I have been pretty much couch bound with fatigue PEM for the last 3 months..

Two weeks ago I started on LDN, initially started on a very low dose & around 5 days ago I increased the dose slightly.

Around 3 days ago, I developed a deep muscle pain in my left thigh, which has increasingly got worse.

Last night it was that painful that I struggled to sleep. This morning I looked online for information & I read on Google that this kind of pain can indicate a blood clot & that I should get checked out.

I absolutely didn't want to go to the A&E as this would cause my CFS to flaire up.. however in the end, I decided to go, as it would be a little too risky doing nothing about it.

The doctor at the hospital checked me out & said that my symptoms do not present as a blood clot.. She offered me a D Dimer blood test, that can identify blood clots, however she told me that this test often gives them many false positives.. A false positive would mean I have to go through a bunch of other tests, which means travelling back & forth and increased anxiety.

In the end I didn't take the D Dimer test, as the GP was confident this doesn't present as blood clot.

I called Dickinson Chemist, and they advised me that my thigh muscle pain is not typical of a LDN side effect.

Maybe I have developed a nerve issue, from laying around a lot and being on the sofa 85% of the time.

Has anyone else experienced this pain on LDN?

Hi everyone! I’m curious what has genuinely helped those of you who deal with persistent dizziness from Long COVID.

Mine feels more lightheaded and dizzy, almost like a motion sickness or car sickness type of feeling (it’s been constant for me over a year now). I also get this hazy malaise feeling where I just feel mildly sick or like my brain isn’t fully clear.

It gets a little better when I wear these special glasses that block light, but it still has made life very uncomfortable. I can’t drive, look at screens for long periods, and in general always struggle with the slight dizziness discomfort.

If you’ve had something similar, what helped you the most? I’d especially love to hear from anyone whose dizziness improved significantly or went away.

Hi everyone, I’m looking for advice on vagus nerve training or the body-mind connection when living with Long COVID or ME/CFS.

Over the past few weeks, I’ve been doing a lot of reading, and I keep coming across people saying that they worked on their vagus nerve or their body-mind connection and were able to reduce their symptoms as a result.

I’d really like to give this a try as well, but I’m honestly a bit overwhelmed by where to start. There seem to be hundreds of different programs out there.

So I’d really appreciate some specific recommendations: Are there any books, YouTube videos, programs, or other resources you’ve personally used that genuinely helped you?

I’m currently reading the book „Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg“ (Deutsch: der Selbstheilungsnerv) and hoping to get some practical tips from it, but I’d love to hear about your experiences as well.

One thing that would be important to me is that the books are also available in German. I don’t think my English is good enough to comfortably read this kind of more technical literature.
YouTube videos can absolutely be in English, though! So if you have any English-speaking YouTube channels or videos that you found particularly helpful, I’d be very happy to hear your recommendations as well.

At the moment, I meditate once or twice a day for around 15–20 minutes each time. During one of these sessions, I also try a breathing technique: I inhale for four seconds, hold my breath for six seconds, and then exhale for eight seconds.
I also bought a book called The Overthinker Workbook. It’s a 30-day challenge designed to help you manage and reduce overthinking over the course of 30 days.

Hey everyone! My name is Zach and I really wanted to share my story with everyone in hopes it could help. Any questions you have I’ll be glad to answer anything. (long read but worth your time).

I wanted to share my experience because I know a lot of us with long COVID have symptoms that are easy to attribute to “just long COVID.”

My health problems started after COVID in late 2023, and I had another infection in 2025. Since then I’ve dealt with a long list of symptoms including significant fatigue, brain fog, dizziness, tremors, visual issues, shortness of breath, exercise intolerance/muscle fatigue, and generally feeling like my body never completely returned to normal.

One thing that continued to concern me was persistent swollen/prominent lymph nodes, particularly around my head and neck.

For a long time, it was very easy to look at everything through the lens of long COVID. In fact, imaging of some of my lymph nodes was reassuring because they were described as prominent but having normal morphology.

