Hi there -Im Nicky & new here but have been reading plenty and thought it time I said hello !
Ive had ME & Fibro for about 7 years now and always struggled with their symptoms and associated conditions , especially so as both are not always taken seriously by the medical proffession and general public alike . The ME developed after having Epstein Barr virus and the Fibro came more recently after my dear mum passed away . I have four teenage children and a husband who , although accepting of how I am , finds it difficult to offer sympathetic support and advice . To be honest my dogs are more attentive and understanding most days !!
I have come to this forum as more recently my problems have become so much worse that I have begun to feel that there may be something more going on . My dear friend has MS and has suggested that so many of my new sypmtoms are the same as hers that I should get checked out . I know from experience that the overlap between ME & MS exists , so would welcome any advice that might distinguish one from the other . My fatigue has become extremely debilitating and my walking and co-ordiation extremely poor - my legs often feel as though they belong to someone else and I find mself walking very strangely these days - staggering and stumbling . Muscle pain has increased so much so that I find it hard to get out of bed in the morning , and then when I do I immediately start to feel extremely ill - very fatigued , in pain and so shaky with confused thinking and no co-ordination . My eyes are constantly blurry and my vision changes depending on the time of day , the weather and how bright the light is , inside or out . I often feel very spaced out and just not with it - very "floaty " and like im looking out from someones elses body - a very scary feeling that makes me panic . There is so much more , but for now this is the bulk of the problem outside of the usual ME & Fibro symptoms . Also afraid that if I ramble on too much more no-one will bother to read anyway .
I feel so frustrated and worried by all this right now I just want some answers . My main problem is the lack of support from my GP practice and the constant battle to get to see someone whose been there throughout my current problems with ME /Fibro . The last time I went and tried to explain my worries and new problems I was given a prescription for Ibuprofen gel - ohhh how I wish that would solve all this pain and struggle . He was a new doctor and had obviously not bothered to listen or read my notes . Others simply attribute anything new , or , even the whole illness to stress and anxiety or depression .!! Depression is not the primary illness but comes as a result of everything else … unfortunately its often easiest to see it in the reverse !!
I have taken much of the advice given on here and written down all that is new and worrying me . Tomorrow I am ringing my surgery and going to insist on seeing someone senior in the practice as I want some answers as to what could be causing me to feel this ill . I seem to have had about three memorable episodes of feeling like Im going totallu crazy from feeling so unwell like this . I must stress that this is so much more than I have ever felt in the past - more than my normal (but changeable!) ME problems that I literally feel like Im dying !! Epstein Barr is still present in my blood tests yet they seem to dismiss it , also my white cell count is often very low too - anyone any ideas if these things can cause you to feel so unwell ??
Hope I havent moaned too much … and do feel somewhat easier now I have said whats on my mind . You all seem so understanding and knowledgeable that this seemd like an excellent place to raise my concerns . Not sure where all this is going right now , feel like Im in no-mans land with very little help at hand and a struggle ahead to get it investigated by my GP . Fingers crossed for some helpful advice . Thanks for reading this far!.