I LOVE my garmin for pacing. I find the times it tells me i'm well when i feel bad is when my HRV is high for a bad reason- because i've gone into deep recovery mode from extreme stress. The watches haven't yet figured out how to note the difference betwen a positive or negative high HRV score. It just sees high HRV and tells you you're doing great.
I recommend you try Whoop. I've been wearing it for over a year (only got diagnosed with ME CFS 2 weeks ago mind you) and it's far more in depth than a lot of other trackers. I like that it's focus is on recovery and not on pushing your limits. I find it's very accurate and allows me to see when I'm most likely to have to rest or when I'm trending towards a crash. It's like a canary in a coal mine.
@@lucymiller9569 I was previously a runner so already had a Garmin, and I hope to get back to that soon! I have 10 years of data on my body in Garmin, so it's nice to know what my 'norm' looks like and compare current data. If I'm unable to run again I would definitely consider switching to something geared more towards energy tracking vs sport. I would actually love an oura ring but refuse to pay a subscription!
❤ Dave’s intuitive healing. I think he’s spot on with the metabolic acidosis. I am thinking this chronic acidosis might be creating the mast cell problems and POTS. My oxygen taken upon immediately lying down can drop as low as 82-84% and I am unaware /don’t feel this other than overall feeling poor. I took chlorophyll for 5 months before oxygen levels rose. Now most of the time the “rest” drop is in the lower 90% and doesn’t last very long. However I’ve found that taking my oxygen levels before bed to be the best predictor on how tomorrow will go. I also appreciate hearing the stress numbers as I have no idea what is normal. I used to be all normal/medium stress. Sometimes medium stress feels energetic and sometimes it feels terrible. One definitely has to view wearables as “friendly” reminders or informers. Raelan, thank you also. The mind body part is what I am having trouble “getting”. So I am trying to listen to as many different sources and will repeat doing this until I can get it. I do think raising kids makes this near impossible as one is “on” 24/7. I am pretty sure mind body work has something to do with “being” and not “doing” and can’t seem to drop being a “doer”.
I did some of this, using fitness tracking watches and using the visible arm band for over a year. It definitely made me feel empowered and in control, and I raved about it for a really long time. But in reality, my symptoms gradually got worse over that time, and although I wasn't as stressed about over doing it, I found myself able to do less and less. I think the tracking actually stressed my nervous system out more, but also gave me a false sense of control and reassurance that meant I didn't notice for a really long time that it was actually making my symptoms worse. I have now abandoned this kind of tracking, and started using a mind-body approach instead, and have seen a drastic improvement already. This is just my experience though. I hope it works out for David, but I would approach these methods with some caution.
Wow! That's all very interesting. I have a Heart Math Device that I rarely use.. I must get it out and start doing some tracking. Congratulations on how far you've come, David, and thanks for sharing your tips! Thanks for another great interview, Raelan!
That is some people's experience , even those who aren't ill stress over their sleep score. I guess it depends on your personality type wether you obsess and stress about it or not,
I used to do all of this too, and honestly it did make me worse, and stressed my nervous system. I felt more empowered for sure, but I ended up being able to do less and gradually got worse over the year I was doing it. So glad I got out of that, wouldn't recommend it to be honest. It was interesting that he said he wasn't worried about doing too much, but then also used the word "scary" to describe his experience of tracking his heart rate data. Hopefully it works out for him though, but it's definitely not for me.
Thanks for sharing, David. All the best on your recovery journey! Thanks, Raelan, good questions. I can see these tools helping on the one hand but on the other hand, I feel they would add to stress levels too. For example, if If my ring or device is telling me I didn't sleep well, but am doing everything 'right' that would have me stressing about that bit unable to fix it. It could be easy to obsess about the readings and symptoms...it would need balance and care ❤
I use a Garmin watch. I don't notice as specific patterns as David or before I crash but I notice when my body is more fatigued and stressed and can pull back. It doesn't capture my sensory overload so there's limitations. And I'd say it works best if you're pacing within your energy envelope and sort of doing the same thing every day.
