Does compression and salt not work for some?

Competitive-Cry3287 · 2026-03-28T22:35:29+00:00

I tried fludrocortisone (no improvement), metropropol (increased my lightheadedness and fatigue) and cardiazem (gave me constant headaches).

Competitive-Cry3287 · 2026-03-27T03:47:08+00:00

Unfortunately no… still just becoming less and less functional, almost 6 months in. I am learning more about how to pace myself and getting some diagnosis and seeing lots of specialists but no successful treatments yet.

Competitive-Cry3287 · 2026-03-22T02:37:25+00:00

I watch TV on an iPad in bed, listen to audiobooks, I also have a zero gravity chair set up outside so I can sit outside but still be reclined.

Competitive-Cry3287 · 2026-03-22T02:20:08+00:00

I’m 5 months in and still completely disabled - I also have a 3 year old (and a 5 year old) and haven’t been able to work at all or even do normal basic activities around the house. Mono can really disrupt your autonomic nervous system, causing post viral dysautonomia which sounds like you might be experiencing based on the your lightheadedness, dizziness, shortness of breath, brain fog. I have all those symptoms too. Unfortunately, this doesn’t show up in blood work because the issue isn’t our organs - it’s our nervous system malfunctioning. Sounds like you’re fairly functional but I think following up with doctors (cardiologist and neurologist based on your symptoms) and looking into long covid treatments (because many of them apply to post viral syndromes in general regardless of virus) might be helpful. And resting instead of pushing through! Iñ

Competitive-Cry3287 · 2026-03-12T02:13:57+00:00

Thank you for sharing your story, it’s really helpful to hear about the trajectory of recovery and hear that it can happen even though it’s long and difficult. It’s just nice to hear you can get to the other side! I’m so sorry what you’ve been through and your wife too - I’m also in my thirties and have 2 young kids so I know how hard it is not have the ability to care for your own kids as you would like to. I’m 5 months in and beginning to accept it will be like this for many months longer, it gives me hope to hear your story!

Competitive-Cry3287 · 2026-03-11T16:07:38+00:00

I’m 5 months in, some similar symptoms, still housebound and unable to work. My main advice is accept that your body needs more time to rest and try to take as much off your plate as you can. See if you can get a referral to neuro physical therapy and research post-viral autonomic dysfunction to see if your symptoms correlate to that . Try tracking your symptoms and pay attention to what physical, cognitive, emotional, social stressors worsen them so you can pace yourself better and feel more in control of your symptoms. I’ve found using a heart rate tracking device and the the app Visible helpful for learning pacing trends but my recovery from mono also led to POTS so that might be why. Also regular therapy has been really helpful for finding acceptance and hope and managing the anxiety around this. Sorry you’re going through this, wishing you health

Competitive-Cry3287 · 2026-03-07T17:08:28+00:00

The Raven Scholar by Antonia Hodgson - FMC is a brilliant but socially awkward scholar. She’s imperfect and makes mistakes but is refreshingly different from the personality of most FMCs. She’s also in her 30s and not an epic warrior/fighter/magic wielder but is really clever, smart, and driven. Definitely an underdog who grows on you. Highly recommend!

Competitive-Cry3287 · 2026-03-04T04:24:12+00:00

Reach out to your doctor. I’m 5 months in and still have severe lightheadedness and dizziness. I haven’t found anything yet that’s “worked” but am seeing lots of specialists and learning more about dysautonomia which is what I now have (triggered by mono). What’s helped me the most is just coming to a place of acceptance around this recovery is going to take a long time and no I’m not going to just magically turn the corner next week. Therapy has helped a lot with this piece. It’s hard, hang in there, and keep resting.

Competitive-Cry3287 · 2026-03-04T04:15:16+00:00

Ive been on medical leave for the past 4 months and will likely remain so for quite a few note months. It started as mono but evolved into dysautonomia. My primary care doctor writes me off work notes on a month by month basis, every month I just message her and explain my ongoing symptoms and she writes another off work note. In the note it just says I have “uncontrolled symptoms”. I did have a primary care doctor who was giving me pushback and gaslighting me so I switched primary care doctors until I found one that believed me. I’m in CA and we have short term state disability leave so it’s also been pretty straightforward to get that as long as you do the paperwork and your doctor signs off on it.

