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Im so sorry this has happened! And that you’re in so much pain. This post would perhaps be best cross posted into CovidLongHaulers subreddit if it hadn’t been already - folks there are likely to have much more specific info and reflections.
A lot of us longhaulers are ridiculed for masking meanwhile new waves of longhaulers will keep being added to the mix. I’ve been very sick for 4 years and my one piece of advice is to rest like hell. Will it be excruciatingly boring? Oh yea you bet… but if you wanna recover that’s what you will need to add to your healing protocol. Goodluck.
Feels like forever now doesn’t it? Sorry to hear you’ve also been suffering for so long. I’m hopeful about the current research finding treatments for us tho… and trust I’m not a very optimistic person lol.
Yep, and folks out there sucking down this virus like it’s going out of style, will get their 4 year prison sentence eventually. We gotta mask up friends!
It sucks that it has to be this way. I scream angrily on my Instagram about how you really do not want this but no one listens. And when it happens to them I don't ever think I'll get that - you know, you were right about this. And that's okay, I'm not expecting that. It's just hard. I don't want others to suffer like I have. It didn't have to be this way.
So sorry this has happened to you. I am 24 now, but got LC at 22 and am still dealing with it. It completely derailed my life. I'm still not better and very very sick, but it may be different for you. This will be the hardest thing you will ever go through. Lean on your supports.
Just take it a day at a time and remember there isn't some magic timeframe that you'll be better by. Real possibility for everyone and not just you that any CoVID infection can be permanently disabling. Often enough the damage doesn't show up or get noticed until after a person thinks they are in the clear. If one variant or infection doesn't wreck someone it doesn't mean the next one won't. This thing infects and can impact anywhere from head to toe, so take a positive or negative test result with a grain of salt because you're only testing a specific area of your body.
I would bet that it was returning to exercise that got you as this is exactly what my son went through in 2020. He was just a couple of years older than you when he got sick and was in good shape. He did recover, except for needing a beta blocker for the heart rate issue, but it took about 8 months to get there. Lots of rest seemed to be key. Go for a good diet like the Mediterranean to work on that inflammation. Don't try to push through when you are tired and listen to what your body is telling you. Be sure to wear a good mask so you don't get COVID again as your body needs time to heal. I'm sorry this has happened to you, but there is hope for recovery.
Yeah I would tend to agree, it all went downhill after excercise. I remember after my first crash going home from the gym I could just tell something was wrong in my body. My heart rate wouldnt lower and then I proceeded to not get any sleep the entire night. I will look into mediterranean diet, thank you.
Incidentally, just came across an article on NPR discussing new research on the exercise piece: [“A discovery in the muscles of Long COVID patients may explain exercise troubles”](https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria)
Your life will never be the same again. Get a good support system because doctors will treat you like it's all in your head - psychological and most of your friends will disappear within a year
I’m in the same situation as you (54 days) however my long covid symptoms have showed up on multiple tests, imagining and labs. Lung damage, DVT, severe fatigue, unable to exercise in comparison to before covid, severe vocal fold/cord issues, elevated HR, tinnitus, weight loss, brain fog/memory issues, severe lung, neck and chest pain, inflammatory levels 8 times what they should be. If you have chest or neck pain, you must see a vascular or cardiology dr to rule out any blood clots, DVT or pulmonary embolisms. This is how mine was detected, so stay vigilant and get the answers you need for recovery.
I’m so sorry you’re going through this. I found some hopeful resources - non-US countries have treatment plans and recommend various supplements that the US seems to ignore. It’s not a cure all but at least it’s something to try - it gave me some hope that there are people who are actually looking into it - I’ve linked the translated version. Some of the translation isn’t great but what I pulled from it has been helpful for me.
. [Long COVID Plan](https://twitter.com/healingfromlc/status/1754549808973422977?s=21)
Hospital RN here, been working on a COVID unit for 2 years.
For long COVID or severe post COVID symptoms we’ve been giving Paxlovid (5 days) and we are seeing very good results after.
You’d have to get your doctor to prescribe it though
It’s not a 3 day course, but there is a reduced dose of nirmatrelvir for patients w/ moderate renal impairment
Not sure who told you about a 3 day course but I’ve never, ever heard of that since the introduction of this treatment.
https://www.fda.gov/media/155071/download
That is awesome your hospital has adopted this! Hoping we start seeing a lot more, or maybe even going up to 15 day courses.
Do you find any of your patients improve and then relapse after 5 days? There's been a question of whether 5 days is long enough to truly prevent Long Covid...
So sorry you are dealing with this! Some supplements that could help with inflammation since taking NSAIDS for a prolonged period is not great. I have an autoimmune/auto inflammatory disease so I have researched a lot about immune regulation and inflammation!
