will it ever end?
Posted , 2 users are following.
Hello,
I have posted on this forum before and am so grateful for all the support, but I am slowly losing hope that I will ever feel like myself again. When I was 19 I had mono in college. Was somewhat ill for about two months and very ill for about two weeks.
Fast forward 16 years and I was told in June that I had active EBV. Mind you this took about ten doctors and six months to figure out, no one thought to check for it. I still wonder if that is why this has lingered so long this time around, because I had no idea I had EBV and was forcing myself to work out and be active when I should have been resting those first six months.
I think I am over the acute phase in the sense that I generally feel ok...I go to work, I work out three nights a week (only for a half an hour), run errands, have dinner with friends, etc. However, the fatigue is still lingering. And sometimes I still have random symptoms-tingling, joint pain, etc. I feel like I am never going to feel like myself again or have the same energy level back. I used to run 13 miles every Sunday morning.
I actually wonder if it ever went completely dormant after having mono in college. I remember the year after I had mono in college, I had a two week episode where I was extremely lightheaded-just like how I felt before I got really sick from mono a year prior.
A few years ago I would randomly get an adrenaline rush right before falling asleep or I would wake up and my heart would be pounding-same thing that has happened randomly this time around. I also have days where I feel a nervous feeling that I cannot shake-like I am about to get on a stage or something. I too had that feeling sporadically a couple years ago. And about two years ago I remember my right ankle would throb when I laid down at night and I would randomly feel a little burning sensation on a patch of skin on my arm. Same symptoms that really ramped up this past year. It makes me wonder if this virus has been thriving in my body for the last 16 years-just at varying levels. I could also be correlating things that are not related. Obviously not every random ache or twitch is EBV. I see on the forum some people have had it twice or even three times, that's another reason why I feel like maybe it just never went dormant the first time as opposed to people re-catching it years later, although I'm sure that can happen as well.
0 likes, 3 replies
KCF olivia30213
Posted
Hi Olivia:
I completely understand. I have so many similar wonderings as I look back over the years of physical stuff I've experienced....I'm coming to understand that I need to think of this as a chronic illness. Even if it goes dormant, I will need to manage my immune system with lifestyle, nutrition, and supplements in hopes of keeping it dormant. I too was a runner. Not even close to being able to run yet (still have numb feet and calves) but have started doing yoga, which is exciting and a step closer to the "old life" I so dearly miss. Do you have the panel periodically pulled? I've had it drawn 4x, the last was mid December my IGM had dropped from 91 to 57.9 and IGG had dropped from 251 to 188. I'm getting closer to being dormant...hoping to see another drop in Feb when it is pulled again. I continue to "cycle" through symptoms but the symptoms seem less intense. I've also noticed what seems to be a reversal in symptoms? Like I'm noticing symptoms that I was having last summer before total hell broke out. Have you experienced this? Karen
olivia30213 KCF
Posted
Hi KCF,
Thank you for sharing your thoughts and experience. No-I have not had the test done again. I may ask for them to re-draw it at my annual exam next month though. I just don't want to end up discouraged and from my understanding there isn't much they can do about it anyway.
Yes-I feel like random symptoms cycle back after having been MIA for months. Joint pain this week. But the lingering symptom is just not having the same energy level, feeling chronically sleepy. I know EBV can trigger CFS and I wouldn't be surprised if that is what I am dealing with as well.
KCF olivia30213
Posted
Hi Olivia: It's insanely frustrating isn't it? It's so hard to make plans because I never know what a day is going to bring. Today, mid day, BAM this weird tight/hot feeling I had on the tips of my ears, inside my ears, and neck came back. Just boom, it's back. Which stresses me because that was one of the first symptoms and I wonder if it's going to get bad again. I'm hoping that my IGM has continued to drop and that maybe this (and other recent symptoms) are correlating with where the numbers might have been when they first were occurring. Like you, it took a while to figure it out so the first time the panel was drawn I was pretty high on all 4. That's my hope. My fear is everything is going back up.
Wishing you a good evening and hoping the pain and soreness eases for you soon. The daily fatigue creates exhaustion within itself...I hope this also lifts for you.