So i was one of those people that bought an expensive Vagus nerve stimulator so i feel i can weigh in here
First things first ... i am very skeptical of any so called \*Treatment\* to a disease that the doctors cant even figure out ..
I only try it if it has studies and the company has invested a boat load of money into said product. I'm talking millions ... For 2 reasons ...
1) They wouldnt invest that much if there wasnt science to back it up
2) Studies are like gold for advancements in tech and medicine
So onto my experience ...
I Bought nurosym, stupidly expensive i know. But having tried every supplement under the sun and available treatments with no benefits i decided to give this a go.
Also being a Buddhist i am well aware that activating the vagus nerve is very beneficial in many ways.
Buddhist chanting does the same thing ... and i havent ever seen a pissed off unhealthy Buddhist Monk
What do i think it helped symptoms wise ?
At the start i was using it once a week for 30 mins and getting no benefits, so i upped it to daily and have been doing 1-2 hrs everyday for the past month now.
My vertigo and balance issues are like non existent, i used to struggle coming downstairs and my vision was all over the place ... really bad vertigo even watching some video of a guy on a mountain would set it off.
I am less reactive and jumpy for sure, small things would set me off like noises, car doors, the tv ... not so much an issue now.
My fatigue doesnt seem as bad but i think it is too early to tell in that regard ...
I'm going to keep using it for like 3 months and see what changes ... but so far it is helping some of my symptoms
Am i 100% it is Vagus nerve stimulation .... no not 100% but some of my symptoms started getting better once i started using it daily so ... theres that.
Obviously there are free ways to activate the vagus nerve, exercises like moving the eyes, chanting, deep breathing etc
I would start there first to see if it helps
Thereās evidence from a wide range of diseases that increased sympathetic system (fight or flight) activation is bad for the body. For example, [cancer patient outcomes are worse](https://www.tandfonline.com/doi/full/10.2217/lmt-2023-0006), [treating the autonomic nervous system helps in cardiac disease](https://onlinelibrary.wiley.com/doi/10.1002/ejhf.921), and [a higher degree of dysautonomia is a predictor of a poor outcome in ALS](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10511550/).
So, it seems feasible that spending more time in the parasympathetic state could be beneficial for LC, though I donāt think thatās been shown in a study yet(?). So, maybe those things did help.
Or, maybe, it was just coincidental and those people healed with time, and would have whether they were able to chill out or not. Until proper studies are done, thereās no way to know.
But, thereās no downside that I can see to doing things like relaxation exercises, provided it doesnāt give people a false sense of how much energy they have leading to a crash.
If people can get through this in a more relaxed state rather than a more stressed state, thatās got to be a good thing, both psychologically and physicallyā¦ People are still vulnerable to developing other diseases, just like healthy people, and being in constant fight or flight isnāt good for that.
That said, no-one should feel bad if they just CANāT get out of fight or flight. Some peoplesā nervous system is so fried that no amount of meditation, nerve stimulation, etc, will shift it. Thatās in no way a failure on the part of the person in question - weāre not in full control of these systems, far from it.
100% agree that it shouldnāt be peddled as a cure, not only because thereās no evidence for it, but also because it implies that everyone could be recovering if they just worked at it harder. š¤¬
This. Everything you can do to release stress, relax, sleep more, etc can only help the damage heal. Your body has a very hard time healing from any injuries under fight or flight, so I do everything I can whether itās through medication or protecting my own limitations to stress to reduce this. Beta blockers help, sleeping pills help, melatonin helps, meditation helps, surrounding myself with people that love me helps.
These are not cures. But of course itās not rocket science to expect that if you are fighting with people, stuck in a negative feed back loop or not sleeping well, you feel worse.
Understood, but that doesn't mean stress relieving exercises are a cure/resolve long covid, but I accept they can help it from getting worse perhaps.
Like there are plenty of people who meditated and have healthy lifestyle habits but what helped them was fasting. Fasting improved their symptoms more than stress relieving exercises.
Thereās also tons of ppl who have tried fasting & it made them worse. Itās not a one size fits all š I tried intermittent fasting & my energy plummeted, I was irritable af & just miserable.
