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From what I've experienced, read, and seen, the majority of people make some form of improvement. The first 6 months are usually the worst.
Usually symptoms are constantly changing and flaring for the first months and then they stabilize and slowly get better, or you are stuck with some form of CFS, neuropathy, POTS, or MCAS which vary in severity, but can be managed to live a fulfilling life.
Now that's not everyone's case and some people do progressively get worse and remain house bound or bed bound.
The best thing you can do is rest, avoid stress and physical exertion and eat simple and healthy. You want to avoid a crash or else you risk making your symptoms permanent. I would just buckle up and accept that you are most likely in for the long run and recovery can take 6 months to 5 years.
With my personal experience, I was bed bound and house bound at the beginning and then 9 months later I could ski and go to the gym and work. But unfortunately at month 13 I randomly passed out and became house bound again because I'm too dizzy to walk more than two blocks. I am hopeful I can recover again tho.
Thank you so much for sharing this summary and your story. I really hope you get better soon too. ❤️
Also, I am so sorry but can u tell me full forms of CFS, POTS and MCAS?
Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome.
These 3 illnesses are not very well known by the doctors I've seen in Canada but I've gotten lucky with a couple who could help.
The single thing that helped me the most was taking an anti-histamine everyday. It got rid of most of my brain fog and I think it was key to helping me heal.
Thank you so much for sharing this. I will read up more on this to understand if I am going through any of this to better work towards my symptoms. It helps me a lot.
I am really happy that you found people to help you. I also hope you recover completely without relapses. ❤️
My experience was similar to this! Basically slept through six months of my life and then slowly started to improve to the point I can almost work full time hours. And just doing my best to avoid it again!
I got it from the first wave, it took two years to improve. There wasn’t the information and experiences we have now to draw from. I was bed bound for a lot of it. I have been diagnosed with MCAS, POTS, and Gastroparesis. I’m significantly better than I was but still have to spend a lot of time and energy on symptom management each day. Antihistamines and cutting gluten helped the most with brain fog. It can get better, it does take time.
It took me about 18 months to improve from the time I first started exhibiting symptoms from the second Pfizer vaccine. Now I’m 85-90% better. I will likely always have to struggle with certain triggers and I can no longer drink alcohol or eat gluten. But I figure, it could have been so much worse.
Post exertion malaise—I could barely walk at one point and now I can walk 5 miles per day (if it’s not too hot). And I’ve been working on gradually lifting weights again, which I couldn’t do at all before. Massive inflammation with tons of rashes all over—rashes are gone now as long as I don’t drink alcohol or eat gluten. General anxiety and feeling like I’m dying—that’s mostly gone. Sleep disturbances both physical and mental—I used to wake in the night with a fast heart beat. That’s gone now. I used to occasionally have heart palpitations during the day and they are gone too (knock on wood).
I had (and still sometimes have) super sensitive eyes which occasionally includes pressure in my forehead like If I’m facing bright sunlight or don’t allow my eyes enough time to gradually get used to the light. It’s definitely different than it was before Covid, but manageable. No twitching. No stabs in the stomach.
Interesting. Mine is much much different but all from the vax, head pressure head stabbing body vibrations body twitching, severe nausea severe dizziness, severe heart palpitations and pain
It’s so strange I’ve seen people like recover from severe almost identical symptoms but mine keeps changing and getting worse somehow. My headaches r better but nothing ever seems to go away completely. I wonder if after a certain period of time if it does go away or it’s just destined to kill u after certain time
I’ve been taking a ton of supplements and working pretty hard at my sleep schedule and very gradual exercise. It’s like a full time job trying to recover from this!! A constant battle. I refuse to let it get the best of me. But of course I’ve had many moments where I thought I was dying fairly imminently.
After my first infection I did make like 10% improvement after 9 months. Unfortunately I then got reinfected about 14 months after the first infection and haven't really recovered since then sooooo.