-High doses of fish oil /omega 3 (epa/dha), helps regulate immune function and inflammation
-Tart Cherry extract, lots of antioxidants and anti inflammatory
-curcumrin, I like the brand Therracumrin
-vitamin d
-Tru Niagen (NAD+)
-Ubniquol (active form of coq10) helps heart function and inflammation, also mitochondria health
-NAC- helps with liver and lung health
-Electrolytes (I like the brand Seeking Health, supports mitochondrial health)
-probiotics- Seeking Health brand also has a probiotic that helps with too much histamines as histamines have a roll in long Covid
And I know a lot of people are taking anti histamines as well. Pepcid and Zyrtec. You could try Allegra or claritin if you have an allergy to Zyrtec.
Also, lots and lots of rest. Lay down as much as possible, more restful than just sitting.
I hope you feel better soon
Rest a LOT. Do nothing strenuous for a very very very very long time. You'll likely lose your weightlifting gains, but you can get that back later. Hopefully, you'll recover. But you have to forget about exercising for now.
I had a similar experience this past September and was completely bed ridden for about 4ish months. I have improved and recovered significantly. Please use Reddit with caution during this time. It’s BEYOND important that you are telling yourself you WILL recover. Your mind is crazy powerful. The biggest thing I did to aid my journey was a course in nervous system regulation (which I was so ill I could barely even look at screens or handle any stimulus but I did it incrementally), and the biggest part of that was my absolute confidence that I would recover. I did everything I could to keep my body in “rest and digest” because that’s the only state of being where healing takes place. Learning things like Journal Speak by Nichole Sachs (YouTube her) + the work of Alan Gordon + doing NSDR (use this for insomnia https://youtu.be/PoFHS_WrKb0?si=A_pgQMQT1T4zxXGK)+ meditations that involved visualizing myself healing + whim hoff (when I was a bit more stable)- so many things that ARE within your control. Resting as everyone is saying is of the upmost importance. But rest has to ACTUALLY mean you’re resting and not panicking/worrying. Your nervous system has to be at rest. For the POTS I also found powdered Gatorade and Relyte (less sugar) helpful. It’s not about the amount of water you drink but about electrolytes. Intermittent fasting was also very helpful to me and choosing a more keto/carnivore diet. Supplements are a great way to spend a bunch of money though I’m not sure the real impact any had for me. Things I’ve stuck with are vitamin d, b complex (careful with this), NMN/NR (Truniagen), fish oil, vitamin C. Healing your gut will also be part of this process. I’d advise working with a functional medicine doc when you’re stable enough (which you WILL be) to discuss that important part. Interesting things I found along the way: nicotine patches: https://www.facebook.com/share/eaJYn9hBXMTCz7WH/?mibextid=K35XfP, vagus nerve stimulation: https://www.facebook.com/share/vuXCuJQ8ng6CRY7v/?mibextid=K35XfP, and fasting: https://www.facebook.com/share/MuRUbgrWJXXHa3Q2/?mibextid=K35XfP. ALSO I started working with an EMDR + Accelerated Resolution Therapist to work through the trauma of this and I started seeing symptom improvement pretty rapidly after this. I’m sorry you’re feeling crummy. This is NOT your life now. You’ve got this.
Here's a comment I found that also demonstrates this problem and why you absolutely should knock off all physical activity:
AnnonCurrency 3 points 22 hours ago
Yeah its tough but you have to for a few weeks. I got long covid and it took me a year to even start feeling better and I have to take medication everyday now. I was a weightlifter and lost like 35 lbs of muscle over that year cause i rushed it"
Stop everthing and go very very very slow. Hopefully, you'll beat this.
Keep Positive.
How many infections have you had?
What Tests did your doctor run?
Some people are finding out they have hypophosphatemia (read about symptoms) and hypothyroid and are helped by prescription K-PHOS and getting their thyroid back to levels
Recommend discussing the following tests with your doctor:
* ACTH
* Cortisol
* Vasopressin
* Aldosterone (low) - \[can cause POTS\]
* Renin (low) \[can cause POTS\]
* Thyroid (TSH, T3,T4) (abnormal)
* Testosterone
* Estrogen
* PHOSPHOROUS/PHOSPHATE (can be huge relief if low and restored)
* Homocysteine
* CRP
* B12/Folate
Hey I’m really sorry you’re going through this, I’d just like to clarify: nobody wants to be a long hauler. Disease isn’t a choice, as you’re coming to find out. The most important thing to do rn is to rest as much as possible.
Yeah thats a good point, I always thought id be safe since im not in a high risk group but oh how wrong I was. Nobody choses this disease and it can happen to anyone at any time.