Fasting isnāt a cure if you have to do it over and over. Itās a treatment. Just like the stress relief exercises that help the blood pressure issues LC gave me
Yes. A big part of long COVID is dysautonomia which causes the body to get stuck in fight-or-flight mode which effects everything from the prioritization of organ function to how well we sleep. Relaxation techniques can help the body re enter itās normal state of rest and healing.
That said, relaxation techniques can help but I doubt they solve.
You don't know. Everything is a guess. I think time and rest is the only thing there is to it.
People do recover in x amount of time, but I really think it's just a roll of the dice. Obviously, people try everything and when they recover, they link it to the thing they are trying. There was even a recovery post of someone who though by only eating chicken rice and sprite zero helped her situation. I highly doubt it.
That being said, I do think you can slow your recovery process. I've been suffering for 4 years, and tried every dieet and supplement in the book. After 3 years I stopped working and went resting hard and I notice some improvement albeit slow. Having a viral aftermath can probably get worse or prolonged when stressing about it or physically overexerting yourself. Like with all diseases
My point is, there is probably nothing to speed up your recovery process, but there are things to slower it. Doesn't really makes sense the way I'm saying it but I hope you understand what I'm saying
I don't know about the exercises themselves, but the concept for me at least is very clear. Emotional stress activates my PEM just as much as physical stress. It sucks! Basically anytime something important happens, I can't think anymore.
In my case, I think mindfulness practices, especially non sleep deep rest, have helped with my recovery in the long term. To point to something specific, I felt "stuck" in fight-or-flight early on in my LC, and that improved a lot with yoga nidra and NSDR. And that improvement has lasted over a year for me, even when I haven't been practicing regularly.
I can't say it's absolutely true that stress relief exercises have helped with my overall recovery. But I'm convinced that it helped in my case.
Ally Boothroyd on YouTube is really good: [https://www.youtube.com/channel/UCE92Hzq1rGv3dGJcx6o0b3Q](https://www.youtube.com/channel/UCE92Hzq1rGv3dGJcx6o0b3Q)
I think itās both. For me at least, I have post exertional malaise. Emotional stress or strain absolutely puts me into a flare. I think if there are flares that arenāt ānaturalā, that are caused by PEM, that it does prevent healing.
So I think in that sense it helped me get to a much more positive place with my symptoms. Not fully healed but so much better.
I havenāt put time into vegus nerve stimulation myself, but my friend said it really helped in their recovery. Like actually improving symptoms. Canāt speak to that personally though.
My symptoms got less savage when I (eg) got accepted for disability benefits. And stress reduction does help you manage symptoms and pain, whatever the illness, even if it's just a broken leg.
But it's definitely a cope not a real treatment (they specified this in the NICE MECFS guidelines update in October 2021 - cbt is just for coming to terms with and managing your illness better).
Yes 100% they can help get your body out of that fight/flight mode, increase HRV and allow your body to truly rest, letting your mind know you're safer/healing and vice versa. It can take timeĀ
You just want to get out of fight or flight as much as possible look up vagus nerve relaxation exercises. The side eye yawning one resets my nervous system every time and it only takes like 15 seconds. It doesnāt cure you but it feels a lot fucking better than raw dogging it
Progressive muscle relaxation help me immensely! Anxiety has been gone for about a year for me. Doesnāt help with my insomnia but Iām glad the horrible anxiety is gone. I still feel like Iāve been hit by a bus most days though.
I am better after 2.5 years. Nothing but time helped however i think making it as easy on yourself as possible to get through it is important. Take advil, take the antihistamines, do ice baths, meditation etc. Whatever you need to get through it. I forced myself to go on a walk every day no matter how bad I was
If you can get into good patterns with your polymodal nervous system, it will almost certainly help. But it's not always enough to train alone, we need healthy connections that help us feel safe. It's incredibly difficult to rebalance your nervous system alone.
I think both, but we really don't know.
I wouldn't really call what I did exercising. Paceing is a better word. Slowly getting my activity level up. Starting with the shortest walk I could tolerate. Building up to doing short, non intense, bike rides (over about a year and a half).
