# First post from new member - Boege



## M&M (Jan 20, 2002)

Boege,I've moved your post to its own thread. I thought you might get more replies this way, and your post won't get lost on the "Daily Chit Chat Thread".


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## 22711 (Jul 1, 2006)

Hi. I'm Boege. I'm new here. This is my first post so I hope I'm posting in the right topic. I'm in my late 20s, currently not working or going to school. I was having a lot of health problems from around the time I was about 15 and went from doctor to doctor not knowing what was wrong with me. I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome back sometime around 2000 or so. I have also had recurrent digestive problems but have never had a proper diagnosis for that. At the time I was diagnosed, my symptoms were very severe to the point where I was in constant pain and my symptoms were dehibilitating.Currently I am much, much better, my family and I found out it was something environmental that was more than likely making us all so sick. It gets complicated so I'd rather not go into that, but with getting away from that environment, and much adjustment in lifestyle I am able to function fairly normally now, at least in a sense that has become normal for me. I've also had (and some, still have) visual blackouts (syncope), costrocondritis, sleeping problems, tinnitus, headaches as well as migraines. I seem to get fevers easily as well, my most recent fever being a few weeks ago at 103 after coming down with a cold that my whole family had come down with (I was the only one who had a temp above 99 degrees). My headaches, including the migraines, visual blackouts and the fibromyalgia haven't been an issue for me for the past few years. I do have occasional tension headaches as well as lasting muscle, join and bone pain when I have overexerted myself but for the most part I am very much improved today as compared to how I had been several years ago.I feel frustrated most of the time when it comes to my condition. I don't really have anyone to talk to about this, and though many of my symptoms have improved greatly, the thing that has stayed with me is the fatigue. It's something that I don't know how to properly explain to someone who doesn't know what it is but it's to the point where I have to seriously restrict my lifestyle in order to function with the semblance of normality. To make matters worse, I feel like my mind is unable to focus and I seem to be so forgetful or absent minded at times that it scares me. It gets to the point sometimes where I feel a bit off or disoriented. Like my mind just can't think straight or focus clearly.I can do much, much more than I was able to several years ago, and for that I am thankful. Though limited, I am actually able to function. I have one clear memory, back then, of walking to the post office from the parked car and taking each step was painful and a struggle for me. Raising my arms or even getting out of bed was a struggle. Now I feel fairly normal as long as if I limit myself. I can go out several times a week as long as if I make sure not to overexert myself. I have much less energy than I had before I became sick but at least some energy is there now. I had to withdraw from college in 2003 because of feeling so ill but I plan to go back next year. I am hoping taking two classes two days a week will be okay for me to handle. Transportation is the biggest thing that gets to me but I am hoping I will be able to manage somehow. I still rely on family to take me places. I don't really have a doctor who is able to treat me - I don't even know if there is any treatment aside self-regulating activity (knowing not to push my limits). My allergist had put me on Guaifenesin for the Fibromyalgia, briefly. I haven't been to my doctor in over a year and I feel very discouraged when I think of doctors. What makes matters worse is that sometimes the wait at her office can be 3 or more hours before I am able to see her. I remember one time coming in the early afternoon and not actually seeing the doctor until closing. It's just too much for me.Anyway, enough of the rambling for me. Nice to meet everyone! Boege


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## M&M (Jan 20, 2002)

Hi Boege!







Welcome to the board, and welcome to our forum! This is a great forum to visit, though weâ€™re slow most of the time, the people here are great!I lot of things about your story remind me of myself!I am also in my late 20â€™s. My struggle with ME began when I was a teenager also â€" I got Mono (Glandular Fever) when I was about 16 or 17. Though my health didnâ€™t really get really bad for several more years.I have also suffered with syncope, in addition to the many other symptoms ME brings. Were you diagnosed with anything in particular? I was diagnosed with Neurocardiogenic Syncope probably about 5 years ago. It took a LONG time to get it diagnosed, and weâ€™re still fighting to treat it.I take blood pressure medicine, and lots of different supplements to try to help control my BP, plus I try to keep my sodium/salt intake pretty high.I am so glad for you that you are at where youâ€™re at right now health wise. I am also currently more functional than I have been in years. Though I am still acutely aware of my limitations. Like you, if I can stay within my limitations, I usually feel pretty ok. Which is a far cry from being bedridden so many years ago.I am also glad that you have been able to accomplish so much under just â€œself careâ€! I have only gotten where Iâ€™m at with the help of a wonderfully caring, and knowledgeable doctor, and the advice of other very experienced patients.I credit my current state to a combination of exercise, dietary supplements prescribed by my doctor, a combination of prescription drugs, and lifestyle changes.The only bad thing about being more in control of my health is that it makes a lot of people who donâ€™t REALLY know me think that â€œIâ€™m feeling betterâ€ now. Which Iâ€™m not. Iâ€™m just living better now. The only people who truly â€œget thatâ€ are fellow ME patients, like yourself.Iâ€™m glad you came here, and glad to read your story. I hope you enjoy your stay here, and make new friends! Welcome aboard!~M&M


