Fibromyalgia Support Group

I'm sure this topic has been discussed before but since I'm new here I thought I'd ask. How many fibromyalgia people also have the E.B. (epstein-barr) virus? Do you know when the virus flares up & does it cause the fibro to flare up as well? Also what about the Cytomegalovirus? I know these are pretty common viruses that alot of people have (which I have both) & I think that one flared up & caused the others to flare up but not sure which one triggered the others. My fiance & I have been together for 2 years & he doesn't have it. So what do you do to keep the viruses dormant? Sorry about all the questions...just wanted other peoples ideas & suggestions on this subject.

Thanks

Hey, lpn! I don't know much about e.b., but it just so happens that one of our members, Mizliz, is the group leader of that forum. I'm sure she'd be happy to share what she knows. She'd probably be thrilled if you joined that group as well. I think it's the cebv group, so you'll find it under c, not e.

I think we have several members that have it. I'm sure they'll all be along to help you with your question.

Hugs, Tina

Thanks Tina =]

HI Lpn.. i have cfs/fibro/ thalassimia and EB what a hoot huh

I have no idea how to keep it dormant but I hope it stays away for a long time

Hi Lpn,

I have EBV and have had mono, and I now believe that having mono was the trigger for my FM and CFS.

I see a number of different types of docs and not one is familiar with treating it or testing it. I finally asked my neurologist to test me because after 2 years of research I felt that this may be the culprit. And I was right.

I am currently on Valtrex 500MG 1 daily. I feel so bad all the time that I couldn't tell you if it is helping or not. I have been taking it for a year now.

Hi Lpn and everyone! Lpn, i was told by my hematologist that the EBV was probably the culprit that triggered my FM but as i stated in the other post under our cebv group i rec'd no treatment although people such as sleepwalking are on valtrex! u c? i know im not crazy! there IS something they can do about it but most doctors dont and i don't get it. i will be going to the doc to ask for this valtrex stuff because it is not resolving on its own. in the meantime, i am taking Olive Leaf Extract which a member of our other group said her doctor recommended as well as glacial milk. I will try anything at this point basically. And let me just put it out here what i have been diagnosed with or told i have so far and not in any particular order and not necessarily recvg proper treatment: HPV, EBV, FMS, Vertical Nystagmus, Hiatial Hernia, GERD, COPD, Heart Murmur, High Blood Pressure, possibly RLS, possibly sleep apnea, cat and pet scans showed enlarged lymph nodes for which they say they cant find the source or reason (i say its the ebv infection duh!), I get extreme vertigo when it kicks in, i have a large mass sitting on my uterus (fibroid they believe and im supposed to have it surgically removed)and so spend most of my time on my period. sigh....and so yes....i can be very cranky sometimes lol. with all of these issues i have not had the time to follow up on testing and stuff. but anyway, i tell you all this in hopes that you dont feel alone in all this.

p.s. and how could i forget: anemia and IBS also go on my list of "stuff" as i call it.

mizilz, sleepwalking, & adewyn

thanks for the support & encouragement. All I know about EBV is that it is a virus & it can go dormant maybe with antiviral meds...like valtrex. I've never been given that. I took some homeopathic meds for it. I also did high vitamin c-detox iv's to build my immune system back up. And I do also think one or the other triggered the others...I was first diagnosed with fibro. then a month or two later just for the heck of it asked to be checked for ebv & cmv & I had both!! Though the rheumo. doc says 90% of people have these viruses at one point...well ok if that's the case then why doesn't my fiance have it? We've been together for 2 years now. I can almost tell you when I started feeling crappy...it's strange how all this goes hand in hand. I just wish there was some little magic pill to make it go away. When I get discouraged I have to keep telling myself that I didn't start feeling bad overnight & that I won't get better over night but it's so hard to keep telling myself that...lol. Thanks for letting me vent everyone!! =]

It just gets really hard at times...especially when I want to do stuff with my kids & I can't get off of the couch. I feel like I'm missing so much & they don't deserve their mom being sick! =[

Heather, fatigue comes with fibro, so I cannot imagine what it would be like to have both. It must be fatigue unimaginable.

I hope you'll find a lot of support and info here. I do know that we have several members, a bunch probably, that do have both.

Hugs, Tina

Thanks Tina,

I always tell my fiance that I can almost handle the pain...it's the fatigue that really gets to me. Sometimes I wake up in the morning, get outta bed & go to the living room, eat breakfast & lay right back down & sleep all day then get up for a shower & go back to bed. And the whole time I'm awake it's all I can do to hold my eyes open...when I lift the fork for eating it feels like it weighs a ton of bricks. Those are the times that my fiance has to just take over doing things around the house & with the kids. I won't even wish this on my worst enemy. It's pure h-ll...I feel like I'm trapped in someone else's body & I can't get out!

Finding this site has been wonderful...and meeting new people that have been supportive really helps too.!!

Thanks everyone....

Post edited by: lpn0726, at: 05/25/2009 07:26 PM