amber7helen

I live in Norfolk, in England UK

Thanks so much for all your replies. I am really glad I have found this site, because whether or not what I have is the same condition, it is certainly some simlar symptoms so its nice to be able to discuss it with people who understand. Please can you tell me what a "poor mans tilt" is?? I read quite a bit on this site yesterday and many of the posts in the forum. I know what you mean (sorry cant remember which one of you has the CFS ) about the doctors. It seems if you have any condition they see you as exempt from getting anything else! Yes, my boyfriend is lovely and he is keeping me sane at the moment! We met on my CFS site a year ago, met up and fell in love. We now live together and its great that he knows exactly what im going through with the CFS, and understands my frustrations with the lack of tests. He has told me he will support me all the way in trying to get to the bottom of my unsteadiness and dizziness. His support most definitely helps with all this. Its great to meet you all, and thanks again for your advice. We hope to get that BP monitor within the week so i will let you know how it goes. Love from Amber xxx

hello again and thank you for your replies. I am not positive that this is the condition that I have, but am almost certain that whatever i have is somewhere in this area. About a year ago i stumbled across Chiari and much of that rang familiar with me too, and so now finding this and reading the connection with Chiari it just frustrates me so much that i cant get adequate tests to at least rule these things out if it isnt that, in order to find out what it is. I have spent quite a bit of time reading personal stories and previous posts on this site and have found some of it to be very familar while other parts not so much. The main thing that puts doubt in my mind is that i feel the sensations more in my head and neck area than chest area. However, many other symptoms are familiar and i have always strongly believed that it is nervous-system related and desperately want tests to find out what is going on, as "being patient" has done me no good for the last 12 years! I didnt realise until after i posted that this is an American site, so should have used the term "CFS" or "CFIDS"rather than M.E. It is the same condition but known more often as M.E here. Again, many thanks for your responses. I have decided to invest in a BP monitor to at least get a better idea whether this is the likely condition or not. I really do appreciate your help. Thanks, love from Amber xxx

Hi everyone, I have just joined this site and am hoping some of you will be able to help me. I suffer with unsteadiness on a daily, almost constant basis. It isnt too bad when walking but sitting or standing i feel as if i am constantly moving, it is a scary sensation. I am at my most comfortable laying down but even then sometimes it is still uncomfortable. I have had M.E for 12 years, diagnosed 11 years ago, but my most debilitating symptoms, the ones that affect my day to day life the most, are unsteadiness and dizziness. If i stand for too long i can end up passing out. I used to pass out about 4/5 times a week when i was first ill but this has lessened greatly mainly due to altering my life so much. I lay on a stack of cushions in the living room as even being on a sofa can cause me to feel unsteady. Social events are traumatic, and meals out with my family are a constant source of anxiety for me. I am unable to work but do run a support group for M.E sufferers with the little energy i have. Each time i go to my doctor i am sent away and told to "be patient". I am incredibly frustrated and am trying desperately to find out exactly what is going on with my body. I dont doubt i have M.E but feel this symptom is being put in that bracket by my doctor without looking into it further. I have already asked for an MRI scan because i am convinced something is going on here, but was turned down due to NHS fund shortages. I am sorry for gabbling on like this , but when i came across this condition it seemed to ring true with me. I wondered if any of you could tell me how to go about getting the right tests done? I am worried my doc is going to start looking at me as a hypochondriac soon but they seem to be doing nothing and patince has never been my strong point, let alone 12 years of it! I am usually a very positive person but frustration is sending me loopy right now (my poor boyfriend nods in agreement! ) Please, any advice would be really welcome. Many thanks, Amber xxx