I need some advice. Back in October, I started to experience pains/sore/bruised feeling in areas all over my body. When these flare ups are on, they are symmetrical from upper arms, hands and fingers, upper legs, and toes and feet. Prior to October, I was going to the chiropractor and it was discovered that I have some scoliosis and arthritis in my legs. I also went to my PCP for blood work and the tests came back that at one time I had the Epstein-Barr virus and my anti-bodies were high. These flare ups comes and go and when they are on, they are on. My whole body hurts and even my fingers and toes will feel pinchy/tingly. It really knocks me out and causes me to feel drained and fatigued all the time. The PCP chalked it up to Chronic Fatigue and said let it take it's course. The thing is, I will deal with at least one of these symptoms per day and it's starting to get old. I just feel like I'm in a constant fog and it's never-ending.
Does anyone have any experience with this or have any advice?
I'm sorry it took you so long to get a reply from anyone. This is my first time looking at the EBV board. A little background on myself: I have also been diagnosed with EBV; my tests indicated that it was active between six months to a year prior to the initial testing (initial testing was about three months ago). My most recent blood test (a week ago or so) revealed that the EBV is currently inactive. The symptoms that my rheumatologist said could be partially explained by the EBV still linger on and have not actually let up at all. At my last appointment I asked the rheumatologist how long I could expect this last. He responded that for most people these problems are gone once the virus becomes inactive, but for some of us, the symptoms can last for weeks, months, or even years. Uplifting, right?
My husband did a lot of research on a supplement called l-carnitine and I have been taking it for at least several months now. I cannot tell you whether it actually helps my energy levels, as this is soo hard to gauge and varies based on a wide variety of things, anyway. What I CAN tell you is this: if I take it close to when I want to sleep, there is no hope of actually sleeping. Each time I have taken it late in the day I have trouble falling asleep, which leads me to believe that it does, in fact, help my energy levels. I guess it builds up in your system, as well, so I am still taking it. I know it's only a small glimmer of hope, but my suspicion that it's helping (even if only a tiny bit) is enough for me to swallow three of the enormous pills a day.
I try to do a short amount of yoga each day. It helps with pain, not with energy. I am exhausted afterward and have even fallen asleep right on my floor after finishing, but it seems like the only time the pain stops is when I'm doing yoga. I subscribe to a very inexpensive website ($10 per month) that allows me to access hundreds of yoga videos. Long, short, hard, easy, you name it. I have several that I do over and over again.
I wish I could be of more help, but these are the only things I've found to help me, so far...
Last edited by moderator2; 07-10-2012 at 11:22 AM.