M.E for over 25 years — Scope | Disability forum
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M.E for over 25 years

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sandie
sandie Community member Posts: 1 Listener
edited January 2017 in Disability rights and campaigning
I have had M.E for over 25 years. Bedbound for the first two but I never reached full health again. I recently had a really bad relapse...the worst for a long time but I'm feeling better slowly. Hope to 'meet' other sufferers on here.
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  • bam
    bam Community member Posts: 326 Pioneering
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    Hello@sandie how are you? How were your holidays? Welcome to the community Sandie my name is Bam
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  • anaqi
    anaqi Community member Posts: 52 Courageous
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    HI Sandie!  

    Sorry you've been ill for so long.  This might sound like a weird questions but are you double jointed or hypermobile?  

    I was diagnosed with ME in 1990 when I was 15 year old but the doctors got it wrong.  Three years ago I was diagnosed with Ehlers Danlos Syndrome - Hypermobile type and Postural Orthostatic Tachycardia Syndrome.  I also have Sjogren's syndrome and histamine intolerance (possible mast cell activation disorder).  It's common for people with EDS to be misdiagnosed with ME or Fibromyalgia

    I was treated pretty badly by doctors when I had an ME diagnosis.  I was denied treatment but since being correctly diagnosed with EDS I now have much better support and my issues are being taken seriously.

    I hope you recover from your relapse soon.   


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  • Zec Richardson
    Zec Richardson Community member Posts: 154 Pioneering
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    Hi Sandie
    I was diagnosed in 1997 after being admitted to cardiac care with Pericarditis 
    I was very u well but managed to return to work in 2008 but after losing my mobility due to knee problems and ending up with CRPS, the ME has flared up again in the last few years.

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