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I think I may have CFS but don't know what to do

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Snowgirl
Snowgirl

In August of 2012 I had a bad cold, then three weeks later a chest infection and then more chest infections every month until I ended up with pneumonia in February 2013. I was off work a couple of times with the chest infections and then seven weeks with pneumonia.  Since then every 4-6 weeks for 12 months I would get a severe flu. Blood tests showed I had raised white cell count, and still do.  While all of that was happening I was exhausted, managed to get to work most of the time and just crawl to bed as soon as I could.  I have been able to avoid the flu for the past 10 weeks but I am still exhausted.  I have periods of breathlessness, since having pneumonia, that can be quite scary and come on at any time.  I was tested for asthma and that's not the cause. In the past few weeks my neck, shoulders, knees, hips and hands have been painfull, especially my hands.  I moved house recently and had to change GP, I had a great relationship with my former GP but my new one only gives you five minutes and seems convinced it's all In my head but I'm starting to wonder if I might have ME/CFS.  Not really sure what to do next.

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3 Replies

  • jackie00198
    jackie00198 Snowgirl

    Posted

    Well, you could have ME/CFS, but you've had so much stuff going on, it's hard to know from your post. So here's my suggestion. Go to someone familiar with CFS/ME. This is critical, because doctors not in the know can brush off your concerns. Happened to me. Very annoying. You need to get a full battery of blood tests to rule out other stuff. There is no marker for CFS/ME--rather, it's a diagnosis of exclusion. So if your tests come back negative, except for high white blood cell count, and you continue having unrelenting fatigue and pain, you might very well have CFS/ME. By the way, for a long time I had "air hunger" with my illness, which is not that uncommon with CFS/ME.  Don't know if this is what you're experiencing, or if your breathlessness is pneumonia related. By the way, whatever you do, don't push yourself. I did that, and it made my illness a whole lot worse.
  • sally_14743
    sally_14743 Snowgirl

    Posted

    Ask to be referred to a specialist with regards to your lungs. After pneumonia you are left with scars on your lungs. If your lungs are not working 100 percent you will not be getting enough oxygen which will make you fatigued. CFS is your last diagnosis after all others have been investigated. Asthma is tricky a nurse should do a peak meter reading  when you blow into the long cylinder. Now you may have a high reading good puff that doesn't necessary mean you don't have asthma .then she should make you take two puffs of a reliever inhaler and get you to test your peak flow again . If your peak flow has improved you have asthma even. If your reading was good first time .... 

    Hope that helps ...

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