Post-mono CFS question... please any feedback

Hi everyone.  25/m here.  In January, I came down with a case of mono that lasted two weeks.  Everything calmed down shortly after.

About a month or two later, I developed a chronic cough that has never quite gone away and is still sticking around.  Maybe another month after that, I developed fatigue and noticed some enlarged non-tender lymph nodes on my neck. This is the point where my doctor tested me for mono and everything (all EBV titers) came back positive.  He said I was still fighting the initial infection from January.

Well here I am nine months later, STILL fatigued, still with the nontender lymph nodes, still with a cough that won't quite go away.  

I have been most concerned about the non-tender lymph nodes, thinking it could be lymphoma.  My doctors have all dismissed this idea, though, even though I haven't had a biopsy.  

I've seen post-viral CFS can present with enlarged lymph nodes.  Do they have to be tender to be considered CFS?  Could someone with CFS have non-tender lymph nodes?

Also, the weirdest part is I've had new nodes pop up as recently as maybe a month ago.  If this was JUST mono, wouldn't the nodes not me coming up anymore at this point?  Is this something CFS could cause?

[helen41]

A viral infection certainly can precipitate coming down with CFS, and lymph nodes don't have to be particularly tender for a diagnosis, but most people with CFS find the fatigue, thinking problems and the inability to exert themselves in any way is the overwhelming complaint. Pain happens, sore throat, swollen lymph nodes, all of those are problems, but not THE problem.
It sounds like your cough is a major symptom, which doesn't fit the classic picture. You don't mention the cognitive problems, which are very troublesome to people. The diagnosis of CFS is one of exclusion, because there isn't a reliable test yet. I would suggest keeping it in the back of your mind as a possibility, but to carry on seeking other answers as well.
Hope this helps.

[acker]

cfs doesn't so much CAUSE stuff as much as it shows up when something else has caused IT.
the nodes are quite a bit of a concern.
it is typical that cfs has showed up after an infection like mono. i don't know why the drs aren't jumping up and down about it more...
my cousin (13 at the time) had similar - severe fatigue and headaches for almost 8 months following mono. poor bugg3r. he seems fine now.
your lymphatic system sure seems to be inflamed over something. i guess that's what the drs are saying is related to the mono.
yes i think non-tender lymph nodes could be related to your cfs, whatever the whole picture is.
just continue to rest as much as possible, overexertion can cause heart problems, as well as make you feel plain crummy.
sounds like you have already gotten a second opinion, you might need a third. when you go to the dr, don't mention 'cfs', it might be too distracting. just describe the exhaustion and the nodes.

[blank65]

Thanks for the responses guys.  The doctors keep telling me it's just my body still trying to fight off the mono and that mono can really wreck havoc for some people.  But the fatigue and lymph nodes still popping up is what makes me think, "still fighting off mono" is actually some kind of post-viral fatigue problem.  

It's the lymphoma concerns that scare me the most, but four ENTs dismissing that at this point, I guess leaves me believing I have some kind of post-viral problem.  

To be honest, the worst part at his point isn't how I feel, it's the not knowing for sure what's going on...