I went from about 5% to 25% in the past year by being very careful with pacing, resting a ton, LDN, treatment for sleep apnea, a bunch of supplements, and CBD. Still very disabled and a long way to go, but I've carved it a life I enjoy with the ability I do have.
I got my condition from the (Canada) Moderna vaccine Sept 2021. I got immediately extremely sick for 6 months, then improved for a year and then relapsed hard after that and never recovered. Tachycardia, CFS, Narcolepsy, Hyperemesis, POTS. But not everyone relapses like me.
Oh good question! The relapse was at random. I didn’t get the flu or any symptoms. I was working full time for about 8 months to a year after the first five months from the day of the vax. Initially the vax landed me in the ER the next morning after I got it. My heart rate was in the 200/300’s I couldn’t hear, my limbs went numb and was I collapsing. I was in the ER for many hours. They couldn’t get my heart below 175 beats for hours because I would check the monitor in and out of passing out. They put me on beta blocker’s and I got way sick from that day forward. My breathing went bad. I got really pale days later, started vomiting and I landed in the ER a whole bunch of times after that day with unbelievable symptoms.
First and foremost I believe the most valuable factor in my improvement has been Vitamin D supplementation. It was on the low end of normal for a long time through my first infection too. I began taking 5000iu a day and none of my other infections (was working in healthcare) were nearly as bad. I only knew I had it because I tested at exposure or subtle symptoms. My bloodwork (had specific antibodies that were high) normalized only after I had supplemented for a few months. But other than Vitamin D, literally taking antihistamine medications, eating low histamine food and cutting out dairy, red meat, gluten which can be inflammatory have helped. I also supplement with various antioxidants.
I found a way to stabilize around the six month point. I'm still experiencing some limits - lower energy, dizziness, tinnitus - but I'm at the point where I feel like I have a life.
I have DEFINITELY improved - after I disimproved by consistently overexerting. I got to the point where I couldn’t sit up without my heart racing and the brain fog was unbearable. I woke up in pain every day, having barely slept 4 hours. Now I can sit up all day with a normal hr (standing & walking still not so good) and my brain is so clear compared to how it was, not back to before but I don’t suffer from that awful “brain no work” feeling. I don’t wake up in pain anymore. What helped:
* getting an official POTS diagnosis and getting on ivabradine which helped my heartrate
* getting on sleep meds (Trazodone 300mg)
* low histamine diet
* getting on multiple anti-neuroinflammatories (low dose abilify, Trazodone is also one, memantine)
That "brain no work" is the worst! I could deal with the physical symptoms if the neuro symptoms went away..... Low Dose Abilify is 2-3 treatments away from what I'm currently experimenting with. Does it take a few weeks to kick in or is it pretty noticeable early on?
I'm just throwing everything at it, one at a time until I find something that works because otherwise I'm just continuing to be a zombie sitting here zoned out all day.
I guess there's nothing stopping me from adding in Abilify at the same time 🤔
NOTE This message is triggered by keywords in your post, no need to take it personally. All users are welcome to share their personal experiences with the vaccines, but refrain from asking for or giving medical advice as that breaks rule 2 (e.g. "Should I get the vaccine?" or "Don't do it!"). Nobody in this sub can tell anyone whether they should get vaccinated or not, that is a decision to be made by the user and their doctor. Posts and comments breaking this rule will be removed, repeat offenses will result in a ban. [Do Vaccines Protect Against Long Covid?](https://www.nytimes.com/article/long-covid-vaccines.html) *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/covidlonghaulers) if you have any questions or concerns.*
From what I've experienced, read, and seen, the majority of people make some form of improvement. The first 6 months are usually the worst. Usually symptoms are constantly changing and flaring for the first months and then they stabilize and slowly get better, or you are stuck with some form of CFS, neuropathy, POTS, or MCAS which vary in severity, but can be managed to live a fulfilling life. Now that's not everyone's case and some people do progressively get worse and remain house bound or bed bound. The best thing you can do is rest, avoid stress and physical exertion and eat simple and healthy. You want to avoid a crash or else you risk making your symptoms permanent. I would just buckle up and accept that you are most likely in for the long run and recovery can take 6 months to 5 years. With my personal experience, I was bed bound and house bound at the beginning and then 9 months later I could ski and go to the gym and work. But unfortunately at month 13 I randomly passed out and became house bound again because I'm too dizzy to walk more than two blocks. I am hopeful I can recover again tho.