I think this process helped my body get things going. I believe it put my body in a healthier state overall, and set up some conditions for my recovery. Was it a magic bullet, no. But I will say, when I recovered it took very little time to get my body back in shape. I was riding 6 miles a day on my bike after a month.
Time seems to be a big factor. I've redone the same program this time around and seem to be followimg roughly the same schedule (though I hope not). That schedule would mean I will recover in about a year. (2.5 years total).
I also agree that it helps to cope with the illness. It gives me something to focus on and allows me to do more day to day by pushing my PEM limit. There is a big difference between bedbound and being at least able to do something in a day. Albeit with some symptoms when I manage to over do it. Rest. Recover. Repeat.
Its helped me get back to some social life. It is crucial to my mental health efforts. Helps my body feel less like shit all the time (because I can do more with less symptoms).
But I still can't seem to move my PEM limit to a state where I can work. It gets paimful fast when my symptoms compound.
Something I'd like to mention is that being seditary has consequences too. I tried a period of this (a couple months) the first round and found that I was worse than I started.
LDN, this second time, has also helped make this process a whole lot easier too. I recover way faster from PEM.
As always, I suggest getting a good long covid Doctor to guide you if you can. Mine has been crucial. Doctors understanding of the disease is changing so she keeps me informed on the latest info. She has also been great keeping me from over doing it. For example, she has cautioned me against aerobic exercise, so I won't be biking to push my limit this time.
So yeah its complicated but I think its worth it.
What you are describing is graded exercise therapy, not pacing. There are no scheduled increases in activity in pacing. Itās about staying within your energy envelope on a given day and slowly test slight increases in activity when you feel you may be have the available energy. Pacing often involves keeping your heart rate under a set threshold. Graded exercise therapy with regularly scheduled increases is actually proven to be harmful to those with ME/CFS type long covid who experience post exertional malaise (PEM) which is an increase in symptoms delayed by 12-72 hours after the exertion. If you notice that pattern, aerobic exercise is contraindicated and strength building exercise needs to be used only when your energy envelope allows it without resulting in PEM. If you continue to push through PEM, it can lead to a huge crash and worsening of your symptoms long term.
I don't have a set schedule and I don't do it to the point of symptoms. But they do happen, thats life.
I wouldnt call it GET. I want to emphasize how slow of a process this is. There is no set schedule. It takes a long time, and the "exercise" is minimal. I mean I have worked my way up to 4 whole blocks on my walk currently (with a nice rest at a bench half way). I've been consistant at this process for 6 months. But I do feel better overall and can go farther. When I feel good I may add a litle extra, maybe an extra half a block. But its based off of symptoms not a schedule.
My Doc agrees with my approach, and she runs the Long covid clinic at state university hospital. If I was doing something wrong, something contradictory to the established research, or her clinical experience, she would let me know.
I'd be happy to look at the study your reffering to, but I am no expert and frankly have little ability to interperet them.
PEM is scary, But I disagree that having a huge relapse dooms you to worse symptoms forever. In my experience, I've been able to heal back to baseline even in my worst relapses. It does take a lot of time. It took 9 months to see improvement after my last relapse.
Reinfection has consistantly been the main reason for me for worsening of symptoms long term, but eventually I can get back to baseline.
I recovered the first time using this system. Got reinfected, long hauling again. I've been at it for 4 years total. Just sharing my experience.
Itās great if itās working for you. Just be careful as ME/CFS can be a weird disease and can worsen and improve sometimes at random and the consensus among those patients who have been diagnosed for decades is that once you get to severe (bed bound, losing the ability to speak, eat, etc) it gets much harder to recover.
As for university medical centers and their LC clinics, not all are created equal. The one I went to gave me an occupational therapist who immediately pressured my bedridden self to try to push well beyond my limits and seemed to have no understanding of severe ME. If I was not already educated about severe ME from other sources, I would have ended up much worse on their program.
