amber7helen Posted March 17, 2005 Report Share Posted March 17, 2005 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 Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 17, 2005 Report Share Posted March 17, 2005 Hi Amber7! Welcome.I know the feeling of wanting so much to "get better" and wanting it just as much for me as for the doctor! I am sure it has been a difficult 12 years.There are tons of suggestions of things to read listed from DINET on the first page before you enter the forum discussion. Take some time and go through those. You will also find many helpful things in previous threads so do a search too.My best suggestion for understanding what is happening is to get to a good testing center and have a full autonomic nervous system workup. There is no substitute for an accurate diagnosis and you need the right tools to get the best answers!best regards, tearose Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 17, 2005 Report Share Posted March 17, 2005 Amber, here are links to the pages that explain testing:http://www.dinet.org/how_is_pots_detected.htmhttp://cpmcnet.columbia.edu/dept/syncope/tiltfaq.htmlNina Quote Link to comment Share on other sites More sharing options...
yogini Posted March 17, 2005 Report Share Posted March 17, 2005 I am not familiar with ME. The others have given you good advice. I think even before going for testing, though, you could take your pulse for a few days, at different times in the day, while lying down, sitting and standing. If you can get an inexpensive blood pressure monitor and take your blood pressure, that would help too. Write these numbers down, and if your heart rate increases a lot or your BP noticably drops while standing, it would indicate you may have dysautonomia. Quote Link to comment Share on other sites More sharing options...
amber7helen Posted March 17, 2005 Author Report Share Posted March 17, 2005 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 Quote Link to comment Share on other sites More sharing options...
yogini Posted March 17, 2005 Report Share Posted March 17, 2005 If you are from the UK, you might want to do a search on the forum. I there are a few other posters who could point you to the right doctors. Good luck!-Rita Quote Link to comment Share on other sites More sharing options...
lalalisa Posted March 17, 2005 Report Share Posted March 17, 2005 Amber,Welcome! We are glad you are here! I understand the frustrations of the diagnostic process! I am 25 and have POTS and CFS. The interesting part is that depending on the Dr. I am viewed to have different things. The 2 conditions have so many overlapping symptoms that no one really seems to know which is which. For example....I was originally diagnosed by an internal med. guy who thinks that POTS syndrome is the cause of my fatigue therefore I only have POTS. On the other hand I have a nuerologist who thinks that most of his POTS patients seem to have more energy than I so he feels that I must also have CFS. Anyways, I definitely was diagnosed with POTS through a tilt table test so I mainly hold to this diagnosis. I hope this helps and that you get some more answers for yourself! Keep us posted,Lisa Quote Link to comment Share on other sites More sharing options...
DawnA Posted March 18, 2005 Report Share Posted March 18, 2005 Hi welcome to the forum! POTS is common among ME/CFS sufferers. IF you can get treated for the POTS you could feel a lot better and be able to be upright longer. If you are unable to get a tilt test , they can do a poor mans tilt. It must be frustrating not being able to get the care that you need.DawnA Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 18, 2005 Report Share Posted March 18, 2005 Welcome Amber. They say patience is a virtue and we all have learned to be patient. There are a lot more questions than answers to this weird disease. There was a recent thread on here by I believe Sophia. A very good article on CFIDS. I know the care is different over here, but not so different. I am sorry you are having to go through this. This is a wonderful site. I have a condition called meneires, which is inner ear, so have different kinds of dizziness, so really feel for you. I stopped driving and have a great fear of falling too. Hang in there, and hope this site can help you. Sounds you have a nice supportive boyfriend, if you can joke a little with him, and that goes a long way. morgan Quote Link to comment Share on other sites More sharing options...
amber7helen Posted March 18, 2005 Author Report Share Posted March 18, 2005 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 Quote Link to comment Share on other sites More sharing options...
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