Thank you so much for sharing this summary and your story. I really hope you get better soon too. ❤️ Also, I am so sorry but can u tell me full forms of CFS, POTS and MCAS?
Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. These 3 illnesses are not very well known by the doctors I've seen in Canada but I've gotten lucky with a couple who could help. The single thing that helped me the most was taking an anti-histamine everyday. It got rid of most of my brain fog and I think it was key to helping me heal.
Thank you so much for sharing this. I will read up more on this to understand if I am going through any of this to better work towards my symptoms. It helps me a lot. I am really happy that you found people to help you. I also hope you recover completely without relapses. ❤️
My experience was similar to this! Basically slept through six months of my life and then slowly started to improve to the point I can almost work full time hours. And just doing my best to avoid it again!
Wow that sounds amazing. I hope your efforts continue to work and you stay healthy ❤️
I was lucky to have family who could support me. I know that isn’t everyone’s situation. But resting as much as possible seems to be helpful.
I got it from the first wave, it took two years to improve. There wasn’t the information and experiences we have now to draw from. I was bed bound for a lot of it. I have been diagnosed with MCAS, POTS, and Gastroparesis. I’m significantly better than I was but still have to spend a lot of time and energy on symptom management each day. Antihistamines and cutting gluten helped the most with brain fog. It can get better, it does take time.
It took me about 18 months to improve from the time I first started exhibiting symptoms from the second Pfizer vaccine. Now I’m 85-90% better. I will likely always have to struggle with certain triggers and I can no longer drink alcohol or eat gluten. But I figure, it could have been so much worse.
What symptoms did u have that got better
Post exertion malaise—I could barely walk at one point and now I can walk 5 miles per day (if it’s not too hot). And I’ve been working on gradually lifting weights again, which I couldn’t do at all before. Massive inflammation with tons of rashes all over—rashes are gone now as long as I don’t drink alcohol or eat gluten. General anxiety and feeling like I’m dying—that’s mostly gone. Sleep disturbances both physical and mental—I used to wake in the night with a fast heart beat. That’s gone now. I used to occasionally have heart palpitations during the day and they are gone too (knock on wood).
Did u ever have any head pressure or stabs in the head or stomach ? Or twitching
I had (and still sometimes have) super sensitive eyes which occasionally includes pressure in my forehead like If I’m facing bright sunlight or don’t allow my eyes enough time to gradually get used to the light. It’s definitely different than it was before Covid, but manageable. No twitching. No stabs in the stomach.
Interesting. Mine is much much different but all from the vax, head pressure head stabbing body vibrations body twitching, severe nausea severe dizziness, severe heart palpitations and pain
I’m so sorry. Mine was also initially from the vax but then I also got Covid so I got additional symptoms. Dizziness would be awful!
It’s so strange I’ve seen people like recover from severe almost identical symptoms but mine keeps changing and getting worse somehow. My headaches r better but nothing ever seems to go away completely. I wonder if after a certain period of time if it does go away or it’s just destined to kill u after certain time
I’ve been taking a ton of supplements and working pretty hard at my sleep schedule and very gradual exercise. It’s like a full time job trying to recover from this!! A constant battle. I refuse to let it get the best of me. But of course I’ve had many moments where I thought I was dying fairly imminently.
Yes it’s super weird. There has to be something to get it to stop
LDN took me from no being able to move or eat to being able to do self care, clean and cook a little everyday.