Thank you Raelan! A very good piece of advice to take away, make sure your NOT AT YOUR BEST when you go to the doctor, they need crisis or near crisis numbers for their checklists to work. Unless you think it is going to do you in, that pizza and icecream binge a day or two before might be helpful. Try to find that flare balanace, diagnosis is NOT a cure, and flares may NOT be benign. Use good judgement and always look out for what you WANT out of a doctor and target communication and all parts of the visit towards that ONE THING. Doctors typically have a 5-10 min attention span to listen, some studies its 3 minutes to get your important message out, then they are back to biz as normal. You aren't on their normal scale if you are still searching. Targeted communication, proactive numbers/monitoring, and bullet points. If you don't show you care, they don't. Also emotions in a physician counseling is only seen as a psyche problem, find a way to not emote. I know, it sucks, its hard. Look for other strategies. And be prepared to fire a doctor that isn't measuring up. Good Luck and Good Health!
I'm astonished that it worked like that. From my own experience healing happens beyond trying controlling everything. But maybe it gave him some kind of safety. Anyway I'm glad it worked for you David!
I also deal with the histamine/MCAS issues. If I eat high histamine foods for two or three days in a row, it’ll lead to a bad crash. No pizza and beer for me unfortunately. Good interview.
Search Morley Robbins. Histamine is cleared but a copper activated enzyme and many are low in dietary copper. Startpage search ‘ceruloolasmin, schizophrenia, rhesus and histamine’ to pull up what I believe might be the most important research paper in history.
You mentioned readiness scores and how they don’t always seem correct, what I’d say is that a low readiness score would mean be careful that day as you may not feel too bad but if you push you will also a higher readiness score may not be on a day you feel your best but if you nurture self care on that day you get more the next if that makes sense?! I had a really bad night and readiness score of 1 last week but pushed through as I didn’t feel too bad but woke the next night with terrible flu like symptoms and felt terrible the next day! If I’d have nurtured on the day with the 1 score I’d have been fine the next day. It’s a good learning tool! I use Fitbit ❤
A heart rate of 50 while walking doesn't sound like a POTS symptom at all!!! That would never happen to me. I'm a bit technology challenged haha but I will try the heart rate monitoring because that's something I know how to do and see if it helps. Thanks David.
I‘ve also made the experience, that my heartrate drops a lot when I really overdid it. And I think the explanation with POTS is, that there is not enough blood coming back to the heart due to the preload failure of POTS. In the beginning the heart compensates for it by beating quicker than healthy peoples hearts, but if the failure increases it can’t do this anymore because there is simply not enough blood to be pumped anymore. And it would risk it’s own survival by trying to beat anyway, it also needs this blood to produce it’s own energy. (Prof Systrom, Harvard showed the preload failure very impressively: th-cam.com/video/1LK6c_jqHd0/w-d-xo.htmlsi=AjyGD5IUE9KL6yrP )
I find this fascinating particularly as chronic fatigue is a diagnosis of exclusion. If medical/pharmacuetal people were interested I'm sure a device could be developed to support recovery. An actual monitor that validates the diagnosis plus aids recovery, wouldn't that be so cool!!!
@@Akemaaa it uses algorithms based on these. Check out Garmin's info. They never fully explain it but I've been using one for nearly 4 years and it is a useful guide (but should never replace taking how *you* feel). David explains well how he uses it. It's slightly different for everyone as our profiles of illness vary and our body statistics are different.