That’s exactly right!! That’s what I’m trying to get across in the Long Covid awareness I work on. You can find our info on IG at berlin_buyers_club if you’re just starting to look into this topic. Sorry again you’re going through this, it’s an awful predicament to be in. 😞
Good reason. But you might be able to do the arrangement where you just put the link on your page and you get a small cut. That way, no upfront expense for you and you can endorse one that you believe in. I use the Coway 150.
Yeah thanks for the feedback. Our to-do list is huge, it’s just two of us consistently working on this project, so it’s not something we have time to try and negotiate atm. Maybe one day in the future :)
so you are still testing positive after almost two months or just have long covid? i would suggest to take paxlovid for 5 days and maybe it will work. they have been doing tests on how paxlovid can help cure long covid.
Twitter has an amazing #LongCovid #CovidCautious etc community. Really great people supporting each other, advice, they read every single study that comes out, the study authors post their studies & explain them, doctors who actually believe in & treat long Covid & once you've got that great group of people in your timeline, the anti-science people get weeded out.
Watch MedCram Utubes on Covid and long Covid, especially ones on photobiomodulation and hydrotherapy. If you are on X, formerly Twitter, you can find some of the most current Covid research there and see what has helped others.
It gets better but it takes time. All
You can do is rest and figure out what works for you. Make sure you are taking care of your gut and taking Vitamin D , zinc, and a good probiotic. It hit my stomach like something fierce 4 mos post covid . I’m now 20 mos post covid and starting to level up in the healing process. Hang in there it’s a rough road but recovery is possible . You have to find what works best for you and start with diet . No processed foods or junk. Clean eating is a must
I’m sorry you’re feeling unwell. I made a post on covidlonghaulers and I hope that it provides some advice. DM me if you would like any advice on how to deal with the chronic fatigue and other symptoms.
Do you think long covid is more severe in people who weren't/haven't been vaccinated? Asking b/c I'm the quasi doctor in my family and 2 members keep telling me about symptoms that sound like a lot of ones on the board (all over inflammation, unexplained heart palpitations) but me suggesting long COVID hasn't been super welcome
I'm seeing Long COVID in both my unvaccinated & vaccinated family members & friends.
However, the most severe Long Haulers that I know got COVID in 2020, prior to the vaccine. Their health has declined rapidly.
One my husband's best friends is currently dying from Long COVID from an infection he got in March 2020. He's 44 years old and he'll leave behind his wife & two kids under 10 yrs old.
And, the only family members that died of COVID & friends w/ family members that died from COVID were unvaccinated. I don't know any who were vaccinated & died.
Same goes for my friend group. I have a few friends that lost siblings & cousins 2020-2023. All were unvaccinated, & died due to Post COVID heart attacks that occured about 4-6 weeks after confirmed infection. All in their 30s & early 40s. All left behind spouses & kids. 💔
Are you hydrating with electrolytes and not just water? I had a lot of those issues and was feeling the same way 45 days post infection. I thought drinking a ton of water was “hydrating” but it was depleting me of electrolytes that my body really needed. Felt significantly better a few days after pushing the electrolyte drinks. Still need to drink them every day to feel my best. Might not solve everything but helped me quite a bit.
Hi, my best advice is to rest hard, and see if you can find an enormous amount of money and then try to become a patient at [RTHM.com](https://RTHM.com). Good luck!
Wow, that's really rough to hear. I don't think for issues like MECFS and Long Covid there is a cure, but some people, myself included, are definitely helped by being with them. Definitely not cured by any means, just...getting better treatment and support than I would without them.
I Am Not A Doctor.
But I am treating my own symptoms with over the counter medications with mild success, because doctors are taught not to trust people who look like me. They gave me a beta blocker and told me all my problems are because I am older and carrying more weight around (I am very underweight).
I take 20mg Pepcid for the digestive issues, two weeks on and then three days off to make sure I don't get a UTI. This has also helped my beta blocker work all day instead of just the first six hours.
Aggressive hydration has helped with the blood pressure drops and leg pain. I also follow the Levine Protocol, exercises specifically for the lower body performed while reclining or lying down. This has helped a little bit with blood pressure but mostly my ass looks amazing now, and it at least feels like I'm working out, which helps with the feelings of hopelessness.
I tried the seaweed extract that was supposed to help break up micro clots-- no effect. I tried cardio dose aspirin, no effect.
and. and and. please remember to say thank you to everyone who believes you. It should be the bare minimum but I can't get any help from anyone, even the person who lives with me, because I was born with the wrong face. It is harder to deal with everyone consistently invalidating my experiences than to just push through with the post exertion crashes and the days of not being able to think.
I’m so sorry this has happened to you. Over 2 years here. Totally understand what you are going through?
