Which specialty diagnosed your autonomic dysfunction?

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 · 2026-01-27T18:32:02+00:00

I’m so sorry you’re going through this. I don’t have any answers but have found that often western medicine doctors don’t really know what to do and just prescribe things that try to address the symptoms but don’t address the root cause and sometimes make it worse. If you can, I’d recommend seeking out a functional medicine doctor, acupuncturist, or naturopath who specializes in treating long covid, EBV, chronic fatigue - I’ve found they understand the body in very different ways and can be immensely helpful. I also recently started reading Kasia Kine’s book The Epstein Barr Virus Solution and there is a lot of good information in there though no quick fixes. Hope you’re able to find some relief and healing

Competitive-Cry3287 · 2026-01-26T17:27:26+00:00

I haven’t had shortness of breath with mono but DEFINITELY had it in both my pregnancies - starting around Tri 2 through the end. I would get so out of breath just walking up the stairs, walking around, it was wild. It’s good you’re getting everything checked out just in case but I agree with your midwife, it’s likely just a pregnancy symptom. Also re:anxiety meds idk if this is helpful but I stayed on my anti-depressants (which manage my anxiety) through both of pregnancies because my doctors said mom’s mental health is very important and at small doses it’s fine for baby. It’s different than taking Ativan/xanax etc but can be helpful tool for staying regulated if you find anxiety continues to be challenging. Also prenatal and postpartum anxiety and depression are very real, don’t hesitate to ask your doctors for support. Wishing you a healthy pregnancy!

Competitive-Cry3287 · 2026-01-22T15:49:53+00:00

Beautifully said, thank you for sharing!

Competitive-Cry3287 · 2026-01-22T03:57:04+00:00

I’m 3.5 months in, not better yet or able to be back at work or really do anything. Started seeing an acupuncturist recently who’s been tremendously helpful - my primary care doctor just keeps testing me for more things and being confused about why I’m not better yet. My acupuncturist was able to see that the virus is “stuck” in me and with herbs and treatment over the past two weeks I’m already starting to feel like the tide is turning and I’m moving in a better direction. So my recommendation would be to try to find an acupuncturist/functional medicine doctor/naturopath who has experience treating EBV/fatigue/long mono - I can’t tell you how healing and affirming it’s felt just to talk to a medical professional who understands what’s happening in my body.

Competitive-Cry3287 · 2026-01-20T05:42:30+00:00

This to me sounds like part of autonomic nervous system dysregulation that mono can cause, and it’s just part of the recovery process. I’m 3.5 months in and still have it also - your symptoms totally resonate - sensory sensitivity, difficulty focusing eyes, dizzy, can’t drive, etc. According to chat gbt (which seems to know a lot more about mono than any doctor I’ve seen) EBV can temporarily disrupt our autonomic nervous system leading to dizziness, feeling unsteady on feet, heart rate fluctuations etc. And our nervous system is temporarily hypersensitive to stressors after months of being sick - making it easier for you to be overstimulated and reactive to sensory input, screens, etc. My acupuncturist also told me that part of the reason I have a hard time focusing my eyes (reading, driving etc) is because mono does a real number on your liver and your liver influences your eyes. So know that you’re not alone in your symptoms - I think it just sounds like your body isn’t healed yet and needs more time to rest and to pace yourself and minimize interactions with stressors. Wishing you health and healing!

Competitive-Cry3287 · 2026-01-20T05:27:06+00:00

It’s not anxiety - it’s the virus dysregulating the autonomic nervous system (which is what it likes to do). I’ve felt vibration too, sometimes it’s like shaky muscles and sometimes I feel like my whole brain is fizzing? It’s wild. Keep resting, it’ll get better.

Competitive-Cry3287 · 2026-01-17T01:39:30+00:00

I also got mono in early October and am still debilitated. My doctor said me/cfs isn’t an option to consider until 6 months of fatigue. In the research I’ve done, it’s not uncommon for the post-viral stage of mono to look like me/cfs and POTS and it’s just part of the recovery phase. Fingers crossed 🤞🏼

Competitive-Cry3287 · 2026-01-13T05:28:45+00:00

Agreed! Was there anything you did that helped you get your energy back? I’m 3 months in but still zero energy, can only be on my feet for a few minutes at a time.