LC at the beginning, when it all kicked off here. Also in England, have PEM and chronic fatigue. My LC clinic consisted of watching videos and a few blood tests, nothing else. My HRV is all over the place, Garmin watch says my stress is high every day, haven’t felt fully rested in a quite while. Garmin’s algorithm for body battery does at least tell me when I’m more tired, except it’s always low at the moment and I’ve no idea why. Some days I’m able to do more, some not. I go by how I feel as unfortunately the data doesn’t change much on my watch. I’ve tried meditation, therapy, journaling, breathing exercises, cold showers, sauna. All I can think of apart from medication. Nothing seems to help and GP advises there’s nothing they can do. Have also tried Pulse Ox. Mine occasionally dips, then evens out. Fortunately doesn’t stay low.
What I can‘t see in your description of what you did is the by far most important thing: PACING And this doesn‘t mean cutting your activieites by, let‘s say, half, but finding the activities that don’t stress you out anymore. Start with lying down most of the day, and just get up for the toilet or having a small meal. It won’t get better as long as you try to „exercise it away“
"Secret cardiotoxic effect of mrna vaccines" and "innate immune supression of mrna" "class switch igg4 mrna" studies. Best wishes as a fellow vax injured.
Whilst I agree with you, for some people who are less sensitive to how they are feeling, these gadgets may be able to teach them how to feel. With the end goal of not needing to use gadgets.
STRUGGLING THROUGH LONG VIDEOS?
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I LOVE my garmin for pacing.
I find the times it tells me i'm well when i feel bad is when my HRV is high for a bad reason- because i've gone into deep recovery mode from extreme stress. The watches haven't yet figured out how to note the difference betwen a positive or negative high HRV score. It just sees high HRV and tells you you're doing great.
I recommend you try Whoop. I've been wearing it for over a year (only got diagnosed with ME CFS 2 weeks ago mind you) and it's far more in depth than a lot of other trackers. I like that it's focus is on recovery and not on pushing your limits. I find it's very accurate and allows me to see when I'm most likely to have to rest or when I'm trending towards a crash. It's like a canary in a coal mine.
@@lucymiller9569 I was previously a runner so already had a Garmin, and I hope to get back to that soon! I have 10 years of data on my body in Garmin, so it's nice to know what my 'norm' looks like and compare current data. If I'm unable to run again I would definitely consider switching to something geared more towards energy tracking vs sport. I would actually love an oura ring but refuse to pay a subscription!
❤ Dave’s intuitive healing. I think he’s spot on with the metabolic acidosis. I am thinking this chronic acidosis might be creating the mast cell problems and POTS. My oxygen taken upon immediately lying down can drop as low as 82-84% and I am unaware /don’t feel this other than overall feeling poor. I took chlorophyll for 5 months before oxygen levels rose. Now most of the time the “rest” drop is in the lower 90% and doesn’t last very long. However I’ve found that taking my oxygen levels before bed to be the best predictor on how tomorrow will go. I also appreciate hearing the stress numbers as I have no idea what is normal. I used to be all normal/medium stress. Sometimes medium stress feels energetic and sometimes it feels terrible. One definitely has to view wearables as “friendly” reminders or informers.
Raelan, thank you also. The mind body part is what I am having trouble “getting”. So I am trying to listen to as many different sources and will repeat doing this until I can get it. I do think raising kids makes this near impossible as one is “on” 24/7. I am pretty sure mind body work has something to do with “being” and not “doing” and can’t seem to drop being a “doer”.
I did some of this, using fitness tracking watches and using the visible arm band for over a year. It definitely made me feel empowered and in control, and I raved about it for a really long time. But in reality, my symptoms gradually got worse over that time, and although I wasn't as stressed about over doing it, I found myself able to do less and less. I think the tracking actually stressed my nervous system out more, but also gave me a false sense of control and reassurance that meant I didn't notice for a really long time that it was actually making my symptoms worse. I have now abandoned this kind of tracking, and started using a mind-body approach instead, and have seen a drastic improvement already. This is just my experience though. I hope it works out for David, but I would approach these methods with some caution.
Same here! Got the Curable app
What is the exact mind-body system you use, please?
Thankyou David and Raelan.
David is a natural scientist!