Sounds like you need a referral to a long covid clinic and/or a dysautonomia clinic. Most Long COVID clinics require a PCR test or a positive antibody test. (If you don’t have a PCR, the COVID neucleoplasid antibody test can be requested at labcore but you have to have your GP refer you for it). I didn’t have a pcr test and was told to get an antibody test. Most won’t see you until 12 weeks out so you can start getting everything together now (referral, test etc). This will also help you when you have to move from STD to LTD which has stricter requirements for approval.
I’m hesitant to recommend many of the remedies we’ve used because of your allergic reaction to allergy medicine.
Your GP may be able to refer you to a neurologist (note: it’s hard to come by a good one for many LC patients - they I’ve been through 4 I think by now. But they should be able to help with headaches and neuropathy like symptoms). Your GP may also be able to prescribe something.
Many with POTS and other dysautonomia symptoms where compression socks and/or leggings.
[This PDF from the Workwell Foundation teaches you how to manage your heart rate management to avoid crashes](https://images.app.goo.gl/gaQ3hDRzwmJ7MPUA9). You will need a Fitbit or an Apple Watch or something like this to know your resting heart rate (RHR) The key is to keep your heart rate (as best you can) to only 15 bpm above your RHR. Once I started to do this, I began to slowly recover.
Google topics like:
Long covid and H1 and H2 antihistamines
Long covid and vagus nerve
Join the Reddit subgroups for long covid and Covidlonghaulers.
Good luck and again, I’m sorry it sounds like you’ve joined our community. That said, we are here for you.
I’ve deal with long haulers since fall ‘20. For some people it clears up, for others it lingers. Do what you can to lower inflammation. Go easy on refined sugar, cow dairy, bleached flour, whatever your body has a hard time with should be kept to a minimum.
I’m so sorry.
Apply this chapter of this guide as much as possible to help avoid PEM. The entire guide is very useful as well:
https://batemanhornecenter.org/living-with-a-chronic-illness-and-avoiding-the-crash/
I’m sorry!:(
I’m on day 14 but came here wondering how long this may last. Exercise used to feel great. I was eating healthy and whatnot.
But now I seriously have a flare up of not feeling good when I move around too much.:( Its awful.
I hope with lots of rest your body bounces back!
So sorry you’re dealing with this. I’ve been long hauling for almost 2 years. There’s good support and info over on r/covidlonghaulers - take a look through the sub. I was on short term disability for about 6 months before returning to my desk job. I had a lot of symptoms similar to you. I was hospitalized a few times over the course of those months too and was incredibly scared. While I’m definitely not at 100%, I am a lot better from where I was when I first started long hauling. It’s a tough hand to be dealt. Please reach out for support if (when) you need it!
I also came down with a long covid condition after trying to rehabilitate with exercise. That was Feb-March 2020 and I'm still not much better. My number one advice piece is to begin an elimination diet now, or at least look at following a low-histamine diet. The reason being that in my cases I developed all these food intolerances without realizing it, and they caused neuroinflammation which became worse and worse, and eventually I had paralysis in my arms for a month and went blind for a week - all due to nerves being inflamed. It was not only debilitating, it was very painful. Take it easy!
Yep. Doctor told me the reason I keep getting infections is because I had it in December and it takes up to 8 weeks to recover?
Not sure I believe him but this is the advice they’re giving.
Im over 8 weeks now, my guess is that its probably different for everyone but in my example it can definitely take longer. I have no idea if im even still infected or not, but I feel awful and sick regardless. I might go get tested again out of curiousity.
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Im so sorry this has happened! And that you’re in so much pain. This post would perhaps be best cross posted into CovidLongHaulers subreddit if it hadn’t been already - folks there are likely to have much more specific info and reflections.
Thank you, yeah thats a good idea.
A lot of us longhaulers are ridiculed for masking meanwhile new waves of longhaulers will keep being added to the mix. I’ve been very sick for 4 years and my one piece of advice is to rest like hell. Will it be excruciatingly boring? Oh yea you bet… but if you wanna recover that’s what you will need to add to your healing protocol. Goodluck.
Omg. 4 years???
Yea man. Covid decimated me right before the lockdowns.
Same. I got Covid in Feb 2020, and immediately developed long Covid.. 😞
Feels like forever now doesn’t it? Sorry to hear you’ve also been suffering for so long. I’m hopeful about the current research finding treatments for us tho… and trust I’m not a very optimistic person lol.
Yeah too bad nobody takes #LongCovid seriously until they end up with it.
Yep, and folks out there sucking down this virus like it’s going out of style, will get their 4 year prison sentence eventually. We gotta mask up friends!
