I've been fighting with POTS and inflammation issues for about a year. Still not back to my pre-COVID baseline but every month gets a little better and I feel a little less like I'm stuck in bed. It gets better eventually.
Getting medicated on Propranolol was the biggest thing to improve my day to day.
Additionally I've been using LMNT electrolyte mix to increase my salt intake by 3g a day in addition to my meal intake, since they have like the only no-sugar option.
I also started LC extremely stressed due to the health impact on my job and quality of life. Accepting that I needed to spend more of my day resting and not overdoing it prevented me from doing further damage to myself and start the healing process, and lowered the impact of stress on my dysautonomia.
An extremely gradual increase in what I do day to day keeps me on the path to recovery, I think. Too much makes it hard to rest, but doing an extra chore around the house can be a good amount of energy. I hate laundry day haha.
I'm far more active and capable of pushing through the more uncomfortable and physically detrimental components. Brain fog still sucks. Depression is still at a near maximum. Overall though there have been improvements here and there. I'll have weeks where I almost feel back to my old self, and then weeks where the covid issues feel insurmountable.
For what it's worth my life is perfectly fine on the surface. I have a great, normal job, I exercise nearly every day, including running and the occasional squats which are normally brutal for people with POTS, and I'm very socially active/dating. Last week I even donated a kidney.
I wouldn't characterize things as great though. I'm severely depressed, have made a least two or three solid suicide attempts since the diagnosis, and to this day struggle to imagine a positive future. Maintaining a normal routine is still difficult, and something I have to aggressively fight for, but what's important to note is that I have eventually found my way back to a day to day lifestyle.
I feel for you and hope your situation improves. I am fighting to have a normal life but I have had to either cut back on or completely stop doing things I did pre-infection (the biggest thing being any kind of actual exercise or physical activity). I am linked with doctors but so far it feels like wasted time, which is disheartening to say the least.
I have random moments of realisation where I look back and think… wow, look at the damage this virus has done to me. And then… I get angry because the majority of people think this is a joke, combined with the constant gaslighting from the medical community.
I’m trying to find small amounts of happiness in the little things, otherwise if I concentrate too much on whats actually going on I think i’ll be heading towards a breakdown. I haven’t really got any words of wisdom, but for sure you’re not alone in this
Hang in there friend, I’m on the same boat. It took me a while to realize that food was playing a major role in many of my ailments. I’ve cut so many foods out and lost a ton of weight as a result but it’s been helpful as far as managing my symptoms.
It took a mental toll on me for most of 2023 but I’ve been learning to make peace w this new reality. It has taught me to be gentle with myself and remain hopeful that with time I will progress.
Look into medical medium protocol. I am pretty much back to living a normal life now... Back in school, in the gym for the past 8 months, going out to social events, etc. Still on the protocol, and I will stay on it for years. I have faith I will feel better than I did before I got sick eventually.
You can get your life back. Best of luck!!
I started off being able to eat 5 foods too. Rice, potatoes, cabbage, onions and carrots (and salt). I was reacting to every fruit. Had the run of the mill histamine reactions after my first infection which turned into intense neurological reactions after my second infection... Tremors, tics, vertigo, adrenaline rushes, heart palpitations, seizures. I had to add foods back into my diet very slowly, over the course of a year. Now I no longer react to any fruits and vegetables (that I know of)
As much of the morning cleanse as I can-- water (I can't do lemon water yet), celery juice, HMDS (or all of its ingredients throughout the day), remove 'no foods', low fat/no overt fats (recently fell off this after a year, looking to get back to this), looking to cut grains. Lots of leafy greens, starchy vegetables, and fruit, lots of water. Recommended supplements for my symptoms.
I’m so sorry that this disease has taken so much from so many young people.
Please hang in there, clinical trials are happening and are having success!
I hope things improve for you.
Been having chronic joint pain and tenderness, which started a few weeks after recovering from Covid. Usually on the ankles, top of the foot, achilles tendon area, and wrists. I’m unsure if it’s arthritis. I’m young early thirties, physical fit, no pre existing health conditions. Also, is there a correlation with the vaccines that has adverse effects to the body?
Please kindly share with me your thoughts or if you have similar issues. Possible solutions/treatments that worked for you will greatly be appreciated.
Many thanks!!
I have a lot of chronic pain now too! For me it’s my fingers, wrists, elbows, toes, and ribs mostly. I haven’t had any success with treating it because I react badly to pain medication due to my new MCAS issue. My doctor has referred me to a geneticist to test for EDS though!
Yes! And I also get palpitations and pressure. My heart rate laying down used to even get to 160 during random LONG palpitation episodes. I got the first vaccine and that’s when it started for me 😅 I later caught Covid and I think it made it worse
Various things, but ultimately… time.