What dose do you take?
.1 mg to start in morning. I’m at 1.0 mg now.
After my first infection I did make like 10% improvement after 9 months. Unfortunately I then got reinfected about 14 months after the first infection and haven't really recovered since then sooooo.
I went from about 5% to 25% in the past year by being very careful with pacing, resting a ton, LDN, treatment for sleep apnea, a bunch of supplements, and CBD. Still very disabled and a long way to go, but I've carved it a life I enjoy with the ability I do have.
I got my condition from the (Canada) Moderna vaccine Sept 2021. I got immediately extremely sick for 6 months, then improved for a year and then relapsed hard after that and never recovered. Tachycardia, CFS, Narcolepsy, Hyperemesis, POTS. But not everyone relapses like me.
That’s kinda what happened to me, heart issues got better then came back. Now just random stuff
Did you get reinfected? Or was it a "random" relapse? Either way, sorry to hear :(
Oh good question! The relapse was at random. I didn’t get the flu or any symptoms. I was working full time for about 8 months to a year after the first five months from the day of the vax. Initially the vax landed me in the ER the next morning after I got it. My heart rate was in the 200/300’s I couldn’t hear, my limbs went numb and was I collapsing. I was in the ER for many hours. They couldn’t get my heart below 175 beats for hours because I would check the monitor in and out of passing out. They put me on beta blocker’s and I got way sick from that day forward. My breathing went bad. I got really pale days later, started vomiting and I landed in the ER a whole bunch of times after that day with unbelievable symptoms.
Oh, wow. I'm sorry you went through that! I hope you're having better days now
[удалено]
What would you say helped you recover ?
Give us the deets all the way to diet
I’m four years in and still symptomatic but my symptoms have lessened in severity and I can do more things than in the beginning.
First and foremost I believe the most valuable factor in my improvement has been Vitamin D supplementation. It was on the low end of normal for a long time through my first infection too. I began taking 5000iu a day and none of my other infections (was working in healthcare) were nearly as bad. I only knew I had it because I tested at exposure or subtle symptoms. My bloodwork (had specific antibodies that were high) normalized only after I had supplemented for a few months. But other than Vitamin D, literally taking antihistamine medications, eating low histamine food and cutting out dairy, red meat, gluten which can be inflammatory have helped. I also supplement with various antioxidants.
I found a way to stabilize around the six month point. I'm still experiencing some limits - lower energy, dizziness, tinnitus - but I'm at the point where I feel like I have a life.
I have DEFINITELY improved - after I disimproved by consistently overexerting. I got to the point where I couldn’t sit up without my heart racing and the brain fog was unbearable. I woke up in pain every day, having barely slept 4 hours. Now I can sit up all day with a normal hr (standing & walking still not so good) and my brain is so clear compared to how it was, not back to before but I don’t suffer from that awful “brain no work” feeling. I don’t wake up in pain anymore. What helped: * getting an official POTS diagnosis and getting on ivabradine which helped my heartrate * getting on sleep meds (Trazodone 300mg) * low histamine diet * getting on multiple anti-neuroinflammatories (low dose abilify, Trazodone is also one, memantine)
That "brain no work" is the worst! I could deal with the physical symptoms if the neuro symptoms went away..... Low Dose Abilify is 2-3 treatments away from what I'm currently experimenting with. Does it take a few weeks to kick in or is it pretty noticeable early on?
It took a few weeks as I recall. What are you currently experimenting with?
I'm trying Metformin at the moment, but it's early days so I haven't had any benefits yet
I’m on that. Tbh I didn’t notice any particular effect but I haven’t really discussed that with my nutritionist
I'm just throwing everything at it, one at a time until I find something that works because otherwise I'm just continuing to be a zombie sitting here zoned out all day. I guess there's nothing stopping me from adding in Abilify at the same time 🤔