Firstly got ill in December with muscle weakness-completely unable to use right hand due to pins and needles/numbness and tiredness. Was fine in January but have now  been ill again and off work since Feb. Symptoms include extreme  tiredness, dizziness, headaches, muscle weakness, neck pain and generally aching. Can't drive as I can't concentrate and makes me dizzy. Even a shower can make me feel exhausted! MRI scans and blood tests all fine so back to square one :(. Doctors making me feel as if it's all in my head!. Seen a neurologist who told me it is fine to drive and to just go back to my normal routine (if I could I would!) So frustrating not being able to get a diagnosis or help from anyone!! 

4 Replies

  • Sorry to hear that you are having such a bad time. It sounds similar to ME but it's up to your GP to say so or to refer you to someone who can diagnose you. ME is diagnosed by eliminating other conditions and this seems to be with what is happening with you. I would have thought that the Neurologist could have picked it up. People who get these symptoms tend to under state their symptoms when describing them, as they see the disbelief on people's faces and feel that they mustn't make a fuss about 'nothing' or that they must try harder to cope or over come how they feel.

    I will message you privately. There are groups that you can look up such as Action for ME and 25% ME Group and MESiG (on Facebook - ME Support in Glamorgan). Look up the NICE Guidelines about CFS/ME to see how it is supposed to be diagnosed in the UK. 

    There are people who understand and will support you but it is not always an easy path. I suffered from Chronic Fatigue a few years ago and was ill for a long period. I did not have the full-blown ME however as I didn't have a full range of symptoms. Many people suffer from CFS connected with other health conditions but ME has more symptoms. I just felt totally exhausted and couldn't do much more than lie down.

    Keep in touch and let us know how you get on.


  • Sorry, can't send you a private message as you have a hidden ID. You can put any ID without revealing your name or location. Then I could message you privately.

  • The key symptom that indicates ME rather than one of the many other illnesses that causes extreme  fatigue is PEM (Post Exertional Malaise) in other words after you do something physical or mental your illness gets worse. Often ME is a result of an initial viral infection. If you find symptoms worsen when you stand have a look at POTS (Postural Tachycardia Syndrome) it can cause extreme fatigue and it is much easier to do something about. Don't forget it is hard for doctors when they don't know what to do, it is a failure for them, You will need to monitor your symptomes carefully to try to give  them somethign to go on. 

  • sounds very much like what my daughter is experiencing, and we are looking into B12 deficiency / pernicious anaemia .... have you been tested for 'active' B12 ?

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