r/covidlonghaulers

So, I'm a doctor who was going into a surgical residency when I caught Covid at work. I've tried to get back to work for almost 2 years now, but I keep crashing. I have now been on full sick leave since 3 months and realize my low capacity. I was a very active skier and biked to work every day but now I can only walk about 4 km daily without PEM (some days much less).

Me and my wife are grieving the life we had and the city life with all the required energy it takes to even be a part of work and social life is such misery.

We are renting out our aptm and moving to the countryside for a year or two. We feel so stuck chasing a cure like this. Medical care haven't done shit for me except some sleeping pills because it can't cure a complex condition like this. I need to slow down an already slow life, but I need to relax as best I can. It's hard with all these pains, fatigue, migraines, dysautonomia etc, but what other alternative is there? Atleast then I can watch the birds sing and the seasons change without the ambition and noise of the city giving med headaches (literally).

I need to find a baseline and stay there, this push and crash and full on misery looking and hoping for some cure is making me sicker. My wife said she has had enough seeing me in this much pain.

Did anyone try a 180 and simplified their lives? How do you handle the guilt of being cared for? My wife's income is all we will have once social security tries to force me into work again and I say no.

What’s everybody’s experience with triple anticoagulant therapy and/or Dr. Jordan Vaughn? Do you think the microclot theory was/is a large contributor to symptoms? Did treating it give you relief? Give me the good, the bad and the ugly

I've been disabled and off work for almost 4 years now due to mental health reasons. I've had the same psychiatrist since 2019/2020 so I've been fortunate to have had constant follow-ups, I tried every treatment that was offered to me (TMS, day hospital programs, ketamine treatments, etc) and have tried a countless number of medications since 2018 because mental health issues have always been a part of my life.

In the past 4 years, I haven't had any signs of improvement and have been feeling more and more lethargic, no matter how much I sleep, I never feel rested. I have no motivation and am just completely exhausted every morning due to nightlong nightmares every single night.

Long covid hadn't occurred to me until a few days ago. Insomnia/depression and other mental health issues have always been issues in my life. I've always had depressive episodes, but none that have lasted that long or were that intense. I'm also very medicated and it's hard to compare when every memory before the last 5 minutes is already foggy.

What leads me to believe that this might be what it is:

-Constant fatigue, lack of motivation and complete lethargy

-Insomnia, difficulty falling asleep (I take sleeping pills every day), and difficulty staying asleep (despite the pills).

-Affected cognitive abilities and severe brain fog.

-Joint and muscle aches.

-I feel like I need 3-5 days to recover from any social interaction, medical appointment or simple task.

-Digestive issues.

-Hormonal issues that I didn't have before (acne, despite having done an accutane treatment as a teen, thyroid imbalance and messed up menstruations).

On top of my pre-existing diagnoses of depression, dysthymia, GAD, PTSD, CPTSD and my neuro divergence related diagnoses, it may not have occurred to me or my doctors that long covid could be the culprit (adding on to the existing issues).

I got covid in 2022, a few months before going on leave for disability for the current depressive episode.

Sorry for the long text, but I would really appreciate the feedback from people who are the most likely to understand the struggles of long covid, and the excruciating task of constantly having to justify an invisible disability.

I will obviously reach out to my doctor as soon as it's possible to get an appointment, but I wanted some feedback to figure out if this could be a possibility.

Thank you everyone ✨

Edits: grammar-spelling

I have lost so much to this. I was just 17 when this shit started. I hope I can get better

What shows do you all put on in the background during a flare / crash?

When my blood sugar drops below 4.8, I feel great and full of energy, and my muscle pain is gone. I can even exercise a little.

Between meals, there is a 5-hour gap. I wait until I am hungry and my stomach is empty, and my last meal is 3 hours before going to bed.

I eat healthy carbs (potatoes, rice, sugar-free sourdough rye bread, oats with milk, legumes) and enough protein (meat, eggs, cheese).