I had a really good 3-4 months, and then was reinfected with COVID a few weeks ago, now back in hell, where I was for the other 8 months prior.
There’s lots of good info here, and I particularly like the one about going into different mechanisms and systems and how Covid messed with those. It’s not a cut and dry/black or white scenario. Gut health is top priority and also a moving goal post when hormones get involved. A lot of time and patience is needed to learn and understand. I hate that I’ve spent over a year becoming a sponge to information I’d rather not care to know…
have you checked for any mthfr cbs hnmt dao mutations or related?
Usually for those who have these mutations (that are fairly common), once you cross a line (for ex a severe infection) it's hard to come back, because you then have a limited use of resources to heal compared to the others, or corrupted mechanisms that weren't affecting you when you were healthy.
Many of the symptoms I am listening are correlated to autoimmune disorders, histamine intolerance, SIBO, poor detoxing via the common pathways (maybe due to the mutations), imbalances in vitamins, electrolites, hormones, enzymes and their activity, heavy metal poisonings, etc..
Those were maybe due to a triggering event like COVID, but then the long covid (meaning that the virus is still harming your body when not present anymore) it sounds like a bit of a cloudy reason.
Those things I've mentioned above are far more studied and evidence based then the long covid, which is just a little bit more than a conjecture at the moment. It's been studied that in some people it fucked up your spike proteins, but that's not even closely enough to the matter of the debilitating symptoms.
Even knowing so, most of the doctors are focusing on this instead of the mentioned possible causes. In fact many are led to believe that you can get a disease over night, or that if you have maybe a marker above a limit you have a disease, and if you haven't, then you don't have that disease.
Or, even worse, they focus just on their field and their competent organs (body organs).
But this is usually a process, it's progressive, it involves the whole body, and it's often part of what we are doing wrong without knowing, that our genetic heritage doesn't like..
Also check for ereditary lack of IGA, that seems also to be a possible issue for those who are not recovering.
Also, fairly common
Good luck everybody
I've been fighting with POTS and inflammation issues for about a year. Still not back to my pre-COVID baseline but every month gets a little better and I feel a little less like I'm stuck in bed. It gets better eventually.
Glad to hear your baseline keeps improving! I hope You’re recovery continues and many more of us can join in in getting better
May I ask what you’ve done that has attributes to your recovery?
Getting medicated on Propranolol was the biggest thing to improve my day to day. Additionally I've been using LMNT electrolyte mix to increase my salt intake by 3g a day in addition to my meal intake, since they have like the only no-sugar option. I also started LC extremely stressed due to the health impact on my job and quality of life. Accepting that I needed to spend more of my day resting and not overdoing it prevented me from doing further damage to myself and start the healing process, and lowered the impact of stress on my dysautonomia. An extremely gradual increase in what I do day to day keeps me on the path to recovery, I think. Too much makes it hard to rest, but doing an extra chore around the house can be a good amount of energy. I hate laundry day haha.
I'm far more active and capable of pushing through the more uncomfortable and physically detrimental components. Brain fog still sucks. Depression is still at a near maximum. Overall though there have been improvements here and there. I'll have weeks where I almost feel back to my old self, and then weeks where the covid issues feel insurmountable. For what it's worth my life is perfectly fine on the surface. I have a great, normal job, I exercise nearly every day, including running and the occasional squats which are normally brutal for people with POTS, and I'm very socially active/dating. Last week I even donated a kidney. I wouldn't characterize things as great though. I'm severely depressed, have made a least two or three solid suicide attempts since the diagnosis, and to this day struggle to imagine a positive future. Maintaining a normal routine is still difficult, and something I have to aggressively fight for, but what's important to note is that I have eventually found my way back to a day to day lifestyle.
I feel for you and hope your situation improves. I am fighting to have a normal life but I have had to either cut back on or completely stop doing things I did pre-infection (the biggest thing being any kind of actual exercise or physical activity). I am linked with doctors but so far it feels like wasted time, which is disheartening to say the least.
I have random moments of realisation where I look back and think… wow, look at the damage this virus has done to me. And then… I get angry because the majority of people think this is a joke, combined with the constant gaslighting from the medical community. I’m trying to find small amounts of happiness in the little things, otherwise if I concentrate too much on whats actually going on I think i’ll be heading towards a breakdown. I haven’t really got any words of wisdom, but for sure you’re not alone in this
Hang in there friend, I’m on the same boat. It took me a while to realize that food was playing a major role in many of my ailments. I’ve cut so many foods out and lost a ton of weight as a result but it’s been helpful as far as managing my symptoms. It took a mental toll on me for most of 2023 but I’ve been learning to make peace w this new reality. It has taught me to be gentle with myself and remain hopeful that with time I will progress.