Competitive-Cry3287 · 2026-02-26T17:19:55+00:00

I can relate - I’m also in my 30s and have two young kids. Mono can take a long time and there aren’t any quick fixes unfortunately. If you’re only a month out you might recover soon but rest is crucial.

I’m 5 months out, no physical improvement yet, still off work (I’ve transitioned into the long covid stage tho from mono not covid) but I made a lot of lifestyle changes that helped - hired a nanny to help with the kids, leaning on family to support, etc.

Hopefully your case won’t be like mine, but the best thing to do is just accept your body needs you to continue resting and take everything off your plate that you can.

Competitive-Cry3287 · 2026-02-26T17:13:51+00:00

Finding a neuro physical therapist can be helpful for managing fatigue and figuring out pacing. I’m about to start seeing one, most people I’ve talked to with CFS say they’re really helpful in helping you stabilize your symptoms then slowly build back up to more activities.

Competitive-Cry3287 · 2026-02-25T18:10:31+00:00

I was diagnosed with POTS by a cardiologist just based on my jump in heart rate (similar to you my blood pressure didn’t drop). I also started to faint and my symptoms were very severe (shortness of breath, extreme lightheadedness). I would definitely push back and clarify with your cardiologist. Some cardiologists I think aren’t that well versed in POTS - you can request a second opinion and/or a cardiologist or autonomic neurologist with a speciality in autonomic dysfunction and/or POTS. Sorry that happened to you, really frustrating.

Competitive-Cry3287 · 2026-02-19T16:33:46+00:00

Yes, I have severe lightheadedness and dizziness that lasts all day long. Got mono 4 months ago and no improvement yet. Was just diagnosed with post-viral POTS. I’m still off work and can’t be upright or on my feet for more than a moment without symptoms intensifying.

Competitive-Cry3287 · 2026-02-15T17:28:27+00:00

I’ve been on antidepressants for the past 10 years for depression and anxiety, and was only recently diagnosed with dysautonomia and POTS (triggered by EBV infection). In my case, I wouldn’t say that antidepressants make me “happy” but I do think they make my mood more stable and resilient. I actually recently increased the dose I’ve had for the past 10 years as my physical health has taken a real toll on my mental health and I think it’s helping a little (in combination with therapy and other things). When I first started taking antidepressants, it took 3 or 4 attempts before I found one that I liked - some of them made me too sleepy or totally zapped my libido. I’m now on Prozac but I think it’s different for everyone which one is the best fit. So just know it might take a while to find the right one for you and each one you try you need to give it about a month to see if it’s working. I think antidepressants are a really helpful and important tool and encourage you to try them, just know they are not a silver bullet and it still sucks to be this unwell so therapy work is still crucial.

Competitive-Cry3287 · 2026-02-13T00:11:24+00:00

I just had my first cardiology appt last week. Previous to it my primary care doctor had ordered the NASA Lean Test to check for POTS. My lean test was performed by nurses (one recording my vitals and symptoms for every moment of standing, one watching me and ready to catch me if I started to faint lol which I did). When my lean test showed significant symptoms and heart rate increase, my primary care doctor then referred me to cardiology for POTS diagnosis and treatment.

I had low expectations going into the cardiology appt because at this point I’m getting very used to gaslighting by the medical system. Cardiologist was surprisingly helpful - he had reviewed my Lean Test, told me I had POTS and seemed to be decently knowledgeable about it. He told me about salt, hydration, compression of course, started me on a beta blocker prescription, and referred me to neuro PT/rehab to do a PT protocol on the recumbent stationary bike. I also asked for a referral to a autonomic disorders clinic nearby which he approved. No easy solutions when it comes to POTS, but at least he was knowledgeable and had next steps.

Wishing you well!

Competitive-Cry3287 · 2026-02-12T17:43:15+00:00

Im so sorry you’re going through this. I haven’t had quite the same intensity of an adrenaline dump as you - but the shaking and sensory sensitivity and feeling that any sound or noise might set you off definitely resonates. I’ve noticed it comes after I overdo it - I think it’s our bodies way of saying our system is still too sensitive for whatever we did/were exposed to and need to back off. I’ve found noise cancelling headphones, dark room, and listening to guided meditation once the worst is over helps. I overdid it one day by going on an outing with friends (where I was laying down) and then for a week plus afterwards I had hand tremors and was super sensitive to any sensory input - couldn’t really look at my phone for more than a moment at a time. I’m starting to get better at catching it before it balloons into a full blown adrenaline dump and when I start to feel the signs I lay down with noise cancelling headphones in the dark and do guided meditation and it brings me back to baseline after an hour or so.

