Anyone here have CMV Mono as an adult? Was diagnosed and trying to figure this all out. If you have a current CMV or have had CMV as an adult, can you tell me your experience please? Than you.
Hi there
I might have had CMV.. it showed up as a “past infection” but I got tested about 3-4 months after initial onset of symptoms.
I was mildly fatigued and always had a sore throat and ear fullness / mild flu feeling for first two months (may have been the onset or may have been totally unrelated.. not sure.. all I know is I’m usually sick only once a year for a few days with a cold or flu but I was constantly sick!)
Then I had AWFUL, can’t move, can’t process tv or follow conversations, can’t muster the strength to call my friend for one minute fatigue. the fatigue was just like my body was too weak and tired to do anything except lay down. I had bad chills, no appetite, everything smelled very strong and my taste was like a dogs.. didn’t want to eat or smell anything. I had strange unexplained anxiety which would be like sheer terror waking me up every morning at 5:30 but that only lasted a few days.
I had breathlessness, where going to the washroom would leave me gasping for air. I had back pains, joint pains, muscle pains, headaches, sore throat, ear aches, gum pains, chest pains, flank pains, and some abdominal pains near rib cage. Night sweats too.. on and off. Sometimes drenching.
What was your experience like? Would love to hear so I can see if this really was CMV. Whatever it was... it sure seemed like mono caused by some virus. It was the worst 6 months that I’ve been through but it’s getting better slowly, month by month. But yikes.. so many times I was convinced I was dying.. in and out of urgent care so many times..
Wouldn’t wish this on my worst enemy
Hi Jen,
It was EBV Ihad when I had mono, I know CMV is a similar virus and another type that causes mono. With EBV (was 25 when I got it), taking vitamins and herbs helped me, it did take me a number of months to recover but I did get over it with time - hang in there and just take things a day at a time is all you can do when dealing with this, remember you will get through it though and get better.
Craig
Hi Jen,
my blood test also showed past glandular fever infection... That was November 2016, I count being sick from Jan17 as that was when I was really ill and bed bound.
so, 1yr and 3 months now. I mad e a big leap forward at 1 year. And I am living a pretty normal life now. I do get a bit exhausted which I need to rest and have to take things easy but things are improving slowly all the time, just takes ages!!
Its a very frustratingly slow virus to get over and just can't believe how long it takes. I think the depressive low moods and crying were the worst for me. Just would cry for no reason. Breathlessness and fatigue like I've never experienced.
rememeber though. That you will recover. I kept a diary and I look back and I can see how awful,I was, probably easier to look back than forward!!!
Take good care of yourself, this will go.
caroline xx
THANK YOU ALL for responding SO MUCH! *I am having a hard time finding detailed personal experiences with active CMV virus online, aside from the basic medical fats on the Medical sites. I was at a store yesterday and the fatigue was so bad I had to literaly sit down. I felt like I was going to pass out, I had all of the symptoms of fainting. It really scared me and why I wanted to talk to others who have been through this.
It started with the “A” strain flu at the end of February, 2018, continuing with sore throat, worst I have ever had for two months now, that wouldn’t go away after the flu. Doc checked me for CMV and EBV and came back positive, I have a current CMV Mono virus. There is a high level of the virus on my labs apparently, which is probably common.
I also, started out like Vancityraincity, mild fatigue, but now it’s so bad I have sweat pants on today and am on the couch. (I am usually a VERY- VERY active person.)
My GP Doctor referred to an Infectious Disease Doctor, who ran a zillion lab tests on me, will see him again tomorrow to follow up with the results. The specialist told me this CMV lasts anywhere from 6 months to two years, depending on if you take care of yourself and do not over do anything. (Looks like my thyroid test came back a little low, anyone else have this?)
*(Symptoms so far: Sore throat that burns pretty intently, swollen lymph nodes in the neck that are painful and increase and decrease in pain and size, intense fatigue that cycles-good days and really bad days where I can’t move some afternoons, muscle aches, joint aches, back pain, low appetite, things taste odd some days. Very spacey/brain fog. Can’t think of what else. lol)
I am SO grateful for everyone who has shared your experiences with CMV Mono. THANK YOU for responding to me and sharing your information, you have no idea how helpful the is..
NO current EVB, just CMV, sorry, brain fog.
Jen thank YOU for replying I have struggled finding CMV stories too. But our stories sound similar. Here in Canada the labs only tell us positive or negative and don’t give the doctor or the patient “numbers” so that’s why I had to do a little digging. I am now convinced I had CMV.. 6 months in I feel way better but definately not 100%. I work with children and am relatively fresh at my job so I don’t doubt I caught it from work.. apparently lots of people spend the first few years working with kids constantly sick as they catch every bug and build their immune systems up.