Some people improve with fasting or a low-carb diet. I think there is a connection between long covid and blood sugar.

And there is another important thing. Smells and allergens in the apartment can make MCAS worse, like the smell of wood from the floor, chemical odors, mold, mites, etc. Actually, any smell can be a problem and can cause shortness of breath.

Therefore, I always keep my window open to breathe fresh air.

How have you been doing guys?

I never got better over the course of the illness. Only steady decline to very severe ME/CSF. I am still trying to push for investigations of autoimmunity in my case (small fibre neuropathy, possible autoimmune ganglionopathy and all that stuff).

as controversial as they are watching youtube videos of people who have recovered on raelan agele's channel gives me encouragement & motivation.

while i feel staying in touch with the reality of covid is important to work with, it can feel very doom and gloom and make the experience harder.

what are your go-tos to feel hopeful & motivated again?

Hi all! Anyone have experience with pregnancy while having long covid? Did you get better or worse? I got pregnant last year in January and in March had to undergo a d&c at 7 weeks due to miscarriage so I actually never got to find out how my long covid was going to really react to the pregnancy. Me and my husband are considering another baby but I need to know what others have experienced. My symptoms are mostly neurological & dysautonomia. Lots of dizziness/unsteadiness etc. let me know your experiences! I have two children already that I had before getting long covid btw so dont worry about me biting off more than I can chew. I’ve already had to adapt because of my pre existing children so it’s not like I’m choosing to bring another into the world knowing I can’t care for a child since I had children already before I got sick and not caring for them was never an option.

Hi all, I've had long covid since 2023 (reinfections in 2024 and 2026 unfortunately, very bad luck) and am struggling to decide between some different options my doctor gave me after being at a plateau for a long time. I would be super grateful for relevant experience and insights! Sending love to everyone dealing with this.

I'm 27F and work as a teacher, which I'm able to do but I feel at my absolute physical limit most days. My regular symptoms include low BP, bad head rushes and dizziness (diagnosed as orthostatic hypotension but not quite at the criteria for POTS), headaches, tinnitus, diagnosed heart inflammation and arrhythmias, brain fog, chronic post nasal drip and sinus pain, nerve pain in hands and feet, and joint pain.

I also have flare-ups every few months that last a few weeks at a time and prevent me from working. They include intense fatigue, nausea/low appetite, worse brain fog, worse joint/nerve/body pain, flushing and chills, and weirdly, strange-smelling urine lol. There are no triggers that I can detect, and my doctor doesn't think MCAS makes sense but that might be wrong. I take lots of covid precautions and test negative during these episodes, so I'm pretty sure these are not reinfections, but they feel similar and I do work at a school (masked).

After the most recent flareup, my (pretty understanding) doctor diagnosed me with fibromyalgia and suggested cymbalta and PT, and also is supportive of me taking time off. Thus, I'm wondering the following:

• I was offered wellbutrin or cymbalta, and he also agreed to prescribe LDN if I want. He was pushing the first two much harder, but I've had terrible reactions to multiple types of antidepressants before, so I'm very leery of SSNIs/SSRIs. They gave me crazy anhedonia, I slept 12-16 hours/day, completely lost my appetite, and took months to come off it each time. Is it worth trying cymbalta to show that I'm cooperative and will take his advice, or should I start with LDN, which I've heard largely positive things about and have a sense will be more helpful for me?
• I'm also considering taking medical leave, which my doctor would provide documentation for. I have enough leave time for a full month, and I'm tempted to take the full amount, try radical rest, get in good routines, try different medicines and supplements, etc. I would not be able to reduce my schedule, I would just end up having to make up the work on the days I go in. I feel really bad leaving my coteacher in that position and it would be hard going back but I am so tired of living like this and don't want the cycle to go on forever. I could potentially also quit my job entirely and live off savings for up to a few months but that feels much riskier. Is a month enough to improve and go back to my work?
• My doctor also wants me to start physical therapy if I go on leave, specifically aquatic therapy in a pool. This sounds really nice but the only options around me are in indoor pools and I don't want to get reinfected lol. I also do get some PEM, but I see the arguments for gradually testing and increasing my threshold. Are there other forms of PT I could put forward that would be manageable?
• My partner and I recently got married and having kids is a possibility we're open to in the near future. I've seen that a lot of people's LC symptoms improve, often permanently, during/after pregnancy. I imagine it makes more sense to try different medications first, or maybe we should just give it a shot?
• Finally, I have a family member who's very into alternative medicine and is generously willing to help me pay to see an alternative/functional medicine practitioner. I'm open to it but not sure whether to start with my local (very expensive) integrative wellness center, a Chinese medicine practitioner (acupuncture so far hasn't helped), to ask my doctor for a referral to the nearest long covid clinic to me (in a city 3ish hours away), or to use an online LC clinic like RTHM. Did anyone have success working with any of these sorts of providers?

TYIA!!

Hey all,

We, the Aranet team, are going to a International Society for Long COVID and Post-Acute Infection Syndromes conference next week, and we'll be sitting down with a couple researchers and clinicians for interviews.
To make the most out of it, I'd love to ask questions that are relevant for you.

The first interviewee will be Dr. Rae Duncan. She is a Consultant Cardiologist and Long Covid Research Clinician treating older children (16+) and adults, with a particular focus on cardiovascular complications following Covid-19 infection.
You're welcome to write your questions here until Sunday and we'll try to get you the answers!
Thanks!

As an example one thing I now have that I didn't have before (or didn't notice it whatsoever) is arthritis in quite a few of my joints now.

Also it feels like covid aged me instantly. I feel like a decade older

Some blurry vision also. Since I had covid I've been to 2 different optometrist and 3 different ophthalmologist and they all say they have patients with weird vision stuff after having covid.

Curious of what others have experienced

I don’t think I’m strong enough for this shit. It gets to a point. This is too much.

Just got this RX from my LC provider. Supposed to help with PEM and my ME/CFS symptoms. Starting at 30mg twice a day.

Anyone else on this or have tried it?

I'm (73f) going on seven months since covid. I know this extreme fatigue is common. But is equilibrium being off another symptom? I constantly feel like I'm walking drunk or on a boat...without the fun. Is this common?

I’ve been trying to be responsible and get things checked out, but I’m starting to wonder whether all these appointments, calls, urgent care visits and attempts to get labs ordered are actually helping — or whether I’m exhausting myself when what I really need is rest and time.
I saw my cardiologist, who basically told me that my previous cardiac testing was reassuring, to hydrate, give my body time to recover, stop constantly watching my Apple Watch, and reassess in about a month if the heart-rate issue continues.
I also tried urgent care and, after a huge amount of time and energy, I really didn’t get much help.
My first appointment with a Long COVID clinic isn’t until October, so I’m trying to get some answers and make sure I’m doing the right things in the meantime.
I’m seeing my primary care doctor next and am considering asking for basic labs to rule out other causes of the fatigue/HR symptoms, plus Sjögren’s markers because the dry mouth and eyes have become pretty significant.
For those further along in recovery:
Were all the appointments and testing actually worthwhile?
Are there any specific labs that were genuinely useful or that you wish you had asked for earlier?
Did your doctors find anything actionable, or did everything come back normal and you ultimately just need time, hydration and pacing?
And how did you balance getting appropriately evaluated with not using all of your limited energy chasing medical appointments?
I don’t want to ignore something important, but I’m realizing that trying to get answers is taking a lot of energy that I could be using to recover.

I think this plays a bigger role than we realize or want to admit. Especially those of us still trying to improve our condition.

Does anyone have personal experience with this or know the scientific basis behind it? I would also be curious if anyone contributes not being on there phone as an asset in there recovery?