19 votes

Anyone else have long covid?

I'm a longtime lurker and I haven't yet seen a discussion thread on lived experiences with long covid. I'm assuming I'm not alone and am wondering if anyone could share their experiences and tips for recovery.

Right now I feel like the world is closing in around me. I'm in month four. The symptom I am struggling with the most is an inability to do physical exertion, which triggers a range of debilitating symptoms that last for up to a week. Unlike most long covid sufferers, I get post exercise symptoms immediately after I do activity (others seem to get theirs 24-48 hours after). This is great for knowing my triggers, but I am finding that the trigger threshold is rapidly decreasing over time. In the first month (the month after infection) I discovered I couldn't manage a casual walk. In the second, I found I could walk for around 5 - 10 minutes at a time, but slowly. In the third, I had to stop leaving the house entirely. Two weeks ago, I started having trouble doing my washing and chores. This week I'm struggling with showering and moving up the stairs to where I work/sleep. I don't know if I've hit rock bottom yet and it's pretty scary. I'm going through the process of suspending and reducing my work responsibilities drastically. All the plans I have for the future and progress I had made towards a promotion are off the cards.

I was not terribly active before Covid, but I know about pacing so have been trying to take it easy. I also have had chronic illness over the past decade, so I am very familiar with how mystery illnesses are generally treated in conventional medicine. I also understand those who have pre-existing conditions who see that long Covid is getting a lot more attention (and therefore funding) than before. I hope that research comes out of long Covid will also help those who have these other neglected illnesses.

I've had to stop myself browsing the covidlonghaulers subreddit because it can get depressing. But from what I have seen, many people tend to get worse in months 4-8 and then start to improve after a year. A lot of people seem to get better after 20 months, but there are those who are still long hauling after getting the virus in 2020. I know from experience that time in conjunction with many small cumulative efforts to promote well-being is an excellent remedy.

Has anyone had any success with getting through long covid? I am trying to focus on meditation, breathing exercises, resting, nutrition, and sleep hygiene. So far I haven't had any success am continuing on a downward spiral. I haven't yet tried fasting (e.g. the autophagy protocol), an anti-histamine diet (I'm on keto/anti inflammatory), or supplement regime (there are so many things to try that I don't know where to start).

My thoughts are with anyone else out there with long covid or other illnesses besides, and I hope to hear from you.

9 comments

  1. [3]
    Bearskin
    Link
    I felt fatigued for a few weeks and did not realize that it was Covid. Walking felt more difficult and being noticably out of breath was not great. Suddenly, intense leg pain set in with a 105°...

    I felt fatigued for a few weeks and did not realize that it was Covid. Walking felt more difficult and being noticably out of breath was not great. Suddenly, intense leg pain set in with a 105° fever. It hit like a truck, and I can't imagine dealing with that without a vaccine and several boosters.

    It feels like 80% of my sense of smell is gone, and that leg pain is still there when I wake up in the morning. No big deal to walk it off, but there is undoubtably some nerve damage involved. Fingers crossed that clears up and my sense of smell returns over time. BA.5 is not to be trifled with.

    6 votes
    1. [2]
      Eidolon
      Link Parent
      I was in the optimal period for booster vaccine effectiveness when I caught Covid, so I can't imagine how I would have fared if I wasn't vaccinated. From what I have seen there is evidence of...

      I was in the optimal period for booster vaccine effectiveness when I caught Covid, so I can't imagine how I would have fared if I wasn't vaccinated. From what I have seen there is evidence of nerve damage and studies which show that vagal nerve stimulation helps - but it seems to resolve over time. Hope you start to see improvements soon.

      2 votes
      1. Bearskin
        (edited )
        Link Parent
        Your comment sent me down a vagus nerve stimulation rabbit hole. There's almost no chance of using it for my legs unless the situation were to deteriorate and become dire. However, as a possible...

        Your comment sent me down a vagus nerve stimulation rabbit hole. There's almost no chance of using it for my legs unless the situation were to deteriorate and become dire. However, as a possible treatment for major depressive disorder, the idea of getting zapped for temporary relief is appealing. Thanks for the heads-up.

        1 vote
  2. [2]
    rosco
    Link
    Thank you for posting this. I'm so sorry to hear what you're experiencing. Your experience is incredibly helpful for me to read even though I did not get long covid. It took me about a month to...

    Thank you for posting this. I'm so sorry to hear what you're experiencing.

    Your experience is incredibly helpful for me to read even though I did not get long covid. It took me about a month to start feeling normal again and I get heart palpitations every now and then even 3 months later. I wondered if this was a sign of long covid but after reading your write up I see just how different long covid is.

    Thanks for drawing attention to this!

    5 votes
    1. Eidolon
      Link Parent
      I think it's quite common to get lasting effects from the virus, as a month is the usual recovery time. But long covid does seem to be quite obvious. Only as time goes on and things get a lot...

      I think it's quite common to get lasting effects from the virus, as a month is the usual recovery time. But long covid does seem to be quite obvious. Only as time goes on and things get a lot worse does it become more clear. I'm glad you seem to have escaped it!

      1 vote
  3. [4]
    HotPants
    Link
    I am sorry you are going through this. Your symptoms sound like long COVID, but they also sound a lot like a severe form of Celiacs. There is a simple blood test that can diagnose Celiacs. It's a...

    I am sorry you are going through this.

    Your symptoms sound like long COVID, but they also sound a lot like a severe form of Celiacs. There is a simple blood test that can diagnose Celiacs. It's a low probability, but if you have Celiacs, then you can avoid food with glutens (unfortunately that means almost any food with artificial flavor) and it will make a world of difference.

    3 votes
    1. [3]
      Eidolon
      Link Parent
      Celiac disease is in my family and I suspect I have non-celiac gluten sensitivity. I am currently on a GF diet. I've been tested in the past but should probably re-test!

      Celiac disease is in my family and I suspect I have non-celiac gluten sensitivity. I am currently on a GF diet. I've been tested in the past but should probably re-test!

      2 votes
      1. HotPants
        Link Parent
        I'm not sure how familiar you are with Celiacs, as your family might have a mild or severe form of the disease. You might be dealing with both long COVID & Celiacs at the same time. Celiacs can...

        I'm not sure how familiar you are with Celiacs, as your family might have a mild or severe form of the disease.

        You might be dealing with both long COVID & Celiacs at the same time.

        Celiacs can apparently also be exacerbated by stress.

        A gluten free diet is very hard. Most sauces and dressings contain small amounts of gluten.

        Even the smallest amount of gluten (10 milligrams) can cause damage to the villi and can bring on the symptoms you are describing.

        Those with a severe case of Celiacs are careful to have separate food preparation surfaces for gluten and non gluten sensitive family members, and are extremely careful when ordering food from restaurants.

        The blood test does give false negatives, so only an upper endoscopy will tell you for sure.

        3 votes
      2. moocow1452
        Link Parent
        Could be that your immune system pretty much did an audit and any sensitivities that your body was able to compensate for aren't able to be worked around anymore.

        Could be that your immune system pretty much did an audit and any sensitivities that your body was able to compensate for aren't able to be worked around anymore.

        2 votes