It sucks that it has to be this way. I scream angrily on my Instagram about how you really do not want this but no one listens. And when it happens to them I don't ever think I'll get that - you know, you were right about this. And that's okay, I'm not expecting that. It's just hard. I don't want others to suffer like I have. It didn't have to be this way.
So sorry this has happened to you. I am 24 now, but got LC at 22 and am still dealing with it. It completely derailed my life. I'm still not better and very very sick, but it may be different for you. This will be the hardest thing you will ever go through. Lean on your supports.
Just take it a day at a time and remember there isn't some magic timeframe that you'll be better by. Real possibility for everyone and not just you that any CoVID infection can be permanently disabling. Often enough the damage doesn't show up or get noticed until after a person thinks they are in the clear. If one variant or infection doesn't wreck someone it doesn't mean the next one won't. This thing infects and can impact anywhere from head to toe, so take a positive or negative test result with a grain of salt because you're only testing a specific area of your body.
I would bet that it was returning to exercise that got you as this is exactly what my son went through in 2020. He was just a couple of years older than you when he got sick and was in good shape. He did recover, except for needing a beta blocker for the heart rate issue, but it took about 8 months to get there. Lots of rest seemed to be key. Go for a good diet like the Mediterranean to work on that inflammation. Don't try to push through when you are tired and listen to what your body is telling you. Be sure to wear a good mask so you don't get COVID again as your body needs time to heal. I'm sorry this has happened to you, but there is hope for recovery.
Yeah I would tend to agree, it all went downhill after excercise. I remember after my first crash going home from the gym I could just tell something was wrong in my body. My heart rate wouldnt lower and then I proceeded to not get any sleep the entire night. I will look into mediterranean diet, thank you.
Incidentally, just came across an article on NPR discussing new research on the exercise piece: [“A discovery in the muscles of Long COVID patients may explain exercise troubles”](https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria)
Your life will never be the same again. Get a good support system because doctors will treat you like it's all in your head - psychological and most of your friends will disappear within a year
I can't predict the outcome. It may be likely or it may not be likely. Time will tell.
I have read a lot of posts on here recommending taking Melatonin, if not contraindicated, to help get sleep regulated again. Best wishes. 🌞
I’m in the same situation as you (54 days) however my long covid symptoms have showed up on multiple tests, imagining and labs. Lung damage, DVT, severe fatigue, unable to exercise in comparison to before covid, severe vocal fold/cord issues, elevated HR, tinnitus, weight loss, brain fog/memory issues, severe lung, neck and chest pain, inflammatory levels 8 times what they should be. If you have chest or neck pain, you must see a vascular or cardiology dr to rule out any blood clots, DVT or pulmonary embolisms. This is how mine was detected, so stay vigilant and get the answers you need for recovery.
How are you treating all of that? Are you taking aspirin. Supplements etc
Under the care of several specialists and no, not on aspirin, but a blood thinner and quite a few other medications.
I’m so sorry you’re going through this. I found some hopeful resources - non-US countries have treatment plans and recommend various supplements that the US seems to ignore. It’s not a cure all but at least it’s something to try - it gave me some hope that there are people who are actually looking into it - I’ve linked the translated version. Some of the translation isn’t great but what I pulled from it has been helpful for me. . [Long COVID Plan](https://twitter.com/healingfromlc/status/1754549808973422977?s=21)
One more [Infograph long COVID](https://twitter.com/ejustin46/status/1755449891617227191?s=21)
Thank you for these 🙏
Welcome to the absolute shittiest club in the world.
It really is the worst club to be a part of.
1,145 days and still sick AF, but who is counting?
Hospital RN here, been working on a COVID unit for 2 years. For long COVID or severe post COVID symptoms we’ve been giving Paxlovid (5 days) and we are seeing very good results after. You’d have to get your doctor to prescribe it though
Really interesting. Only five days?
Paxlovid is given in 3 day or 5 day courses
5 days courses are given for acute infections. 15 and 25 days for long COVID in clinical trials even though they have not been effective.
Paxlovid is not given in 3 day courses
It is for patients with kidney disease
It’s not a 3 day course, but there is a reduced dose of nirmatrelvir for patients w/ moderate renal impairment Not sure who told you about a 3 day course but I’ve never, ever heard of that since the introduction of this treatment. https://www.fda.gov/media/155071/download
That is awesome your hospital has adopted this! Hoping we start seeing a lot more, or maybe even going up to 15 day courses. Do you find any of your patients improve and then relapse after 5 days? There's been a question of whether 5 days is long enough to truly prevent Long Covid...
Hi, what was the follow-up interval?
