bottom of for nearly two years. I did test after test, but they always came up clear. I’ve listed some of the diagnostic tests I underwent below:

  • 24 hour ECG monitoring
  • Echocardiogram
  • Countless bloods for:
    • kidney function,
    • rheumatoid arthritis,
    • diabetes,
    • hypothyroidism,
    • liver function,
    • IBD,
    • And other ones I can’t even remember
  • X-ray of hips
  • Ultrasound of joints
  • Intrusive examinations (let’s just say my GP now knows me very thoroughly)
  • Samples of pretty much everything that the body produces
  • Rheumatology and physiotherapy appointments where I was diagnosed with a different condition every time
  • Two rounds of physiotherapy

As each test came back clear, it became more frustrating than relieving. Clearly something was wrong- almost every single body system was affected, yet me and my GP still had no idea what was going on. The list of prescription medications was growing, but my symptoms weren’t resolving, instead, more symptoms were popping up to join in with the party. Whilst my main doctor never accused me of fabricating my illness, there were plenty others who made it clear that they thought of me as a ‘problem patient’.

Eventually, I came across Myalgic Encephalopathy (aka chronic fatigue syndrome) and I couldn’t believe how well it fit! As a quick intro, ME is a debilitating and poorly understood condition without any known cure. There’s a huge list of symptoms, but the main ones are ‘severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration’. (I nicked the symptoms list from http://www.meassociation.org.uk/about/what-is-mecfs/ . Take a quick look if you’re interested.)

I immediately booked a doctor’s appointment. Ironically, I subsequently nearly missed said doctors appointment because I was too exhausted to get out of bed. Then once I was at the appointment, I completely forgot all the research I had done and could barely get out a coherent sentence. Eventually, my lovely GP managed to piece together what I was blabbering on about.  As my GP went down the diagnostic criteria, I ticked nearly every single box. After nearly two years, my symptoms were finally diagnosed.

Instead of sadness at being diagnosed with an incurable condition, I felt an amazing sense of relief. I wanted to find all the doctors who didn’t believe me, stick out my tongue, and do a silly dance (preferably one that involves subtlety sticking up the middle finger).

My only regret is that I didn’t find out about CFS/ME sooner. I had no idea that the condition was recognised by the World Health Organisation and so had never looked into it. Now, I wish I knew about it a year ago; I would have avoided so much mental anguish if I had just known what was wrong with me. I can’t imagine how much more difficult the situation would have been if I lived in a country without free healthcare.

The public awareness of CFS/ME needs to be drastically increased. Hopefully, we can prevent other people like me bouncing around from doctor to doctor and from test to test.

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