I would have a panic attack checking all of this! I am glad it works for you!!!❤
Wow! That's all very interesting. I have a Heart Math Device that I rarely use.. I must get it out and start doing some tracking. Congratulations on how far you've come, David, and thanks for sharing your tips! Thanks for another great interview, Raelan!
So exciting, Jo! I’d love to hear your thoughts once you try it out for setback predictions. 🧡 🧡
What is that device, and how is it helping you now?
Gosh, it must be a nightmare tracking all this on a daily basis. It must cause more stress on the nervous system.
That is some people's experience , even those who aren't ill stress over their sleep score. I guess it depends on your personality type wether you obsess and stress about it or not,
Yes, I agree
I used to do all of this too, and honestly it did make me worse, and stressed my nervous system. I felt more empowered for sure, but I ended up being able to do less and gradually got worse over the year I was doing it. So glad I got out of that, wouldn't recommend it to be honest. It was interesting that he said he wasn't worried about doing too much, but then also used the word "scary" to describe his experience of tracking his heart rate data. Hopefully it works out for him though, but it's definitely not for me.
Thanks for sharing, David. All the best on your recovery journey! Thanks, Raelan, good questions. I can see these tools helping on the one hand but on the other hand, I feel they would add to stress levels too. For example, if If my ring or device is telling me I didn't sleep well, but am doing everything 'right' that would have me stressing about that bit unable to fix it. It could be easy to obsess about the readings and symptoms...it would need balance and care ❤
I use a Garmin watch. I don't notice as specific patterns as David or before I crash but I notice when my body is more fatigued and stressed and can pull back. It doesn't capture my sensory overload so there's limitations. And I'd say it works best if you're pacing within your energy envelope and sort of doing the same thing every day.
Thank you Raelan! A very good piece of advice to take away, make sure your NOT AT YOUR BEST when you go to the doctor, they need crisis or near crisis numbers for their checklists to work. Unless you think it is going to do you in, that pizza and icecream binge a day or two before might be helpful. Try to find that flare balanace, diagnosis is NOT a cure, and flares may NOT be benign. Use good judgement and always look out for what you WANT out of a doctor and target communication and all parts of the visit towards that ONE THING. Doctors typically have a 5-10 min attention span to listen, some studies its 3 minutes to get your important message out, then they are back to biz as normal. You aren't on their normal scale if you are still searching. Targeted communication, proactive numbers/monitoring, and bullet points. If you don't show you care, they don't. Also emotions in a physician counseling is only seen as a psyche problem, find a way to not emote. I know, it sucks, its hard. Look for other strategies. And be prepared to fire a doctor that isn't measuring up. Good Luck and Good Health!
Very interesting and helpful. Thanke you, David! I like your spirit of research!
I'm astonished that it worked like that. From my own experience healing happens beyond trying controlling everything.
But maybe it gave him some kind of safety. Anyway I'm glad it worked for you David!
I also deal with the histamine/MCAS issues. If I eat high histamine foods for two or three days in a row, it’ll lead to a bad crash. No pizza and beer for me unfortunately. Good interview.
Search Morley Robbins. Histamine is cleared but a copper activated enzyme and many are low in dietary copper.
Startpage search ‘ceruloolasmin, schizophrenia, rhesus and histamine’ to pull up what I believe might be the most important research paper in history.
You mentioned readiness scores and how they don’t always seem correct, what I’d say is that a low readiness score would mean be careful that day as you may not feel too bad but if you push you will also a higher readiness score may not be on a day you feel your best but if you nurture self care on that day you get more the next if that makes sense?!
I had a really bad night and readiness score of 1 last week but pushed through as I didn’t feel too bad but woke the next night with terrible flu like symptoms and felt terrible the next day! If I’d have nurtured on the day with the 1 score I’d have been fine the next day. It’s a good learning tool! I use Fitbit ❤
I really enjoyed his stories. Having a healthy friend to do experiments on would be fantastic. 😅
Miguel has left the chat 😂 if u know u know , glad it works for you Dave, all the best 😁👍
A heart rate of 50 while walking doesn't sound like a POTS symptom at all!!! That would never happen to me. I'm a bit technology challenged haha but I will try the heart rate monitoring because that's something I know how to do and see if it helps. Thanks David.