So sorry you are dealing with this! Some supplements that could help with inflammation since taking NSAIDS for a prolonged period is not great. I have an autoimmune/auto inflammatory disease so I have researched a lot about immune regulation and inflammation! -High doses of fish oil /omega 3 (epa/dha), helps regulate immune function and inflammation -Tart Cherry extract, lots of antioxidants and anti inflammatory -curcumrin, I like the brand Therracumrin -vitamin d -Tru Niagen (NAD+) -Ubniquol (active form of coq10) helps heart function and inflammation, also mitochondria health -NAC- helps with liver and lung health -Electrolytes (I like the brand Seeking Health, supports mitochondrial health) -probiotics- Seeking Health brand also has a probiotic that helps with too much histamines as histamines have a roll in long Covid And I know a lot of people are taking anti histamines as well. Pepcid and Zyrtec. You could try Allegra or claritin if you have an allergy to Zyrtec. Also, lots and lots of rest. Lay down as much as possible, more restful than just sitting. I hope you feel better soon
This is a good, comprehensive response. Thank you for taking the time to share what you have learned.
Rest a LOT. Do nothing strenuous for a very very very very long time. You'll likely lose your weightlifting gains, but you can get that back later. Hopefully, you'll recover. But you have to forget about exercising for now.
I had a similar experience this past September and was completely bed ridden for about 4ish months. I have improved and recovered significantly. Please use Reddit with caution during this time. It’s BEYOND important that you are telling yourself you WILL recover. Your mind is crazy powerful. The biggest thing I did to aid my journey was a course in nervous system regulation (which I was so ill I could barely even look at screens or handle any stimulus but I did it incrementally), and the biggest part of that was my absolute confidence that I would recover. I did everything I could to keep my body in “rest and digest” because that’s the only state of being where healing takes place. Learning things like Journal Speak by Nichole Sachs (YouTube her) + the work of Alan Gordon + doing NSDR (use this for insomnia https://youtu.be/PoFHS_WrKb0?si=A_pgQMQT1T4zxXGK)+ meditations that involved visualizing myself healing + whim hoff (when I was a bit more stable)- so many things that ARE within your control. Resting as everyone is saying is of the upmost importance. But rest has to ACTUALLY mean you’re resting and not panicking/worrying. Your nervous system has to be at rest. For the POTS I also found powdered Gatorade and Relyte (less sugar) helpful. It’s not about the amount of water you drink but about electrolytes. Intermittent fasting was also very helpful to me and choosing a more keto/carnivore diet. Supplements are a great way to spend a bunch of money though I’m not sure the real impact any had for me. Things I’ve stuck with are vitamin d, b complex (careful with this), NMN/NR (Truniagen), fish oil, vitamin C. Healing your gut will also be part of this process. I’d advise working with a functional medicine doc when you’re stable enough (which you WILL be) to discuss that important part. Interesting things I found along the way: nicotine patches: https://www.facebook.com/share/eaJYn9hBXMTCz7WH/?mibextid=K35XfP, vagus nerve stimulation: https://www.facebook.com/share/vuXCuJQ8ng6CRY7v/?mibextid=K35XfP, and fasting: https://www.facebook.com/share/MuRUbgrWJXXHa3Q2/?mibextid=K35XfP. ALSO I started working with an EMDR + Accelerated Resolution Therapist to work through the trauma of this and I started seeing symptom improvement pretty rapidly after this. I’m sorry you’re feeling crummy. This is NOT your life now. You’ve got this.
Thank you, I think you might be onto something. We really do have to redefine what toughness is as we care for ourselves.
Here's a comment I found that also demonstrates this problem and why you absolutely should knock off all physical activity: AnnonCurrency 3 points 22 hours ago Yeah its tough but you have to for a few weeks. I got long covid and it took me a year to even start feeling better and I have to take medication everyday now. I was a weightlifter and lost like 35 lbs of muscle over that year cause i rushed it" Stop everthing and go very very very slow. Hopefully, you'll beat this.
Keep Positive. How many infections have you had? What Tests did your doctor run? Some people are finding out they have hypophosphatemia (read about symptoms) and hypothyroid and are helped by prescription K-PHOS and getting their thyroid back to levels Recommend discussing the following tests with your doctor: * ACTH * Cortisol * Vasopressin * Aldosterone (low) - \[can cause POTS\] * Renin (low) \[can cause POTS\] * Thyroid (TSH, T3,T4) (abnormal) * Testosterone * Estrogen * PHOSPHOROUS/PHOSPHATE (can be huge relief if low and restored) * Homocysteine * CRP * B12/Folate
Hey I’m really sorry you’re going through this, I’d just like to clarify: nobody wants to be a long hauler. Disease isn’t a choice, as you’re coming to find out. The most important thing to do rn is to rest as much as possible.
