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"mystery" illness making me feel like I'm going mad. Could this be ME? Thank you for any advice!

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lucyK123
lucyK123

Hello,

I hope you don't mind me posting here as I have not been officially diagnosed with ME but I have no idea what is wrong with me and desperate to try and get to the bottom of what is causing my illness. My Dr's keep telling me I'm just tired/stressed/caught virus etc but I'm wandering whether this can be ME. For the past two and half years (perhaps longer) I have had bouts of flu without a fever where I literally have to take to my bed and sometimes cannot get up again for over a week. This started by happening every so often so I wasn't too alarmed until I noticed it was happening more and more frequently and I have now had 9 episodes since July. I am able to function normally in-between bouts of these episodes, although I am tired but not in the debilitating way I am when I'm hit by this illness. But if I do too much then I get sick. It's always the same symptoms - starts off feeling slightly dizzy, mild sore throat and voice goes faint and then wham, it's like the energy in my whole body and brain had been completely zapped and I literally have to lie down immediately. I get achey legs and joints, sometimes bad headaches, sensitive to light.. basically feels like i have flu but without the fever or cough. I have had blood tests for everything under the sun and the only thing that has come up is slightly low platelets and a slight rise in anti smooth muscle, which I'm being retested for in March. My doctor surgery is rubbish and I'm in the process of trying to change to a new practise but I just feel like - or am being made to feel like -I'm wasting everyone's time. It's playing havoc with my life, I work freelance and keep having to turn down jobs, I'm less and less able to do things with the kids and my partner is supportive but it's putting such a strain on us. Is there anywhere independent of my GP I could go to get a diagnosis, as when I have mentioned it to any doctors I've seen they've been very dismissive about it. Any advice would be so much appreciated! Thank you

0 likes, 7 replies

7 Replies

  • jackie00198
    jackie00198 lucyK123

    Posted

    From your post, it does sound like you might have ME/CFS. A core symptom of this illness is post-exertional malaise (PEM), which means that after you do an activity, you can get fatigued, way beyond normal. If we operate outside of our energy envelope, we can get sick. Other red flags in your post is the sore throat, achey legs and joints, light sensitivity. Go to the "solve me/cfs initiative" website and see if the symptoms resonate with you. What country do you live in? I know of some excellent doctors in the U.S. You might want to see a specialist, like an infectious disease doctor or rheumatologist, to get diagnosed. GP's are not very knowledgeable aboue ME/CFS. It is the rule, rather than the exception, that doctors are dismissive of us and say it's all in our head.

    • lucyK123
      lucyK123 jackie00198

      Posted

      Hi Jackie,

      Many thsnks for getting back to me. I’m based in the UK, in London. What you’re saying makes a lot of sense to me as I’ve noticed these episodes have been after either working too hard or emotionally stressful situations. I wasn’t sure re ME as, although I seem to be permanently tired, I am still able to function normally when I don’t have this ‘flu’. 

      Thank you for the advice seeing an infectious disease specialist. I didn’t think of that but I will seek one out

      Many thsnks

      Lucy 

    • jackie00198
      jackie00198 lucyK123

      Posted

      ME/CFS is a spectrum disease. Some people are still able to work full-time, some can only work part-time, some are housebound, like me, and some are bedridden. And we can have a variety of symptoms in addition to the fatigue and PEM. 
  • janet71271
    janet71271 lucyK123

    Posted

    Hi Lucy

    You need to ask your GP for a referral to an endocrinologist. That is who I was referee to. I had to ask as I was just being fobbed off and getting nowhere. I used to live near Heathrow so my local was Ashford hospital. But if you live in London , there are plenty of resources. Kings college has an ME /CFS specialty. Granted it has been more psychiatric based in the past which was very wrong. ME/CFS is taken more seriously now as a real physical disease. Speak your GP and ask for a referral for a second opinion . good luck and take care X

    • janet71271
      janet71271

      Posted

      That should be referred not referee !
  • lucyK123
    lucyK123

    Posted

    Thank you so much for this. I will definitely ask for a referral.

    Thank you!

    Lucy 

    • janet71271
      janet71271 lucyK123

      Posted

      You are welcome. GPs tend to not be too well informed on the whole. And you have the right to request a second opinion. You can't, and shouldn't be expected to carry on like you are. I hope you get some answers before too long .

      Take care x

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