Jen, you’ll get there! I know the fatigue and breathlessness is so frightening I used to be scared to fall asleep at times I felt so sick I was frightened I wouldn’t wake up! But I did... so no matter how unwell you feel remember you will make it after this and every flu or cold after will be a CAKEWALK!
Xo
Totally agree with that Van, after you've been through mono / GF then you are more resilient for coping with other more regular viruses and things. Sometimes colds and things can hit you a wee bit harder in the first year or two afterwards, but that's nothing to worry about it just a natural body reaction and in the long term the virus becomes toothless and can do you no more harm.
Craig
Hi Jen,
i was diagnosed with both CMV and EBV in January. I feel like death warmed up most of the time, with so many symptoms. I don’t know which symptom to attribute to which virus. I had noticed I was getting weaker leading up to Christmas and very tired, but the weakness and pain really took effect in early January. I’ve never been a sporty type person, but have always been very active. I believe I became sick after 5 years of unrelenting stress and when the stresses seemed to be relieved that’s when my body packed it in. I’ve tried all sorts of supplements and am taking panadeine forte and Mersondyl but they really only take the edge of things. My biggest frustration is how stiff and unbending my body has become. It’s like the ligaments have shrunk or something! Just turning over in bed hurts and wakes me up! I have noticed once I’m standing and have taken several steps, I can walk easier. I’m just so sick of being sick! I have had the odd occasion where I feel really good and supple for a few hours and I think, yes, I’ve turned the corner, only to be smacked down again. I’m trying to stay positive but gee it’s hard!
I'm from Canada too. My blood was taken in lab and the test was done in public health. My dr said it the test has no value since everybody carries the virus. So I'm stuck here, not knowing even if I have mono or not.
Not related to the topic but I wanted to become an ECE and I told them that I feel unwell, they advised me to stay away from daycare as I'm going to catch virus very often.
So why do you think your is more like CMV not EBV?
Poor you Amanda, what a terrible time you've been through. You must be so sick of all this, just want to reassure that with my EBV things did get better with time - I was still in a bad way after 3-4 months, it took a few months longer for me but I did get there and this is the worst phase you are going through right now, things will get better and the intensity lessens and I do believe you will reach a phase of full recovery given time - hang in there.
Craig
God heals, trusting Him to bring healing for everyone on the forum - I believe that totally for everyone in this thread. Craig
Thankyou Craig for your kind and reassuring words, I really appreciate them. I have to admit I am worried something else is going on as it’s unusual for both to reactivate . My doctor has checked for the usual suspects - scleredoma, lupus, etc and they have some back negative fortunately. At least I’ve been blessed with doctors that listen!
Sorry you might have this too Christine.
There are lab tests that can determine if the virus is active and if it is EBV or CMV or both.. Here is a link.
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Amanda, have they checked your thyroid?
Thank you… Hope you feel 100% soon.
Hi Christine,
This virus has been a doozy, EH? Hahahahaha.. had to throw that in there. I think it’s CMV because I got tested for EBV about 2 months after intense onset of symptoms and that one also showed past infection .. though I was mildly symptomatic even 2 months prior to that so really it could be EBV caught too late or CMV. I’m thinking CMV because I didn’t have the super painful sore throat that is more usual with EBV from what I read... mine was just scratchy. But it could have been either virus really. It is so frustrating that we can’t see the numbers because it would give us hints if the viral load is increasing or decreasing, high or low. I’ve read various forums where people’s early antigen was “negative” but only by a margin (ex: positive value was 10.6 and theirs was 10.4).
Good luck Christine!
Thanks Amanda, it's just so hard to deal with I remember from going through it myself and that was just with EBV, so for you to be dealing with that and CMW is a double whammy and no wonder you are feeling so poorly. These viruses do pass and do get better in vast majority of cases, even though it can leave you feeling beaten up for months sometimes unfortunately but just want you to hold onto hope, remember there is hope and things can change. I understand your fears and worries about other things, I constantly thought that when going through it but turned out just to be the virus, but doing the right thing by checking in with the doctor and that's all you can do and just keep remembering there is hope and recovery ahead!
Craig
Hi Jen, they have checked my TSH, which is in the normal range, but they won’t check the T3 and T4 unless it’s outside the normal range. Prior to becoming sick in December/January I had put on 15 kg very quickly without changing my eating habits and I just couldn’t shift it (apparently stress can do that to you). Since these viruses reared their horrible symptoms, I’ve lost 9 kg, so I guess that’s a blessing in disguise as I’m nearly back to normal weight. I have cut out Dairy and most Carbs as they just didn’t sit well with me since becoming sick.
So mine is EBV then. My pain symptoms now are with throat, mouth. My EBV blood test showed a past infection too. When I asked my dr if these stmptoms are like monk she said no way mono could last for 1 year.
Feel better!