Chronic Fatigue Syndrome Community

I tried replying to you but the website was down or maybe I wrote too much. I was also diagnosed with EBV Epstein Barr Virus and there are a lot of theories that say that CFS stems from the EBV virus as well as other viruses and stressors that trigger dormant viruses that flare. I have some really useful and informative websites that are great for researching more about this complex debiliating disease and would happy to give them to you. I try to get on here as much as I can but sometimes I have bouts of being sick for 2 months or more. Right now at the moment I am felling better and trying to catch up on here. There is hope for this disease and there are great people out there finding answers and researching it. If you want to contact me back please do on here. I have had CFS since 14 and probably earlier but was diagnosed the. So I know how exhausting and frustrating it can be.

I know my CFS started with a bout of mono. I was an active mother of 2, , wife, track coach, teacher, youth leader, etc. since mono 3 years ago, I have had several relapses and have to slow down quite a bit. Thankfully, I have been able to keep my teaching job (no sick days left), but I am not the wife, mother, teacher I used to be. Getting on ADHD meds have helped my energy levels as well as yoga and knowing when to stop everything and go to bed.

Unfortunately for many of us, science is pretty convincing that EBV is not what causes CFS but it may be something similar that has not been found out yet. http://emedicine.medscape.com/article/235980-overview
I felt the same for years, I still wonder if I picked up something from a blood transfusion at at 9 and it sat until it triggered later when I had a bout of herpangina. It really does appear that most of us have a particular viral episode we can point to as our trigger point (pun intended for MPS sufferers like myself). Whether we're born with this thing inside of us, we acquire it somehow through nature or chemical issues from food or environment or we all caught the same virus at some point during a routine cold or flu...who knows? I've had this thing for 20 yrs now. I had it back when it was first called "post viral fatigue syndrome". I can tell you there are great books to help you feel better and mostly what you are looking for is anything to help Inflammation and Leaky gut. "The Inflammation Syndrome" would be a good first read. Get the inflammation down and it's not going to cure you but it will really help. It requires a strict diet but most of us with this illness understand that is part of this for life. Mess up the food, mess up the body. One serving of grains has me in incredible pain with brain fog for days. Sugar, forget it. It's the most inflammatory thing you can put in your mouth. Another thing that helps is gentle exercise. Even if all you can do is stretch after a shower or bath when your muscles are loose, try to do it a bit daily. Mine is swimming in warm water when I can get there.

Some thoughts as you are on this journey.
Keep a pain journal.
Should you need to go for SSDI this will be helpful.
When you go to your doctor, be sure you see an MD or a DO, not an ARNP or PA. If you end up needing SSDI, the gov't doesn't like anything but "real" doctors on your files. When you see your doctors or specialists be sure they note your pain levels each time you go. Office notes can be sketchy and they are important.
Get all the PT you can afford. Massage is particularly helpful at keeping things moving for me. It's soothing for body and soul.
Ok, that's all I have for the moment. My hands are giving out and hubby is sleeping so I don't want to use my dragon naturally speaking software and wake him.
peace
Grace