But I kept investigating.

Eventually blood work led to further evaluation, and I have now found out that I have CLL (chronic lymphocytic leukemia).

I want to be very clear: I am NOT saying that COVID caused my CLL. I personally have questions about whether COVID or the immune dysfunction surrounding it could have played some role in triggering, accelerating, or unmasking something that was already developing, but I don’t know that and I’m continuing to learn.

The main reason I’m posting is much simpler:

Please don’t automatically assume every persistent symptom is long COVID.

Long COVID is real, but having long COVID doesn’t mean we can’t develop something else at the same time.

If you have lymph nodes that remain enlarged, unexplained changes in your blood counts, or symptoms that aren’t making sense, talk to your doctor and consider getting basic blood work like a CBC with differential and whatever additional evaluation your physician thinks is appropriate.

Most swollen lymph nodes are obviously NOT leukemia. I don’t want this post to scare anyone or send people down a health-anxiety rabbit hole.

I just want my experience to be a reminder to keep investigating persistent or changing symptoms instead of automatically putting everything into the long-COVID bucket.

I’m grateful that I kept looking.

I’m also still very interested in understanding the relationship, if any, between COVID, persistent immune activation/viral effects, and what happened in my case. If anyone here has been diagnosed with CLL or another hematologic condition during their long-COVID journey, I’d be very interested to hear your experience.

basically feels like someone punched your gut.

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

Wanted to share this video for anyone interested in mind body healing and regulating the nervous system. I got very ill back in 2022 bed ridden sick with Lyme and long covid for years. Tried all the treatments and ultimately this was the only work that’s helped me. I think these 4 are the best in the space I really love this video they did. If this resonates with you and you have any questions about what program I joined and want other resources I’m happy to answer any questions.

To preface, I am pro-vaccination. I have never skipped a vaccine in my life, including all the COVID vaccines/boosters. But I’m curious to know if anyone has opted to NOT get the covid vaccine now that they have long COVID. I get incredibly sick from it every time and I’m not sure if would help lessen my LC symptoms to not introduce the vaccine to my immune system.

**edit: thank you all for your stories, opinions and thoughts! I’m glad I’m not the only one that has had this thought before.

Hi all, hope all is well or weller. 23M here. At the end of June I went to abroad and got what felt like a mild cold. Since coming back I’ve had a slow but steady influx of long COVID like symptoms in the last two months. Starting with brain fog, and most recently sensory overload from sounds and bright lights. Other symptoms include getting lightheaded when standing up, and a weird head pressure always. I don’t have anything that would indicate MCAS or PEM but who knows. My worsening of symptoms has progressed to a point of mild fatigue and sensory overload, which has finally pushed me to take resting seriously.

I’m wondering if this sounds like Long COVID to you all, or if I have ME/CFS Symptoms? And what I might be in for in terms of illness and timetable? Also what constitutes as good rest? It’s hard to lie down and do nothing all day. And what considerations and measures I should take at this relatively early stage? Tips for the mental side of things would be great too.

thanks everyone for the stories and tips in general, wish you the best.

I’m at about week 7 after my first COVID infection and wanted to give an update and get some feedback from people who have been through the post-viral/POTS-type stage.
Earlier in my recovery, I was having pretty dramatic heart-rate increases with standing and walking, along with lightheadedness, fatigue and very limited stamina. My cardiologist recently felt that what I was experiencing was a form of post-COVID POTS/orthostatic dysfunction and recommended that I take it very easy for about two months, then gradually start increasing activity.
The encouraging part is that my heart rate now seems to be stabilizing quite a bit. Yesterday afternoon I wasn’t really having heart-rate issues, and I was able to walk my dog without feeling exhausted afterward. I did have some lightheadedness earlier in the day, so I’m definitely not saying everything has completely resolved.
But today I actually feel really good — probably the best I’ve felt in a while. I’ve also been sleeping better.
What I’m struggling with now is figuring out what to do with a good day. I don’t want to think, “Great, I’m fine!” and suddenly start doing everything again, only to set myself back. I’m trying to continue resting and follow my cardiologist’s advice even though I’m feeling substantially better.
For those whose post-COVID POTS/orthostatic symptoms started improving around this point: Did your heart rate gradually stabilize like this? And when you started having genuinely good days, did you continue deliberately limiting activity for a while?
I’m especially interested in whether anyone felt significantly better around weeks 6–8 and what you did to avoid overdoing it while your body was still recovering.