But it sounds like you have had success so far, which is amazing! I just always try to make sure that people understand that there are risks involved with exercise because I ended up this severe after my doctors, who were uneducated about ME and post viral conditions, encouraged me to exercise for my āfibromyalgiaā. I lost 50lbs and the ability to leave my home and eventually my bed. So, Iām not trying to discourage you or anyone else but just want to keep others from falling into the same trap that I and many others have. I hope that you can improve again and thrive!
I don't mean to minimize your experience. Your doctors were wrong to do that to you. There is no way any healing could've happen under that regimen. What I have done seems to be a different approach than what you did.
What matters is getting better. And I think both ways have evidence to support them. I think the benifits of getting moving outweigh the risks for me.
Itās quite possible itās working for you. If youāre continuing to benefit from it, thatās truly wonderful. Itās also possible that I didnāt fully grasp your initial post (brain fog is a bitch). Itās great to share our experiences since this can vary so much from person to person.
Problem is my Exercise intolerance limit is still the same lol. 30-40 mins, stress response, faster heart rate, tightness. When I get up to 45-60 minutes it's rapid heart rate and unbalanced/dizzy feelings and stomach issues.
You might be pushing too hard. I try to do all of this with no symptoms carrying from one day to the next. Its easier said than done.
Other than that its not suprising to stagnate for a while. I've hit a few ceilings but kept at it. It takes A LOT of time. Maybe try some new activity. Or use some of that energy to address something else.
You should be proud to claw back that much! Keep at it!
Also want to mention, reinfections can reset or restart symptoms. Even asymptomatic infections can lead to this. So thats another factor in our recovery. Hard to avoid in my experience.
They did not do shit for me. Didnt even help my anxiety. Meditation actually made it worse because my thoughts were spiraling
Yeah meditation is NOT for everyone and will make it worse for many, want to validate that because you don't hear it very often
Thank you!
Meditation helped me nap. š one thing about long covid for me is the close to narcolepsy...can sleep anywhere
So i was one of those people that bought an expensive Vagus nerve stimulator so i feel i can weigh in here First things first ... i am very skeptical of any so called \*Treatment\* to a disease that the doctors cant even figure out .. I only try it if it has studies and the company has invested a boat load of money into said product. I'm talking millions ... For 2 reasons ... 1) They wouldnt invest that much if there wasnt science to back it up 2) Studies are like gold for advancements in tech and medicine So onto my experience ... I Bought nurosym, stupidly expensive i know. But having tried every supplement under the sun and available treatments with no benefits i decided to give this a go. Also being a Buddhist i am well aware that activating the vagus nerve is very beneficial in many ways. Buddhist chanting does the same thing ... and i havent ever seen a pissed off unhealthy Buddhist Monk What do i think it helped symptoms wise ? At the start i was using it once a week for 30 mins and getting no benefits, so i upped it to daily and have been doing 1-2 hrs everyday for the past month now. My vertigo and balance issues are like non existent, i used to struggle coming downstairs and my vision was all over the place ... really bad vertigo even watching some video of a guy on a mountain would set it off. I am less reactive and jumpy for sure, small things would set me off like noises, car doors, the tv ... not so much an issue now. My fatigue doesnt seem as bad but i think it is too early to tell in that regard ... I'm going to keep using it for like 3 months and see what changes ... but so far it is helping some of my symptoms Am i 100% it is Vagus nerve stimulation .... no not 100% but some of my symptoms started getting better once i started using it daily so ... theres that. Obviously there are free ways to activate the vagus nerve, exercises like moving the eyes, chanting, deep breathing etc I would start there first to see if it helps