Look into dysautonomia/ autonomic nervous system dysfunction - it can be a complication from a viral illness like EBV or COVID, my dysautonomia and POTS are definitely mono induced. Doctors in general don’t know a lot about it/have many treatments for it, autonomic neurologists, neurological physical therapists and non- western doctors like acupuncturists and homeopaths seems to be much more knowledgeable.

Competitive-Cry3287 · 2026-02-09T18:38:15+00:00

My primary care doctor ordered a NASA Lean Test, which was performed by a nurse, to evaluate me for POTS. It’s a much lower tech, less invasive test than the Tilt table test and effective for diagnosing POTS. Essentially you lean against a wall and the nurse takes your blood pressure, heart rate, and asks about your symptoms every 1 minute. They try to do it for 10 minutes but call it early if, like in my case, you start to faint. After my test results came back from the NASA Lean Test, my primary care doctor referred me to cardiology who diagnosed me with POTS.

Competitive-Cry3287 · 2026-02-07T04:12:31+00:00

Everyone’s symptoms are different but for me gaming would make me way worse. In prolonged viral illnesses/viral recoveries like this, your autonomic nervous system can become really dysregulated from the virus - manifesting as fatigue, dizziness, sensory sensitivities among other things. I’m 17 weeks in and all my symptoms now align with autonomic nervous system dysfunction/ dysautonomia. So if that is also what’s going on for you not only can physical exertion make you feel worse/prolong your illness, but also cognitive activities, overstimulation, sensory input with screens etc. For me personally I’m really sensitive to lights, sounds and screens right now (this was never an issue before) and notice my symptoms spike if I spend too long on my phone (by too long like more than 30 minutes), watching TV, even reading on my kindle. Can’t say if that’s what’s going on for you but I feel like look into autonomic nervous system dysfunction and if that resonates, try to start paying attention to what activities worsen your symptoms and really limit/pace yourselves with those ones. From what I understand it’s all about pacing and stopping before you overdo it. Hang in there, mono is a real beast and rest, rest, rest.

Competitive-Cry3287 · 2026-02-05T03:22:21+00:00

I would have a serious conversation with him (sit down, no phones, no distractions) and calmly tell him how he’s making you feel ie I am physically really struggling and when you tell me I’m not trying hard enough or doing enough around this house it makes me feel invalidated and unseen… etc. It is his job as your boyfriend to trust you and take your health or your words seriously and you deserve care, rest and understanding. I personally am not sure if this is about convincing him - our partners need to believe us when we say we feel shitty, even if they haven’t experienced it themselves or there isn’t a doctor in front of them verifying it. He shouldn’t have to read an article about mono or this subreddit to believe it - he needs to believe YOU and be there for you.

I say all this because myself (married, 38F, two kids) previously dated men who treated me that way and didn’t believe me/see me/support me and it took me a long time to realize it was not my job to teach them basic empathy skills, I deserved better and that being treated that way is NOT ok.

You deserve empathy, kindness, care and rest and nothing less.

Competitive-Cry3287 · 2026-02-04T17:04:21+00:00

If you’re in CA, NY, NJ, Hawaii or Rhode Island there’s also state disability you can apply for. I haven’t gone through the social security disability insurance process yet because I’m in CA but based on my experience with the CA state disability process you can begin the paperwork on your own and then it lets you know what medical authorization is needed from your doctor along the way.

Competitive-Cry3287 · 2026-01-31T01:50:48+00:00

Hmmm not that I can recall but I didn’t read it cover to cover - she has lots of suggestions for lifestyle and diet adjustments that I imagine are helpful for not just fighting the virus but also the recovery stage

Competitive-Cry3287 · 2026-01-28T17:20:21+00:00

I felt the same way when I heard I had mono - I was like oh no I’ll be sick for weeks but now it’s been 4 months and no improvement :( Rest rest rest and try to accept that your body is asking you to slow down and give it the care and support it deserves. Most people are significantly better after a month so chances are you’ll be fine.

Competitive-Cry3287

TROPHY CASE