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## 22711 (Jul 1, 2006)

Hi M&M!I don't remember what initially triggered my chronic fatigue. I just remember feeling tired and drained all the time and somewhere along the line the fatigue became so overwhelming that I wasn't able to function anymore. I feel like I have been slowly improving over the past few years. As long as if I do not overexhert myself I can function and feel mostly normal. Many times I felt and still feel so angry and frustrated at myself as I'm unable to do the things that I loved to do. I wasn't diagnosed with anything in particular in regards to the syncope. I just remember going to several doctors and having a very hard time of it considering they seemed to be at a complete loss for what was going on. Also, none of the doctors seemed to look at the whole picture - I remember going to an ENT and being diagnosed with tinnitus, but then being told that I shouldn't be missing school. I tried to tell him about my headaches and other symptoms, but it was like talking to a brick wall. And I had experienced this over and over again. It was much, much later that finally, a doctor told me that I was experiencing syncope, but I was never given much explanation beyond that.The syncope episodes near entirely stopped after we changed our environment. I'd gone from having dozens and dozens of blackouts a day to now maybe a dozen a year, if I'm unlucky.Self-care is about all I am able to do right now but I don't think by any means I have been able to get this far on my own. Aside being at rest for most of the day, I am also fortunate in that I have family that has helped me. I have not been able to work or drive and when I was going to college I was usually attending 2 days a week and got there either by taxi or by a family member driving me there. I found that 3 days a week was too much for me and it would wear me out within a couple weeks to the point where I could no longer attend. I plan to go back next year taking two classes two days a week. It'll take me a while to get through school that way, but at least I will be able to make some progress.One of my doctors had put me on Guaifenesin for the Fibromyalgia back in 2002. I am no longer on that, though. I had also been on Benadryl nearly every day from 2003 until early last year (I think it was early last year). I don't take benadryl anymore. My allergies are slowly disappearing as well which is another huge relief for me. >>The only bad thing about being more in control of my health is that it makes a lot of people who donâ€™t REALLY know me think that â€œIâ€™m feeling betterâ€ now. Which Iâ€™m not. Iâ€™m just living better now. The only people who truly â€œget thatâ€ are fellow ME patients, like yourself.<<I understand that. Especially since I'm to some degree able to function "normally" now, I have a difficult time explaning to someone why I am able to do things on one day, but not every day, why I am home most of the time, and why I seem fine on some days but not others.-Boege


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## Clair (Sep 16, 2000)

Hi Boege







I can so identify with everything your saying. I have had ME/CFS since I was 17 but it took me until I was 26 to get a proper diagnosis....that was 5 years ago.I too also can do alot more now, by 'living better' doesn't mean I am necessarily better but I just have better skills at being able to manage it better. I pace myself alot, I make myself limits of what I can do in a day. To the outside world I'm sure it seems selfish - I have cancelled no end of social engagements at the last moment and even lost friends over it.....but I think well you wouldn't expect someone with flu to drag themselves out of bed to attend a social function...so if you can't understand why I can't go then tough luck. It's a life of making compromises....and when I occasionally overstep my limits I know I will pay for it at some point.As for Doctors...my Endocrinologist made a very good point to me, he said this 'your an intelligent woman, you know your body better than I do, I could suggest this and that but your already doing everything you should be...to be honest you probably know alot more about M.E. than I ever will so all I can offer is for you to carry on as you are and come back if you have something specific that you think I can help with' - it was refreshing for me for a medical expert to admit they don't have all the answers and to credit us with knowing what we are dealing with. I still go back every six months to see him, we discuss my progress, if there is something specific he will refer me to an appropriate specialist and give me any tests I ask for. I know for some that is depressing because there is no sign of a cure on the horizon but the way I look at it.....my specialist trusts me in the meantime to do what is best for me. As for others, there will always be those who are ignorant and won't understand....you just have to believe in yourself and know that you know best for yourself and in some ways you have to adopt the attitude 'I must do always what is best for me' and to hell with what others think. True loved ones will take the rough with the good no matter what, those that do not are not worth your attention.Take care hon, and take it easy you have come to the right place


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## 22711 (Jul 1, 2006)

> quote:Originally posted by Clair:As for others, there will always be those who are ignorant and won't understand....you just have to believe in yourself and know that you know best for yourself and in some ways you have to adopt the attitude 'I must do always what is best for me' and to hell with what others think. True loved ones will take the rough with the good no matter what, those that do not are not worth your attention.Take care hon, and take it easy you have come to the right place


Hi Clair! Well, I finally went to my doctor last week. I was dreading going to her because the wait before I see her can be hours and it wears me out. This time the whole appointment was over in about 2 hours so not as much waiting as before, thankfully. I'm glad I went. I have been feeling rather crummy lately after overexherting myself both mentally and physically recently. "To hell with what others think." Yes, that is pretty much the attitude I have adopted. I have learned that no matter how sick a person is, if another person can't see that illness, or doesn't understand it, there will always those who will be ignorant.


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