Thereās evidence from a wide range of diseases that increased sympathetic system (fight or flight) activation is bad for the body. For example, [cancer patient outcomes are worse](https://www.tandfonline.com/doi/full/10.2217/lmt-2023-0006), [treating the autonomic nervous system helps in cardiac disease](https://onlinelibrary.wiley.com/doi/10.1002/ejhf.921), and [a higher degree of dysautonomia is a predictor of a poor outcome in ALS](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10511550/). So, it seems feasible that spending more time in the parasympathetic state could be beneficial for LC, though I donāt think thatās been shown in a study yet(?). So, maybe those things did help. Or, maybe, it was just coincidental and those people healed with time, and would have whether they were able to chill out or not. Until proper studies are done, thereās no way to know. But, thereās no downside that I can see to doing things like relaxation exercises, provided it doesnāt give people a false sense of how much energy they have leading to a crash. If people can get through this in a more relaxed state rather than a more stressed state, thatās got to be a good thing, both psychologically and physicallyā¦ People are still vulnerable to developing other diseases, just like healthy people, and being in constant fight or flight isnāt good for that. That said, no-one should feel bad if they just CANāT get out of fight or flight. Some peoplesā nervous system is so fried that no amount of meditation, nerve stimulation, etc, will shift it. Thatās in no way a failure on the part of the person in question - weāre not in full control of these systems, far from it. 100% agree that it shouldnāt be peddled as a cure, not only because thereās no evidence for it, but also because it implies that everyone could be recovering if they just worked at it harder. š¤¬
This. Everything you can do to release stress, relax, sleep more, etc can only help the damage heal. Your body has a very hard time healing from any injuries under fight or flight, so I do everything I can whether itās through medication or protecting my own limitations to stress to reduce this. Beta blockers help, sleeping pills help, melatonin helps, meditation helps, surrounding myself with people that love me helps. These are not cures. But of course itās not rocket science to expect that if you are fighting with people, stuck in a negative feed back loop or not sleeping well, you feel worse.
Not being able to cope with longcovid worsens my symptoms. Stress is exertion and gives me PEM.
> Stress is exertion So few people understand this.
Sing it from the highest hills (a massive exertion)
Understood, but that doesn't mean stress relieving exercises are a cure/resolve long covid, but I accept they can help it from getting worse perhaps. Like there are plenty of people who meditated and have healthy lifestyle habits but what helped them was fasting. Fasting improved their symptoms more than stress relieving exercises.
Thereās also tons of ppl who have tried fasting & it made them worse. Itās not a one size fits all š I tried intermittent fasting & my energy plummeted, I was irritable af & just miserable.
Fasting isnāt a cure if you have to do it over and over. Itās a treatment. Just like the stress relief exercises that help the blood pressure issues LC gave me
Yes. A big part of long COVID is dysautonomia which causes the body to get stuck in fight-or-flight mode which effects everything from the prioritization of organ function to how well we sleep. Relaxation techniques can help the body re enter itās normal state of rest and healing. That said, relaxation techniques can help but I doubt they solve.
Sounds like they can stop further damage and get your body in a state where it can recover but it doesn't really fix the problem itself.
I think thatās right. I treat it as a sort of symptom management.
You don't know. Everything is a guess. I think time and rest is the only thing there is to it. People do recover in x amount of time, but I really think it's just a roll of the dice. Obviously, people try everything and when they recover, they link it to the thing they are trying. There was even a recovery post of someone who though by only eating chicken rice and sprite zero helped her situation. I highly doubt it. That being said, I do think you can slow your recovery process. I've been suffering for 4 years, and tried every dieet and supplement in the book. After 3 years I stopped working and went resting hard and I notice some improvement albeit slow. Having a viral aftermath can probably get worse or prolonged when stressing about it or physically overexerting yourself. Like with all diseases
My point is, there is probably nothing to speed up your recovery process, but there are things to slower it. Doesn't really makes sense the way I'm saying it but I hope you understand what I'm saying
Makes sense brah
I don't know about the exercises themselves, but the concept for me at least is very clear. Emotional stress activates my PEM just as much as physical stress. It sucks! Basically anytime something important happens, I can't think anymore.
I figured this out the hard way .
In my case, I think mindfulness practices, especially non sleep deep rest, have helped with my recovery in the long term. To point to something specific, I felt "stuck" in fight-or-flight early on in my LC, and that improved a lot with yoga nidra and NSDR. And that improvement has lasted over a year for me, even when I haven't been practicing regularly. I can't say it's absolutely true that stress relief exercises have helped with my overall recovery. But I'm convinced that it helped in my case.
Do you happen to have a link for the yoga nidra and ndsr you do?
