Long term mono help
Posted , 4 users are following.
Hi,
I was diagnosed with mono in August 2022. the first couple of months were difficult but started to slowly get better. However since around January, I still have lingering symptoms that dont seem to improve since then. I feel fatigued, I get mild sinus pressure and my head hurts. The fatigue is still whats difficult the most. Im so desperate to feel like my old self as its going to be a year soon. what didnt likely help is that I got covid in december but it was mild. My doctor ran tests and says there is nothing wrong with me and that it could be a mix of mono/covid or anxiety. im not an overly anxious person. Has anyone had long term fatigue and anything I can do? this has affected my every day life. thank you.
0 likes, 5 replies
amin05697 tdiama
Edited
Hi. I am 21 months into mono, and I have had several covid infections plus a cople of mono flareups in between. getting covid on top of mono, cause your mono symptoms to return back like the initial onset, or even with new symptoms. As you may know, it is suspected that long covid might be caused by reactivation of Epstein Barr virus.
Just like you, I was recovering from mono until the 4th month when I contracted O-micron Covid, and that set me back really bad, however, after another 4 month I started recovering again, but, unfortunately, I overestimated my capacity, and resumed exercise, and that caused another setback. Now that I look at my journals, I can see a meaningful relation between each of my flare-ups and the amount of (extra) activity I did the days before.
I am currently having that kind of sinus presure (but I believe that it is related to brain-stem inflammation, as it is common in covid and long covid), and I had it a few months ago after another covid and it took almost two months to disappear.
So, my advise is to be patient, and not to compare your body and your capacity with your old previous version. You should pace your activity in a way that you don't experience fatigue. Even sitting can be exertional .
The best way to rest your body, is to lie down on the ground or bed, preferebaly with your legs elevated. try to do this as much as possible, and distributed in between your activities.
Again, the most important advice, based on my experience, is to not push your body through. Every time you experience a crash or a major decline in your energy envelop, you should again accept the situation and find your new energy limit, try to stay in its boundery, and wait until your energy improve.
If you wake up some morning and feel quite energetic and normal, don't be deceived! This illness doesn't heal over night or even over a few weeks. The more you stay disciplined with your pacing and energy expenditure, the faster you recover.
Especially, if you experience some alarming symptoms like chills and shivering, it is better to drastically reduce your activity until they disappear.
I also have some good results from intermittent fasting. However, don't over-do it.
tdiama amin05697
Posted
hi thanks so much for the reply and helpful information. Did you consult with any kind of specialist? Someone told me that it might be worth seeing an infectious disease specialist.
Im having a difficult time pacing my work life balance. I feel so exhausted after work and dont have energy to do much. Have you been working too? that must be tough.
amin05697 tdiama
Posted
No, unfortunately I haven't been able to work since 21 months ago. I can't sit at a desk for more than 5-6 hours, and even with that amount, I would be productive and sharp-minded only for the first 2-3 hours. If I add transportation and walking to that, then nothing lefts.
After 21 months, just know I am learning how to handle my illness. I had made several mistakes, mostly that every time I had some progress, I overestimated my recovery and thought I am completely healed. And because I have ADHD, every time I overdid exercise or returned back to hiking... and that set me back to the first place.
lolo81 tdiama
Posted
I'm in a really similar situation! I’ve also had debilitating fatigue since August 2022 with a range of other annoying symptoms. I then had tonsillitis in November which really knocked back my recovery. I got a bit better but the last month or so I’ve been crashing again, not sure why 😦
I don’t have much advice but I would say prioritise rest, don’t push your energy limits AT ALL, and lower your stress as much as you can. I had to quit work and uni which sucks, but it’s been worth it to keep myself from getting worse. I feel your pain about just wanting to be your old self. I’ve had a lot of days where it really hits me and I just miss my old life so much; I’ve found it’s best to just let myself feel that grief until it passes, and try to enjoy the little things in my day (as cliché as that sounds that mindfulness kind of stuff has really kept me sane).
Hang in there, even though it can take a longgg time with this disease I’m sure we’ll both get better eventually!!!
lucy73863 lolo81
Posted
Your comment made me feel seen.
so sorry you've been battling this since August last year. I was due to return to uni this year but 3 months into mono and can barely do basic tasks around the house.... nevermind study.
exercise is like a distant memory from a version of myself I don't recognize.
I can't imagine getting to the 1year mark, you should be so proud of your strength to get through this.
Mindfulness is healing too. I'm trying to be more mindful and less attached to the life I envisioned for myself but it's so hard to let go.
thank you for sharing. hope your fatigue improves.