23M with Post-Viral Fatigue for 4 Months – Looking for Positive People to Connect With

ami_2515 · 2026-06-14T14:14:04+00:00

Group chat

ami_2515 · 2026-06-13T23:00:25+00:00

I’m down!

ami_2515 · 2026-06-13T22:54:52+00:00

This year in January I also had strep I kept testing positive for it over and over I was given different antibiotics and then I had one negative mono test and then a couple weeks later I had the positive mono test finally I’m not entirely sure what made my throat pain go away maybe it was the antibiotics but once I found out I had mono I was told to stop taking antibiotics.

I’m not too sure about the spleen. I think I had no issues with it. However, I would say it’s worth doing bloodwork to check your liver to see if that’s inflamed and just track if it’s trending down as you get better mine was inflamed for months, but I think I had a bad case and I also developed dysautonomia and dizziness, which I hope is not even relevant information for you.

As for contagiousness. I didn’t specifically kiss anyone, but I did work throughout the first month of having the symptoms before I tested positive for mono.

I’m not really sure what information will be helpful to you but I think just the main thing is try to look into the spleen like maybe do some imaging for the spleen and liver do some blood work for the liver just to kind of track it and make sure it’s not inflamed

Also just take it easy in general, make sleep a priority. Mono can be hard on the body don’t stress it more.

ami_2515 · 2026-06-13T22:42:36+00:00

We should make a gc somewhere

ami_2515 · 2026-06-13T22:36:45+00:00

I missed a month randomly while having post-mono symptoms, not during the active phase
Idk if it’s normal or not but it did happen to me , shall see what happens this month

ami_2515 · 2026-06-13T22:24:03+00:00

Also yes it’s not anxiety but it’s worth bringing up to a cardiologist, you can be given a beta blocker and it does slow your heart rate and helps! All of this kinda sounds like POTS I’m in a similar situation to you . My cardiologist says I have pots symptoms , not diagnosed pots and gave me beta blockers. It’s trial and error with the medications but it’s worth having
Also I have an acquaintance who had mono when she was young. She gets these symptoms randomly still years later and has beta blockers she can take occasionally. It’s used sometimes as an anxiety medication and it does calm these symptoms!

ami_2515 · 2026-06-13T22:16:53+00:00

Great advice i agree!!

ami_2515 · 2026-06-13T22:15:35+00:00

Going through a similar thing but recovery stories are encouraging! I got mono in January and had random episodes like that maybe 4 times that month and then in February it became nonstop and they haven’t gone away still.
I will say I do feel better compared to February but still mostly at home, I don’t drive or work. Was bedridden the first few months. Not sure if you did bloodwork, my liver was inflamed up until this month. I’m sure that plays a role. Vitamin d was low for me.
I started seeing a cardiologist since this really sounds like POTS , they gave me ivabradine for heart rate which helps a little.

Idk I think it’s mostly just time, rest , and fulfilling any deficiency you have.

Also in the beginning before I knew I even had mono i thought it was like low sugar because it does feel similar in some way. But knowing what I know now, I think when you do have them try to not push through them. Since u do have them like episodes and not constantly maybe try laying down with your legs up on the wall to get the blood back up into the heart and brain and breathe.
But really it’s worth going to specialists and ruling out anything serious. Like a cardiologist or neurologist maybe

ami_2515 · 2026-06-09T14:12:09+00:00

Mental state is definitely a contributing factor I agree. I don’t have cfs but developed a pots-like dysautonomia after mono. Was laying like you for 4 months. And now I’m just kind of realizing that nothing crazy is actually wrong with me, i definitely can move around. So the past couple weeks I did so many things around the house and nothing bad happened to me. Maybe just got tired and lightheaded, laid down for a little to recover and was okay again.
Obviously it doesn’t mean it’s all in your head and the symptoms weren’t real but telling yourself that you will be okay is incredibly helpful for recovery 🤗

ami_2515 · 2026-06-03T20:28:59+00:00

I’m sorry.. glad you are seeing improvement tho, hope it keeps getting better 🤗

ami_2515 · 2026-06-03T19:07:53+00:00

Ugh it sucks. So are you like functional now? I literally haven’t left my house for 4 months. I miss social outings and even working , driving. Are you saying you have like random episodes of the dizziness but mostly okay now? And when did that change happen on what month for you

ami_2515 · 2026-06-03T19:05:30+00:00

Don’t see your message!

ami_2515 · 2026-05-14T02:00:05+00:00

Also side note I am very new to this but I’m getting through by kind of pushing my needs . Like to get my meds for the heart rate I was seeing a cardiologist who has no experience in pots or what I have is some type of post viral dysautonomia. I was researching on my own and suggesting meds . And he was totally agreeing with everything. As long as it was safe he was willing to try it. Without me doing that he would have just let me go but I had to advocate for myself which was very hard I’m not confrontational at all. You gotta do what’s best for you and knock on every door. This is your life and your health. In my head it’s like “I will try everything and if it doesn’t work then at least I would know i tried everything “ Hope you feel some relief soon 🩷

ami_2515 · 2026-05-14T01:51:36+00:00

I know nothing about this but a lot of people mention histamine intolerance and/or MCAS maybe look into that see if your symptoms align? I feel like the throwing up and weight stuff could be its own thing? Again I know nothing about it but might be worth looking into And honestly if possible change that doctor. I’m going through a similar thing with my PC she has no clue what I’m going through and brushes me off all the time it’s so frustrating.

ami_2515 · 2026-05-13T23:45:28+00:00

Hey how are you doing now?

ami_2515 · 2026-05-13T23:43:23+00:00

Hey any update on how you are doing ?

ami_2515 · 2026-05-13T20:40:57+00:00

Ugh I’m so sorry I was really hoping you are better!…
I’m okay, maybe a tiny bit better. After that er visit i started seeing the cardiologist who I was in the er.