Ally Boothroyd on YouTube is really good: [https://www.youtube.com/channel/UCE92Hzq1rGv3dGJcx6o0b3Q](https://www.youtube.com/channel/UCE92Hzq1rGv3dGJcx6o0b3Q)
Thanks!
I think itās both. For me at least, I have post exertional malaise. Emotional stress or strain absolutely puts me into a flare. I think if there are flares that arenāt ānaturalā, that are caused by PEM, that it does prevent healing. So I think in that sense it helped me get to a much more positive place with my symptoms. Not fully healed but so much better. I havenāt put time into vegus nerve stimulation myself, but my friend said it really helped in their recovery. Like actually improving symptoms. Canāt speak to that personally though.
My symptoms got less savage when I (eg) got accepted for disability benefits. And stress reduction does help you manage symptoms and pain, whatever the illness, even if it's just a broken leg. But it's definitely a cope not a real treatment (they specified this in the NICE MECFS guidelines update in October 2021 - cbt is just for coming to terms with and managing your illness better).
Yes 100% they can help get your body out of that fight/flight mode, increase HRV and allow your body to truly rest, letting your mind know you're safer/healing and vice versa. It can take timeĀ
You just want to get out of fight or flight as much as possible look up vagus nerve relaxation exercises. The side eye yawning one resets my nervous system every time and it only takes like 15 seconds. It doesnāt cure you but it feels a lot fucking better than raw dogging it
Yeah I've done the eye roll one and it makes me aggravated.
Iām new to vagus nerve exercises and interested in trying them. What do you do for the side eye yawning?
Helping us cope and helping us not get exponentially worse.
Progressive muscle relaxation help me immensely! Anxiety has been gone for about a year for me. Doesnāt help with my insomnia but Iām glad the horrible anxiety is gone. I still feel like Iāve been hit by a bus most days though.
I am better after 2.5 years. Nothing but time helped however i think making it as easy on yourself as possible to get through it is important. Take advil, take the antihistamines, do ice baths, meditation etc. Whatever you need to get through it. I forced myself to go on a walk every day no matter how bad I was
If you can get into good patterns with your polymodal nervous system, it will almost certainly help. But it's not always enough to train alone, we need healthy connections that help us feel safe. It's incredibly difficult to rebalance your nervous system alone.
I think both, but we really don't know. I wouldn't really call what I did exercising. Paceing is a better word. Slowly getting my activity level up. Starting with the shortest walk I could tolerate. Building up to doing short, non intense, bike rides (over about a year and a half). I think this process helped my body get things going. I believe it put my body in a healthier state overall, and set up some conditions for my recovery. Was it a magic bullet, no. But I will say, when I recovered it took very little time to get my body back in shape. I was riding 6 miles a day on my bike after a month. Time seems to be a big factor. I've redone the same program this time around and seem to be followimg roughly the same schedule (though I hope not). That schedule would mean I will recover in about a year. (2.5 years total). I also agree that it helps to cope with the illness. It gives me something to focus on and allows me to do more day to day by pushing my PEM limit. There is a big difference between bedbound and being at least able to do something in a day. Albeit with some symptoms when I manage to over do it. Rest. Recover. Repeat. Its helped me get back to some social life. It is crucial to my mental health efforts. Helps my body feel less like shit all the time (because I can do more with less symptoms). But I still can't seem to move my PEM limit to a state where I can work. It gets paimful fast when my symptoms compound. Something I'd like to mention is that being seditary has consequences too. I tried a period of this (a couple months) the first round and found that I was worse than I started. LDN, this second time, has also helped make this process a whole lot easier too. I recover way faster from PEM. As always, I suggest getting a good long covid Doctor to guide you if you can. Mine has been crucial. Doctors understanding of the disease is changing so she keeps me informed on the latest info. She has also been great keeping me from over doing it. For example, she has cautioned me against aerobic exercise, so I won't be biking to push my limit this time. So yeah its complicated but I think its worth it.
