1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

trying to get diagnosed for M.E.

Posted , 5 users are following.

jules49
jules49

I'm sure I have M.E.  I was taken to hospital 2 months ago with suspected heart attack, all tests have come back clear. Since then i have extreme fatigue, awful aching arms, brain fog, restless legs, sleep disturbance. I haven't been back to work, cannot function properly to do household tasks. If I do any kind of exertion I'm wiped out for days. Does it sound like M.E?  Doctor makes referrels to different specialists, have long wait for appointments, it's all such a drag. I don't feel like anyones listening to me!!

 

1 like, 13 replies

13 Replies

  • Alexi
    Alexi jules49

    Posted

    I could have written this !  I was eventually diagnosed byneorologis although others are by rheumatologist. Is there an ME/CFS service in your area to ask for a referral ?
    • jules49
      jules49 Alexi

      Posted

      I don't know Alexi, how can I find out?

       

    • jules49
      jules49

      Posted

      I've found a couple! I have a doctors appointment tomorrow, I'llaskher to refer me but I don't hold out much hope...
    • jackie00198
      jackie00198 jules49

      Posted

      You can bolster your case with your doctor tomorrow if you can point to symptoms that seem 100% ME/CFS. Go to the "sovlve me/cfs initiative" website and look at symptoms listed there. If they resonate with you, print them out and show them to your doctor. We have to learn to advocate for ourselves.
  • Alexi
    Alexi jules49

    Posted

    As muscle pain is a big problem for you I'd ask to be referred to a neorologist. That's what I did, and he did loads of test to eliminate other things like M.S.  Have a look at actionforme website and me association website for loads of useful info
  • jackie00198
    jackie00198 jules49

    Posted

    Yours is such a common story, yet it makes me angry every time I hear it. Too often, doctors just don't listen to us, or tell us it's "all in our head." As a long-time sufferer of ME/CFS, here's what I recommend you do. First, get a complete blood panel, to rule out other illnesses. A GP can do this. Then, if results come back normal, go to an infectious disease doctor, or a rheumatologist, who is knowledgeable about ME/CFS. Because your symptoms sound spot-on for the illness. Go to the "solve me/cfs initiative" website. They have lots of good information. In the meantime, take it very easy. Pace yourself, and whatever you do, don't try to push through the fatigue. This can dramatically reduce chances for recovery. In my opinion, a bunch of specialists are a waste of time. You just need one good specialist knowledgeable about ME/CFS.
    • jules49
      jules49 jackie00198

      Posted

      Thank-you Jackie, that's really helpful. I've had a full blood screen done, all negative. I'm really going to push things with the doctor in the morning.
    • andrew22534
      andrew22534 jules49

      Posted

      Good luck, i agree with all on here, if you dont ttrry they wont... hard when you dont feel able to but... also remember to pace yourself and rest before you need to... even to deliberate planned rests...
  • jules49
    jules49

    Posted

    so, I've seen the doctor. I'm having a blood test tomorrow to rule out arthritis, then seeing doc next week for referral to rheumatologist. Does this mean they're taking me seriously?
    • jackie00198
      jackie00198 jules49

      Posted

      If the rheumatologist is knowledgeable in me/CFS, then yes.
  • Alexi
    Alexi jules49

    Posted

    I could have written this !  I was eventually diagnosed byneorologis although others are by rheumatologist. Is there an ME/CFS service in your area to ask for a referral ?
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.