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Can anyone tell me their symptoms/how they were diagnosed

Posted , 6 users are following.

paige21291
paige21291

Can anyone tell me their symptoms/how they were diagnosed?would be really helpful

Thanks 

Paige

0 likes, 11 replies

11 Replies

  • andrew22534
    andrew22534 paige21291

    Posted

    Extreme exhaustion, Irritable bowel flare ups, Muscle pain - as though I had been training really hard (and that would be like doing 10 times 300m with jog 100m recovery all at 30second pace) muscle twitches, poor sleep day after any exertion being really sore and tired and achy frequent sore throat effect ear ache effects (now comes as a precursor) chesty feeling, restless legs, especially at night. jumpy at noise, distracted by movement, bright lights have an effect, Poor self temperature regulation really poor concentration...….

      diagnosed by elimination of other possible - except lyme - was never tested for lyme disease, but taking amino acid supplement Q10 at a higher does seem to help which suggests ME rather than Lyme 

  • charlie19
    charlie19 paige21291

    Posted

    Yet to be diagnosed. I am into my 3rd month of symptoms though. I will say fatigue of some sort has only been a feature of the past six weeks....especially the past 2 weeks....no time I know but the present fatigue is overwhelming. 

    Initial symptoms were super crazy tinnitus, followed by vertigo, then tingling on scalp, face and extremities. Then leg fatigue with muscle cramps and soreness and twitches. Headaches followed. Recent weeks have seen sore upper torso with horrible chest pains. All of the above symptoms still exist. All other conditions have been ruled out based on clinical examinations, MRIs, MRAs and blood tests. This pattern I know does not fit the usual CFS pattern....but what does? 

  • debbie66909
    debbie66909 paige21291

    Posted

    Super painful sore throat

    Intense pain in roof of mouth.

    Fatigue beyond explanation

    Something like shock waves or mini seizure going through my body.  Tingle like feeling that accelerated then ceases

    Numbness or extreme cold in hands and feet

    Brain fog

    Burning muscle pain

    • debbie66909
      debbie66909

      Posted

      Forgot to mention dry eye or eyes!
    • paige21291
      paige21291 debbie66909

      Posted

      Are you more prone to infections with CFS? Is this something you or someone else has experienced?
  • sylvia13942
    sylvia13942 paige21291

    Posted

    Hey Paige,

    How are you doing? Do you still get the queasiness?

    I don't have a diagnosis of CFS yet, but am into my third month with this weird stuff. As I am experiencing strange fatigue and general weakness that isn't refreshed by sleep, and my initial symptoms 10 weeks ago were virus-like (? Not even sure what though) I have come to think this is a post-viral fatigue situation for me at the moment.

    My initial symptoms were:

    mild but constant nagging headache round right eye which came on/got worse if I did anything!

    Bouts of nausea, alternating with ravenous hunger.

    Heart palpitations

    Shakiness and weakness (not anxiety. This felt like the shakiness you get when your body is pushed to its limits)

    Malaise (like the day you're coming down with flu feeling)

    Some passing GI symptoms for a few days at week 4 (gone now fingers crossed.)

    Sudden caffeine and alcohol intolerance ....even the tiniest amount.

    Clumsiness and hard to focus or concentrate.

    Weariness not relieved by sleep.

    Needing to sleep longer.

    Waking with pain and stiffness just above sacro-iliac joint on left side. (my bed has never given me trouble and is wonderfully comfortable by the way.)

    Emotional -like crying sometimes for no apparent reason. No history of depression/anxiety. Often felt a little better if I cried.

    These symptoms are not as dramatic now. But the fatigue lingers and if I push things (paint a kitchen wall or go for a proper walk) I get the queasiness almost as a warning. It seems like my body's response to an exhaustion I find hard to recognise and admit.

    But I have not caught any other infection in the meantime. Mind you, I don't go out where there are many people.

    All my checks with the doctor came up "normal" Had full bloodwork. He thought it had to be a virus. But because of constant headache has referred me to a neurologist.

    That is laughable. My appointment is for 24 September!

    Still have a sharp sense of humour. Told the hospital receptionist they could cut a corner there and just call the funeral director ! And give the neurologist some peace! LOL

    It doesn't look like I will even get a "post viral fatigue" diagnosis, until the end of September. I have to figure this out myself.

    • charcey97
      charcey97 sylvia13942

      Posted

      Oh my goodness, Sylvia! Your symptoms are almost spot on with mine. I haven't been diagnosed yet either, but it has caused me huge anxiety in the last few months. I've had myself convinced I'm dying of a terrible neuromuscular disease. Thanks, Google! I appreciate your post. It alleviated some worry.

  • miller.jones
    miller.jones paige21291

    Posted

    I do not see how it really matters about others symptoms it should only matter what you are feeling and present this information to your doctor.

     

    • charcey97
      charcey97 miller.jones

      Posted

      This forum exists so that people can talk about their symptoms and not feel alone or feel crazy. It,also, helps to arm you with questions that you may not have thought to ask simply because you were able to speak with someone else who has gone through the same thing or nearly the same thing. In addition, depending on insurance plans and such, not everyone has the luxury of having a skilled intelligent physician on their case who buys into CFS. So, speaking with others about symptoms, testing, or whatever may be, might tip the scales in their favor by helping them to be better informed and know what to ask for.  
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