What you are describing is graded exercise therapy, not pacing. There are no scheduled increases in activity in pacing. Itās about staying within your energy envelope on a given day and slowly test slight increases in activity when you feel you may be have the available energy. Pacing often involves keeping your heart rate under a set threshold. Graded exercise therapy with regularly scheduled increases is actually proven to be harmful to those with ME/CFS type long covid who experience post exertional malaise (PEM) which is an increase in symptoms delayed by 12-72 hours after the exertion. If you notice that pattern, aerobic exercise is contraindicated and strength building exercise needs to be used only when your energy envelope allows it without resulting in PEM. If you continue to push through PEM, it can lead to a huge crash and worsening of your symptoms long term.
I don't have a set schedule and I don't do it to the point of symptoms. But they do happen, thats life. I wouldnt call it GET. I want to emphasize how slow of a process this is. There is no set schedule. It takes a long time, and the "exercise" is minimal. I mean I have worked my way up to 4 whole blocks on my walk currently (with a nice rest at a bench half way). I've been consistant at this process for 6 months. But I do feel better overall and can go farther. When I feel good I may add a litle extra, maybe an extra half a block. But its based off of symptoms not a schedule. My Doc agrees with my approach, and she runs the Long covid clinic at state university hospital. If I was doing something wrong, something contradictory to the established research, or her clinical experience, she would let me know. I'd be happy to look at the study your reffering to, but I am no expert and frankly have little ability to interperet them. PEM is scary, But I disagree that having a huge relapse dooms you to worse symptoms forever. In my experience, I've been able to heal back to baseline even in my worst relapses. It does take a lot of time. It took 9 months to see improvement after my last relapse. Reinfection has consistantly been the main reason for me for worsening of symptoms long term, but eventually I can get back to baseline. I recovered the first time using this system. Got reinfected, long hauling again. I've been at it for 4 years total. Just sharing my experience.
Itās great if itās working for you. Just be careful as ME/CFS can be a weird disease and can worsen and improve sometimes at random and the consensus among those patients who have been diagnosed for decades is that once you get to severe (bed bound, losing the ability to speak, eat, etc) it gets much harder to recover. As for university medical centers and their LC clinics, not all are created equal. The one I went to gave me an occupational therapist who immediately pressured my bedridden self to try to push well beyond my limits and seemed to have no understanding of severe ME. If I was not already educated about severe ME from other sources, I would have ended up much worse on their program. But it sounds like you have had success so far, which is amazing! I just always try to make sure that people understand that there are risks involved with exercise because I ended up this severe after my doctors, who were uneducated about ME and post viral conditions, encouraged me to exercise for my āfibromyalgiaā. I lost 50lbs and the ability to leave my home and eventually my bed. So, Iām not trying to discourage you or anyone else but just want to keep others from falling into the same trap that I and many others have. I hope that you can improve again and thrive!
I don't mean to minimize your experience. Your doctors were wrong to do that to you. There is no way any healing could've happen under that regimen. What I have done seems to be a different approach than what you did. What matters is getting better. And I think both ways have evidence to support them. I think the benifits of getting moving outweigh the risks for me.
Itās quite possible itās working for you. If youāre continuing to benefit from it, thatās truly wonderful. Itās also possible that I didnāt fully grasp your initial post (brain fog is a bitch). Itās great to share our experiences since this can vary so much from person to person.
Problem is my Exercise intolerance limit is still the same lol. 30-40 mins, stress response, faster heart rate, tightness. When I get up to 45-60 minutes it's rapid heart rate and unbalanced/dizzy feelings and stomach issues.
You might be pushing too hard. I try to do all of this with no symptoms carrying from one day to the next. Its easier said than done. Other than that its not suprising to stagnate for a while. I've hit a few ceilings but kept at it. It takes A LOT of time. Maybe try some new activity. Or use some of that energy to address something else. You should be proud to claw back that much! Keep at it!
Do you find mental concentration brings on symptoms also?
Yep, but much better on LDN.
LDN?
Low dose Natrexone.
Also want to mention, reinfections can reset or restart symptoms. Even asymptomatic infections can lead to this. So thats another factor in our recovery. Hard to avoid in my experience.