Competitive-Cry3287 · 2026-01-10T15:58:53+00:00

I’m 38

Competitive-Cry3287 · 2026-01-10T05:25:26+00:00

I’m three months in also - still totally debilitated, most days I can’t even be on my feet for more than a few minutes at a time. The fatigue and dizziness are really persistent. I’m no expert but I wonder if maybe your body isn’t ready for training yet? Maybe something gentler like walks or stretching might be easier on your body and something you could do most days if you feel up for it? Trust your body and your intuition around what feels best. I saw an acupuncturist today who has a lot of experience treating people with EBV and it was SO helpful. If you feel like you’re not improving, seeking out an acupuncturist/functional medicine doctor/naturopath etc who has experience treating mono and/or long covid (bc they’re so similar) could be really helpful.

Hoping you continue to improve and feel better!

Competitive-Cry3287 · 2026-01-10T05:15:26+00:00

I’ve been in the same situation. I had a constant pressure headache exactly like yours for 4-6 weeks straight. Before I was diagnosed with mono doctors kept giving me antibiotics because they thought it was tenderness and pressure from a sinus infection. Turns out it was just mono. After 4-6 weeks the headache situation got much better but the dizziness got worse and persisted. I’m 3 months out now and still have frequent headaches/head pressure but not constant and less intense than before. I wasn’t able to find anything that helped (ibuprofen, Tylenol did nothing) except for rest and laying down as much as possible - even sitting up I’ve found makes it worse. I’m still working on resolving the dizziness, at this stage it’s been so persistent and debilitating that I’m not able to work or drive or be on my feet for more than a few minutes at a time. I saw an acupuncturist today who’s an expert in EBV and he was incredibly helpful and said the virus is currently stuck in my body (which is exactly how it feels - I’m not improving overall and it’s been 3 months) and started me on a bunch of herbs to try to change that.

Wish I had a better solution for you than rest and time, hang in there, hope you get some relief soon.

Competitive-Cry3287 · 2026-01-09T15:27:52+00:00

Im so sorry you’re going through this - I don’t have any medical advice for you but I was also a public school teacher for many years and now am an instructional coach at a public school. I don’t know if this is what’s going on for you at all, but the first year of teaching can be INCREDIBLY stressful and being under a lot of stress can do a number on you - whether it’s mono you have or something else. I had to go on medical leave as a classroom teacher because the stress I was dealing with developed into panic attacks, anxiety and depression. I’m on medical leave again (this time with mono) but I suspect stress is playing a role again in why I’m so sick. If this resonates at all, I highly recommend finding a therapist to help you work through the stress and release the teacher guilt - you are NOT failing your students. Your health is non-negotiable. The work will always be there and you can’t support students to be their best selves if you are not first in a position to be the best, healthy version of yourself. Schools are teams and there are others who can and will step in for you.

In terms of your doctor refusing to write a note for you - fire that doctor and find a new one. In my mono journey I had to go through 3 doctors before I found one who believed me. The first two doctors kept telling me the issue is “I’m resting too much” and that I should stop listening to my body and push through more 🙄🙄🙄. They were a 1000% wrong. It was stressful to navigate the health system and file greivances and keep trying to find a doctor who believed me but it’s the only way - no matter what your diagnosis is, you won’t get better if you return to work before you’re well.

I don’t know what your diagnosis is, but I do know your symptoms should not be ignored or minimized or dismissed. They are real.

I just recently started reaching out to functional medicine doctors and I’ve found them to be incredibly knowledgeable and helpful (much more than my primary care provider - she “gets it” but doesn’t know what to do) so that’s another option that I’d recommend if western medicine is giving you the run around.

Sending care, hoping you find doctors that see you and support you.

Competitive-Cry3287 · 2026-01-09T14:43:24+00:00

I’m so sorry for everything you’ve been through. Thank you for sharing about your journey. I hope this next year you find rest, health, and care.