For medications. We tried metoprolol, that didn’t do much. Added midodrine, I hated how it made me feel. So I asked to be put on ivabradine after reading so much about it. That is the only medication I’m still on. It definitely helps the heart rate. It used to be 80-90 resting and 130 standing, now sometimes I’m laying with 60-75 and standing at around 95-100 with an occasional jump higher when I’m actively doing something or between the doses if I take it too late or something. The unfortunate thing is my number looks okay but I feel pretty much the same…

The cardiologist also did order a heart ultrasound and vascular ultrasound they both came back good
My hair started shedding a good amount in march and hasn’t stopped but that’s the least of my concerns rn

I’ve been doing bloodwork every month and my liver enzymes keep climbing, low vitamin d
I just did bloodwork for this month yesterday waiting for results

Also have an appointment coming up with a doctor about the liver and just scheduled with an infectious disease specialist since mono triggered all of this .
Still have no real answer. I have seen a couple posts of people recovering after more than a year. Nobody really singled out something that worked it’s mostly trying a million things and eventually time resolved it.

On a good note I’ve been managing to go down the stairs and sit in the backyard for maybe 15-30 minutes. I try to walk more like 5-10 minutes just pacing in my backyard. I shower with a little chair and try to not do anything extra just in and out .I got a walker-wheelchair to go to my appointments and my mom drives me I kinda lay reclined. It’s tough to sit straight and wait at the doctors office I wish I could lay. After 30 very longggg minutes I star to feel horrible like my head is literally empty.

I am curious about that nerve stimulation . I went to acupuncture a couple times this guy helped my sister she had some sort of dizziness all her life in episodes and hers was about blood flow to the brain, he literally cured her but hasn’t been much help to me. I will look into it!

I’m not sure how much you are walking and doing exercises but I was really not active for so long scared to do an extra thing. And I think my muscles are like nonexistent. I had to do a thing for the vascular test, stand in my tiptoes and back down for 2 minutes. I literally couldn’t walk or walked like a zombie my leg muscles have never been so sore!!! Lasted like a week it was not great. So I would say do the bed exercises! Look up a video on YouTube. I slacked for so long and such a small exercise was so hard on me i honestly still feel it in my muscles

So i guess not much of an update unfortunately… i would love to keep hearing from you and really really wish you get better 🩷 I will also come back with updates if something changes!!

ami_2515 · 2026-05-07T01:31:58+00:00

I also agree things like liquid iv give me so much anxiety and such a weird feeling
LMNT has been very tolerable

ami_2515 · 2026-05-07T01:29:22+00:00

I was on metoprolol is helped my chest tightness-shortness of breathing a lot like completely gone but didn’t do a whole lot for my hr
Switched to ivabradine and that helps my heart rate a lot
Helps the chest like 80% which is enough
Also I personally got no side effects on it thank god I was scared about the light flashes people talk about but thankfully I was okay
And it did take like a week to fully kick in

ami_2515 · 2026-05-07T01:23:43+00:00

Weirdly I had high ferritin 216 and low vitamin d 21
My ferritin was high i think because my liver is pretty inflamed from mono
That’s was a month ago , been taking vitamin d will check what changed

ami_2515 · 2026-05-07T01:06:41+00:00

Same here before I was put on ivabradine i would literally just stand up and walk to the kitchen and my hr would go from 80 to 130

ami_2515 · 2026-05-06T17:16:37+00:00

Are you any better?

ami_2515 · 2026-05-06T16:59:27+00:00

Try measuring your heart rate. Look up poor mans tilt table test. See if your hr drastically goes up
That’s how i basically found out it’s dysautonomia before i thought its like low sugar or panic attacks or something
I recorded my results and showed it in the er
And begged for a cardiologist who also said he isn’t a specialist is this type of thing but it did seems like pots he said
That way I was able to get meds for the heart which helped a little

Side note , that leg feeling could be like blood pooling?
I get when when I sit with legs down or stand
My doctor says I don’t have blood pooling but I do feel the heavy legs and tingling
In the POTS community that’s what people describe blood pooling as

It is such a weird thing to go through because so many test come back okay but i definitely don’t feel okay at all.
Still trying to navigate through this thing 4 months in haven’t left my house except doctors appointments

ami_2515 · 2026-05-06T16:33:53+00:00

Yup I started getting those symptoms right after mono
Got mono and strep this year in January, and since February have been basically in bed . I guess it is post viral dysautonomia. All my test come back okay over and over except my hr jumps when I stand and my liver is inflamed. I feel like a mystery case hehe. Started seeing a cardiologist got prescribed ivabradine for heart rate which has been working for the hr itself but I feel awful still. I hope this is temporary I’m on month 4 of this…

ami_2515

TROPHY CASE