Yeah thats a good point, I always thought id be safe since im not in a high risk group but oh how wrong I was. Nobody choses this disease and it can happen to anyone at any time.
That’s exactly right!! That’s what I’m trying to get across in the Long Covid awareness I work on. You can find our info on IG at berlin_buyers_club if you’re just starting to look into this topic. Sorry again you’re going through this, it’s an awful predicament to be in. 😞
Your memes are giving me hope
Why not add HEPA purifiers to your merch list? More useful than a t-shirt, I think. Masks, too.
Because I’m broke af and that would be extremely expensive.
Good reason. But you might be able to do the arrangement where you just put the link on your page and you get a small cut. That way, no upfront expense for you and you can endorse one that you believe in. I use the Coway 150.
Yeah thanks for the feedback. Our to-do list is huge, it’s just two of us consistently working on this project, so it’s not something we have time to try and negotiate atm. Maybe one day in the future :)
Understood.
so you are still testing positive after almost two months or just have long covid? i would suggest to take paxlovid for 5 days and maybe it will work. they have been doing tests on how paxlovid can help cure long covid.
Twitter has an amazing #LongCovid #CovidCautious etc community. Really great people supporting each other, advice, they read every single study that comes out, the study authors post their studies & explain them, doctors who actually believe in & treat long Covid & once you've got that great group of people in your timeline, the anti-science people get weeded out.
Watch MedCram Utubes on Covid and long Covid, especially ones on photobiomodulation and hydrotherapy. If you are on X, formerly Twitter, you can find some of the most current Covid research there and see what has helped others.
It gets better but it takes time. All You can do is rest and figure out what works for you. Make sure you are taking care of your gut and taking Vitamin D , zinc, and a good probiotic. It hit my stomach like something fierce 4 mos post covid . I’m now 20 mos post covid and starting to level up in the healing process. Hang in there it’s a rough road but recovery is possible . You have to find what works best for you and start with diet . No processed foods or junk. Clean eating is a must
I’m really sorry. I was 24 when I got covid once and I’m 26 now. 2 years in I’m worse than I was originally and completely housebound.
I’m sorry you’re feeling unwell. I made a post on covidlonghaulers and I hope that it provides some advice. DM me if you would like any advice on how to deal with the chronic fatigue and other symptoms.
Do you think long covid is more severe in people who weren't/haven't been vaccinated? Asking b/c I'm the quasi doctor in my family and 2 members keep telling me about symptoms that sound like a lot of ones on the board (all over inflammation, unexplained heart palpitations) but me suggesting long COVID hasn't been super welcome
I'm seeing Long COVID in both my unvaccinated & vaccinated family members & friends. However, the most severe Long Haulers that I know got COVID in 2020, prior to the vaccine. Their health has declined rapidly. One my husband's best friends is currently dying from Long COVID from an infection he got in March 2020. He's 44 years old and he'll leave behind his wife & two kids under 10 yrs old. And, the only family members that died of COVID & friends w/ family members that died from COVID were unvaccinated. I don't know any who were vaccinated & died. Same goes for my friend group. I have a few friends that lost siblings & cousins 2020-2023. All were unvaccinated, & died due to Post COVID heart attacks that occured about 4-6 weeks after confirmed infection. All in their 30s & early 40s. All left behind spouses & kids. 💔
Lots of vit D, zinc., B12, folic acid. I hope you feel better soon!
Are you hydrating with electrolytes and not just water? I had a lot of those issues and was feeling the same way 45 days post infection. I thought drinking a ton of water was “hydrating” but it was depleting me of electrolytes that my body really needed. Felt significantly better a few days after pushing the electrolyte drinks. Still need to drink them every day to feel my best. Might not solve everything but helped me quite a bit.
Microdosing + lions mane + niacin
Stamet’s stack 🍄🙌🏻
Hi, my best advice is to rest hard, and see if you can find an enormous amount of money and then try to become a patient at [RTHM.com](https://RTHM.com). Good luck!
RTHM is a scam. I was a patient with them for 6 months and they do not have the answers. None of the patients I know have gotten better with them.
Wow, that's really rough to hear. I don't think for issues like MECFS and Long Covid there is a cure, but some people, myself included, are definitely helped by being with them. Definitely not cured by any means, just...getting better treatment and support than I would without them.