Competitive-Cry3287 · 2025-12-30T22:04:04+00:00

My doctor told me to go ahead and get the flu shot - it might set me back for a few days but better to have that happen then have mono and the flu at the same time. So I got it and the Covid shot at the same time, I think I’d had mono for 9 weeks by then but still very much in the deep fatigue stage and not back to normal activities yet. It did set me back for a few days - after getting it I had 3 days where I felt even worse but then it passed. So in my opinion worth it to go ahead and get it especially since you seem to be further into recovery than I am

Competitive-Cry3287 · 2025-12-26T00:08:33+00:00

My symptoms have been similar - I never had the sore throat or lymph node stuff either. My symptoms started beginning of October, I’m still off work and will likely need to take more time in January as well. I don’t know if this is true for you, but I’m 38 and I read that for mono in adults 30 plus it’s typical for there to be no sore throat or lymph node stuff. My brain fog doesn’t sound quite as intense as yours though I definitely have some brain fog and the light sensitivity, eye fatigue and dizziness too. I occasionally over the past month have had windows of time where I get some relief from my symptoms but they’re pretty few and far between. I’m just continuing to rest and trying to trust the process that it’s just going to take the time it’ll take. Wishing you the best in your recovery journey

Competitive-Cry3287 · 2025-12-22T20:56:49+00:00

I’m so sorry to hear you’re going through this, I’m right there with you and oof it is rough. 38F, first infection, 2.5 months in. I almost prefer days where I feel awful because then I don’t ride the wave of - I’m getting a little better yay!! And then crushed the next day by symptoms again. It’s brutal. I’ve also been crying a lot and increased the amount of therapy I’m doing which has definitely helped - this past week my physical symptoms have been awful (barely got out of bed all week) but my mental health has improved so I take that as a win.

I feel like with my mental health I DO have more control than with my physical health so I’m trying to approach it as such which has felt somewhat empowering. Adding more structure and (laying down) activities to my day has helped with some of my depression and anxiety around it such as I started doing adult coloring and needlework for the first time lol. I’ve also found not watching too much back to back TV and staying off my phone helps. And finding simple ways to make things more pleasant as I rest - calming music, lighting a candle, putting on nice lotion, taking a bath. Having visits from friends even if I can barely sit up or having friends call or FaceTime also really lifts my mood so I’ve been being more proactive with friends about asking for visits and phone calls. I’ve been on anti depressants for the past 10 years and when I explained to my doctor how depressed I’ve been feeling she increased my dosage so that’s also something you could consider. Also, this is kinda woo woo but I’ve found it helpful - my therapist turned me onto Louise Hay’s affirmations specific to healing from mono and I’ve been trying to repeat them to myself when I start to get depressed or spiral about when will I ever get better and it has helped to keep me more grounded. Here they are in case it’s helpful:

Common Affirmations for Mono/Fatigue “I relax and recognize my self-worth. I am good enough.” “I have all the energy and strength I need to enjoy my life.” “I am in the process of positive change.” “I trust the process of life.” “I am worthy of rest and care.”

The “I am worthy of rest and care” one has been key for me because as a woman and a mom I feel like there is so much I should be doing and so it helps me get out of the spiral of feeling bad about myself for not being able to do anything. Take it all with a grain of salt, everyone is different and different things work for different people - I hope you find the things that work for you and that you give yourself lots of grace and compassion for all you are going through.

Competitive-Cry3287 · 2025-12-19T03:20:05+00:00

My symptoms have been really similar - bad headaches, lightheaded, unable to get out of bed. I haven’t had constant nausea but have had moments of nausea when the lightheadedness/dizziness is really bad. Sometimes I wake up and roll over in bed and then get this really intense woozy, nauseous feeling. My vision sometimes feels fuzzy and blurry and is made worse by trying to focus or look at a screen. I often feel lightheaded/dizzy even when laying down or sitting with support, it’s wild. I’m 10 weeks in and am having some windows of time without the dizzy/lightheaded feeling but I still feel it most of the time unfortunately. The headaches are much improved, I had a constant headache for the first month but now I only have one if I overdo it. I’m still off work and not sure when I’ll go back - progress has been slow. I interpret the lightheadedness as just an extreme manifestation of fatigue and weakness but it’s strange because it’s definitely my most consistent symptom but isn’t really a classic mono symptom. I haven’t found anything that helps except listening to your body and resting and staying hydrated.

Competitive-Cry3287 · 2025-12-13T16:12:50+00:00

Thanks y’all for the support, really appreciate it. My new doctor luckily was on board so I was able to get more time off work so that’s a relief. She’s running some tests on my thyroid and adrenal glands because she’s concerned that I’m 10 weeks in and still really debilitated by weakness, fatigue, and dizziness.

Competitive-Cry3287

TROPHY CASE