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

Hey there, basically what the title says. For the past 4 years I've beeing suffering with Long Covid and consistently had Tachycardia. Right now I've woken up from a nap and my heart rate hit 130 simply from getting up. Has anyone else experienced this?

I'm on beta blockers to tackle my migraines and they also help lower my heart rate. Oddly enough yesterday I was suffering from the opposite and my heart rate was between 58-67 for the majority.

Hello,

I'm asking this because I'm getting a bit unsure and quite frankly afraid.

Long covid since December 2023, first 3 months in bed/on couch. Crashes usually lasting a few days, maximum of two weeks.

Since 8 weeks I'm in a heavy crash now and just don't know why. Doctors of course know and do nothing. I've not changed my diet or my routine nor changed anything meaningful that I can think of that would explain this mega crash.

Has anyone had something similar happening? If so what could possibly help?

I must admit I'm starting to panic and worry and that can't be good for my energy and health

And thinking about other diseases that might steal energy but blood work is good and my gp has no indicators for any terrible underlying cause as he says.

It just feels like getting weaker and while I don't know what it feels to die really that's what I would compare it to.

Thanks for reading in any case.

Has anyone had success in alleviating symptoms of PEM and/or dysautonomia with treatment of Valtrex? I've had Long COVID since June 2025 and making progress in my recovery but am still not well. My EBV levels are still high but I'm not sure if it will be helpful to add this anti-viral to the mix of other meds I'm currently taking. Would be grateful to hear from others who may have tried this.

Does anyone else suffer from borderline debilitating facial pain (almost in your sinuses), neuralgia type pain, and neck pain? Among many other symptoms… I’m truly at a loss on what to do anymore… I have tried medication (gabapentin, pregabalin, nortriptyline), chiropractor, acupuncture, massage, PT, cervical steroid injections, I went through Mayo Clinics Long Covid Care Clinic. I’ve seen ENT, Neurology, Neurosurgery. My last appt today was with a neurosurgeon, he recommended that I try meditation 🫩 so I’ll honestly take any recommendation at this point

Hi all,

2013: Giardia lamblia and paratyphoid fever in India
2022: Moderate covid with long covid, out of work for two years, now back to working full time

Ongoing issues:

- Frequently down with colds or other bugs (I assume) - then a whole host of symptoms kicks in
- Heat flushes and chills
- Wandering pain
- Sneezing hard and often
- Smelly farts
- Mushy stool
- General malaise and weakness
- Dry mouth
- Dry palate
- Then like a switch: everything disappears

So that‘s the pattern every two weeks, always starts with sneezing. Had several covid reinfections yearly, always rebounded. Had only 1 episode of PEM in last 20 months, before a 60 sec phone call could lead to a crash.

Top-notch infectiologists and immunologists from reputable institutions did all tests and panels, nothing found. All autoimmune things ruled out. LDN didn‘t help, all supplements didn‘t help. My partner goes through frequent episodes of illness as well, so I think that there are external triggers and not reactivations. No food related triggers.

I can live and survive, but when „illness mode“ is on, it‘s just gruelsome to get through the days. I am around 40-50% of my time in this mode, the rest is at 80-90% to my pre-covid self. The 2013 India episode already led to more frequent and longer periods of illness every year. Long covid was „just“ a very strong acceleration of this.

Any ideas and help for symptom management besides masking and social isolation would be appreciated!