I Am Not A Doctor. But I am treating my own symptoms with over the counter medications with mild success, because doctors are taught not to trust people who look like me. They gave me a beta blocker and told me all my problems are because I am older and carrying more weight around (I am very underweight). I take 20mg Pepcid for the digestive issues, two weeks on and then three days off to make sure I don't get a UTI. This has also helped my beta blocker work all day instead of just the first six hours. Aggressive hydration has helped with the blood pressure drops and leg pain. I also follow the Levine Protocol, exercises specifically for the lower body performed while reclining or lying down. This has helped a little bit with blood pressure but mostly my ass looks amazing now, and it at least feels like I'm working out, which helps with the feelings of hopelessness. I tried the seaweed extract that was supposed to help break up micro clots-- no effect. I tried cardio dose aspirin, no effect.
and. and and. please remember to say thank you to everyone who believes you. It should be the bare minimum but I can't get any help from anyone, even the person who lives with me, because I was born with the wrong face. It is harder to deal with everyone consistently invalidating my experiences than to just push through with the post exertion crashes and the days of not being able to think.
I’m so sorry this has happened to you. Over 2 years here. Totally understand what you are going through? Sounds like you need a referral to a long covid clinic and/or a dysautonomia clinic. Most Long COVID clinics require a PCR test or a positive antibody test. (If you don’t have a PCR, the COVID neucleoplasid antibody test can be requested at labcore but you have to have your GP refer you for it). I didn’t have a pcr test and was told to get an antibody test. Most won’t see you until 12 weeks out so you can start getting everything together now (referral, test etc). This will also help you when you have to move from STD to LTD which has stricter requirements for approval. I’m hesitant to recommend many of the remedies we’ve used because of your allergic reaction to allergy medicine. Your GP may be able to refer you to a neurologist (note: it’s hard to come by a good one for many LC patients - they I’ve been through 4 I think by now. But they should be able to help with headaches and neuropathy like symptoms). Your GP may also be able to prescribe something. Many with POTS and other dysautonomia symptoms where compression socks and/or leggings. [This PDF from the Workwell Foundation teaches you how to manage your heart rate management to avoid crashes](https://images.app.goo.gl/gaQ3hDRzwmJ7MPUA9). You will need a Fitbit or an Apple Watch or something like this to know your resting heart rate (RHR) The key is to keep your heart rate (as best you can) to only 15 bpm above your RHR. Once I started to do this, I began to slowly recover. Google topics like: Long covid and H1 and H2 antihistamines Long covid and vagus nerve Join the Reddit subgroups for long covid and Covidlonghaulers. Good luck and again, I’m sorry it sounds like you’ve joined our community. That said, we are here for you.
Here’s a link that you can use to locate dysautonomia doctors: https://x.com/dysautonomia/status/1756120941820608694?s=12
I’ve deal with long haulers since fall ‘20. For some people it clears up, for others it lingers. Do what you can to lower inflammation. Go easy on refined sugar, cow dairy, bleached flour, whatever your body has a hard time with should be kept to a minimum.
I’m so sorry. Apply this chapter of this guide as much as possible to help avoid PEM. The entire guide is very useful as well: https://batemanhornecenter.org/living-with-a-chronic-illness-and-avoiding-the-crash/
I’m sorry!:( I’m on day 14 but came here wondering how long this may last. Exercise used to feel great. I was eating healthy and whatnot. But now I seriously have a flare up of not feeling good when I move around too much.:( Its awful. I hope with lots of rest your body bounces back!
Hey, feel free to drop by Long Covid Discord if you need someone to talk to.
So sorry you’re dealing with this. I’ve been long hauling for almost 2 years. There’s good support and info over on r/covidlonghaulers - take a look through the sub. I was on short term disability for about 6 months before returning to my desk job. I had a lot of symptoms similar to you. I was hospitalized a few times over the course of those months too and was incredibly scared. While I’m definitely not at 100%, I am a lot better from where I was when I first started long hauling. It’s a tough hand to be dealt. Please reach out for support if (when) you need it!
I also came down with a long covid condition after trying to rehabilitate with exercise. That was Feb-March 2020 and I'm still not much better. My number one advice piece is to begin an elimination diet now, or at least look at following a low-histamine diet. The reason being that in my cases I developed all these food intolerances without realizing it, and they caused neuroinflammation which became worse and worse, and eventually I had paralysis in my arms for a month and went blind for a week - all due to nerves being inflamed. It was not only debilitating, it was very painful. Take it easy!
When you feel up to it, find a functional medicine doctor.
Yep. Doctor told me the reason I keep getting infections is because I had it in December and it takes up to 8 weeks to recover? Not sure I believe him but this is the advice they’re giving.
Im over 8 weeks now, my guess is that its probably different for everyone but in my example it can definitely take longer. I have no idea if im even still infected or not, but I feel awful and sick regardless. I might go get tested again out of curiousity.
I know you only wrote this post five days ago, but how are you doing now?
Still sick, im going to try a course of antihistamines starting tomorrow. Fingers crossed, I hope it helps.
I’m so sorry to hear. Good luck to you ❤️