Anyone not have fatigue as a main symptom - mine mainly neuro

[Pyr2]

Hi everyone, I have had reactivated EBV and CMV for the past two years. Titers show no interest in going away. Throughout this ordeal, my main symptoms have always been very neuro based. Lots of head neuralgias and muscle spasms. Am I tired, sometimes and for me, yes I'm definitely not how I used to be, but I can't really say fatigue is a main complaint for me. Because I don't really feel too much fatigue I still exercise or run around doing normal activities and yes I pay for it 48 hrs later, but mainly with increase in neuro symptoms.

If anything, Im just damn tired of battling the unrelenting cranial nerve pain. I read a lot of your fatigue stories and I don't envy you that, but this is a whole other side of the coin hell.

I am suspected as having had exposure to Lyme as well (having some Lyme specific bands - but not CDC positive). I am being treated by a LLMD and she is still teasing out whether this is mainly the Lyme or the viruses. Based on your stories which are so fatigue based, I wonder then if what Im feeling is really the Lyme and not so much the virus. Not sure whether the cause really matters anymore. I was just wondering if there was anyone out there like me. I seem to be an outlier.

Also, can you have CFS and not really be tired? Meaning, Ive had active viruses for two years that won't quit- does that qualify my case automatically?

Not sure where I stand here!

Best wishes and prayers to you all.
L

 

[jess100]

Can I assume you've been tested for other tick borne illnesses? I have a few of those Lyme bands too (I think, I'm trying to understand my labs) but am told I don't have Lyme. But I tested very positive for Babesia. So I hope you were tested for that as well.
I also have the same viruses that you have. I just started the antiviral meds about a week ago. I feel worse (more tired) than I did before starting the meds. Not sure if it's a coincidence or not.
My friend had (and recovered from) Lyme. She said she got strange pains in her feet. I've heard of the knees being affected. Is it possible the Lyme has settled into a nerve in your neck? I'm just thinking out loud here, I hope I haven't said anything too obvious to you.

 

[Valentijn]

ME is a neurological disease, and fatigue is not a particularly prominent feature of it. The identifying symptom is Post-Exertional Malaise, where neurological and immune symptoms are triggered or exacerbated by exertion. So I'm not sure where you've been reading a lot of "fatigue stories" on this forum.

We learn to avoid the level of activity which triggers the delayed symptoms. It's called pacing.

 

[Snowdrop]

From my own experience fatigue is an issue of having ignored the neuro and other symptoms for too long.
The body needs rest and whatever is going on in there needs healing so if you press on like there's nothing wrong the body gets exhausted.
And that can sometimes be hard to get out from under.

And you're right, the hell of this illness is not just we are tired. There are so many other things going on--because the illness is not really properly recognised it's hard for healthy people to understand that.

It's still early days for you (sick for years not decades) and there is hope for understanding the disease and even for treatment on the horizon hopefully. I hope you find some help here in the meantime.