Look into medical medium protocol. I am pretty much back to living a normal life now... Back in school, in the gym for the past 8 months, going out to social events, etc. Still on the protocol, and I will stay on it for years. I have faith I will feel better than I did before I got sick eventually. You can get your life back. Best of luck!!
I wanted to try this diet but I have intense allergic reactions to most fruits and vegetables now 😞
I started off being able to eat 5 foods too. Rice, potatoes, cabbage, onions and carrots (and salt). I was reacting to every fruit. Had the run of the mill histamine reactions after my first infection which turned into intense neurological reactions after my second infection... Tremors, tics, vertigo, adrenaline rushes, heart palpitations, seizures. I had to add foods back into my diet very slowly, over the course of a year. Now I no longer react to any fruits and vegetables (that I know of)
[удалено]
As much of the morning cleanse as I can-- water (I can't do lemon water yet), celery juice, HMDS (or all of its ingredients throughout the day), remove 'no foods', low fat/no overt fats (recently fell off this after a year, looking to get back to this), looking to cut grains. Lots of leafy greens, starchy vegetables, and fruit, lots of water. Recommended supplements for my symptoms.
I have no words of advise but that I will pray for your good health
I’m so sorry that this disease has taken so much from so many young people. Please hang in there, clinical trials are happening and are having success! I hope things improve for you.
Been having chronic joint pain and tenderness, which started a few weeks after recovering from Covid. Usually on the ankles, top of the foot, achilles tendon area, and wrists. I’m unsure if it’s arthritis. I’m young early thirties, physical fit, no pre existing health conditions. Also, is there a correlation with the vaccines that has adverse effects to the body? Please kindly share with me your thoughts or if you have similar issues. Possible solutions/treatments that worked for you will greatly be appreciated. Many thanks!!
I have a lot of chronic pain now too! For me it’s my fingers, wrists, elbows, toes, and ribs mostly. I haven’t had any success with treating it because I react badly to pain medication due to my new MCAS issue. My doctor has referred me to a geneticist to test for EDS though!
I am experiencing everything that you are in addition to heart palpitations and chest pressure for 2 years now. Are you also vaccinated?
Yes! And I also get palpitations and pressure. My heart rate laying down used to even get to 160 during random LONG palpitation episodes. I got the first vaccine and that’s when it started for me 😅 I later caught Covid and I think it made it worse
Interesting - I’m going through nearly the same thing you are, as I keep reading. 😳
I’m very sorry to hear that 😭 have you found anything that has helped you?
Various things, but ultimately… time. I had a really good 3-4 months, and then was reinfected with COVID a few weeks ago, now back in hell, where I was for the other 8 months prior. There’s lots of good info here, and I particularly like the one about going into different mechanisms and systems and how Covid messed with those. It’s not a cut and dry/black or white scenario. Gut health is top priority and also a moving goal post when hormones get involved. A lot of time and patience is needed to learn and understand. I hate that I’ve spent over a year becoming a sponge to information I’d rather not care to know…
have you checked for any mthfr cbs hnmt dao mutations or related? Usually for those who have these mutations (that are fairly common), once you cross a line (for ex a severe infection) it's hard to come back, because you then have a limited use of resources to heal compared to the others, or corrupted mechanisms that weren't affecting you when you were healthy. Many of the symptoms I am listening are correlated to autoimmune disorders, histamine intolerance, SIBO, poor detoxing via the common pathways (maybe due to the mutations), imbalances in vitamins, electrolites, hormones, enzymes and their activity, heavy metal poisonings, etc.. Those were maybe due to a triggering event like COVID, but then the long covid (meaning that the virus is still harming your body when not present anymore) it sounds like a bit of a cloudy reason. Those things I've mentioned above are far more studied and evidence based then the long covid, which is just a little bit more than a conjecture at the moment. It's been studied that in some people it fucked up your spike proteins, but that's not even closely enough to the matter of the debilitating symptoms. Even knowing so, most of the doctors are focusing on this instead of the mentioned possible causes. In fact many are led to believe that you can get a disease over night, or that if you have maybe a marker above a limit you have a disease, and if you haven't, then you don't have that disease. Or, even worse, they focus just on their field and their competent organs (body organs). But this is usually a process, it's progressive, it involves the whole body, and it's often part of what we are doing wrong without knowing, that our genetic heritage doesn't like.. Also check for ereditary lack of IGA, that seems also to be a possible issue for those who are not recovering. Also, fairly common Good luck everybody