IS THIS WHAT CFS-IS LIKE?

Hi Robert, I have CEBV/CFS. CEBV is chronic epstein barr virus and is the virus that causes MONO. I got MONO a year and never recovered some doctors say it is cebv and some say cfs. The way I describe my fatiuge is completely disableing. I have literally been in bed or on coutch for a year, and I am only 26. If I'm sitting up my head is tilted over or leaned back on the seat because I am so fatiuge I just can't hardly hold it up. I used to think I was tired all of the time but now I know I had no clue. If I go anywhere  like to the doctor I can't handle standing in line to check out because I am so fatiuge I have to sit down. It is such a miserable feeling. I also get a low grade fever from time to time but no headache. With my CFS there is no way I could live a normal life at all, no driving, just laying dowd 24/7, no matter how much I sleep I am still so tired. I don't get the headaches though.  I was extremely active before this . I worked full time and then got home and went out everyday. Now I am just in my bed. I hope this helps. I really hope you get to feeling better. Also I do know that depression can cause fatiuge but if you are as bad off as me then I don't think it is from depression.  Feel free to contact me if you have any questions or want to chat. TTYL

B4k, I didn't get your "you''ll just have to learn to live with it" comment. I'm quite new to the whole thing, but while there perhaps is no known cure, there's plenty of treatments available to those who are willing look for them and have the cash to do so. There's dr. myhill protocol, there's the marshall protocol, there's common sense, Ayurveda, yoga, acupuncture and CBT(for reducing the psychological distress about the whole thing). There's probably much much more. Couldn't thing of anything more depressing than to hear, your going to be fatigued, always! for the rest of your life. Oh and lots of other things too!

Hi Wotan

I am going to try to answer your question as directly as I can and see if you can relate to any of it instead of trying to tell you how to fix it, cause if I knew how to fix it I would be busy writing a book right now and setting up a website instead of talking to you.

Chronic Fatigue can be anything from you just feel tired all the time to a whole bunch of symptoms that are like layers on a onion. The worst symptom is the one your going to focus on at this moment. Peel that one off somehow and there is another one under it and so on and so on.

At my very worst times in my 14 years of having this, if energy is life, I felt like a inch from dead. Regardless of a full nights sleep, I would get out of bed feeling like I had 50 pound blocks of concrete strapped to my feet. Then I would drag those feet all day long, dealing with a myriad of symptoms. Anxiety levels going up and down. Panic attacks. Mental focusing problems. Feeling like I wasn't even looking at reality anymore. Horrible neck aches, horrible jaw and facial pain, plugged ears 24/7 for months, headaches, eye pain, blurry vision, dim vision. Driving and feeling like I was going to pass out behind the wheel. Allot of times I would look at the world around me and think, this does not look real. I was living in a mental and physical hell. The more I let myself think this, and focused on it, the worse it got. It kept feeding back on me stronger and stronger.

It took me 2 years to peel this onion and get myself halfway straightened out. I never took drugs the first time around with this. Maybe I should have. But instead, I looked very closely at where I was in this mess and I realized something. What we are is essentialy what we believe we are. If we believe were losing it, the mind and body will give you back what you believe and focus on.

This is going to sound like new age clap trap, but I went to two different Psychologist and told them what I figured out and they both said the same thing after a couple of sessions. They could not tell me how to help myself, because somehow, in the middle of my mess, I had figured out how I got there, and figured out how to get myself back out of it. What you are is what you view yourself to be. The first step in the direction of "normal" is to act "normal" regardless of how you feel or think. Focus on something else, anything else but the symptoms, whether they are physical or mental.

This is the one thing we all have in common is that our self perception gets messed up in this to different degrees. Some people it hits a little, and some people lose their complete sense of self. That is basicaly what Ego is, our self perception of who and what we are. Chronic illness tears up self perception. We first lose our sense of self to the illness and this is very traumatizing. A stable self perception is what protects us. With our self perception damaged, even shattered for some, we become very vulnerable. Most of us, once we deal with it long enough develop a new, modified self perception that now has the coping skills to change what we can, and not let what we cannot change take control.

That Doctor wrote down CFS because its a disorder of exclusion and it seems as far as he was concerned, enough had been excluded to put that tag on there. What he wrote down though is not all that important. What is important is that you realize that how far this goes, how much it ends up hurting you, how far it takes you down is more in your hands and how you view it and yourself, then probably any other thing. You are not and will not lose your mind unless you bring it on by believing you are and focusing on it.

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Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Near Constant Dyspnea. Disequilibrium, prolonged standing, walking, progresses late in day.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Glucosomine, Condrotin, MSM.