I‘ve also made the experience, that my heartrate drops a lot when I really overdid it. And I think the explanation with POTS is, that there is not enough blood coming back to the heart due to the preload failure of POTS. In the beginning the heart compensates for it by beating quicker than healthy peoples hearts, but if the failure increases it can’t do this anymore because there is simply not enough blood to be pumped anymore. And it would risk it’s own survival by trying to beat anyway, it also needs this blood to produce it’s own energy.
(Prof Systrom, Harvard showed the preload failure very impressively: th-cam.com/video/1LK6c_jqHd0/w-d-xo.htmlsi=AjyGD5IUE9KL6yrP )
@@annsan1722 Thanks a lot. I haven't heard potsies talk about this before but it makes sense.
Is long COVID same as vaccine injury? How can you tell them apart?
I find this fascinating particularly as chronic fatigue is a diagnosis of exclusion. If medical/pharmacuetal people were interested I'm sure a device could be developed to support recovery. An actual monitor that validates the diagnosis plus aids recovery, wouldn't that be so cool!!!
Intresting! How does the watch measure the body energy? 🤔
Using HRV and heart rate and recovery
@@scarletfalanges thank you, but i still dont understand how it can rate how much energy is left in the body 🤔
@@Akemaaa it uses algorithms based on these. Check out Garmin's info. They never fully explain it but I've been using one for nearly 4 years and it is a useful guide (but should never replace taking how *you* feel).
David explains well how he uses it. It's slightly different for everyone as our profiles of illness vary and our body statistics are different.
By using an algorithm. Hence it's not infallible but it's pretty good as an indicator and general guide.
@@chaimagpie thank you!:)
LC at the beginning, when it all kicked off here. Also in England, have PEM and chronic fatigue. My LC clinic consisted of watching videos and a few blood tests, nothing else.
My HRV is all over the place, Garmin watch says my stress is high every day, haven’t felt fully rested in a quite while. Garmin’s algorithm for body battery does at least tell me when I’m more tired, except it’s always low at the moment and I’ve no idea why.
Some days I’m able to do more, some not. I go by how I feel as unfortunately the data doesn’t change much on my watch.
I’ve tried meditation, therapy, journaling, breathing exercises, cold showers, sauna. All I can think of apart from medication. Nothing seems to help and GP advises there’s nothing they can do.
Have also tried Pulse Ox. Mine occasionally dips, then evens out. Fortunately doesn’t stay low.
Does sauna make you feel worse? Did you do infrared sauna or a traditional one?
I’m the same as you, nothing seems to help and the NHS don’t care
@@regina6838 traditional sauna. I can’t honestly tell a difference, but I go anyway with any hopes of improvement by reducing inflammation.
@@cb77153 That's great! I sure it's helping your overall health and in the long run you'll be much healthier for it. 💐
What I can‘t see in your description of what you did is the by far most important thing: PACING
And this doesn‘t mean cutting your activieites by, let‘s say, half, but finding the activities that don’t stress you out anymore. Start with lying down most of the day, and just get up for the toilet or having a small meal. It won’t get better as long as you try to „exercise it away“
Did you mention a discount code for the Ourq ring? Like to get one but pretty spendy. Thanks.
Strange you should say that David...my heart rate is pretty low too
You’re going to “invite him” (your husband) to check out the patterns on the Aura ring after eating processed meats 😹👍
"Secret cardiotoxic effect of mrna vaccines" and "innate immune supression of mrna" "class switch igg4 mrna" studies. Best wishes as a fellow vax injured.
It think tracking causes too much stress. You need to listen to your own body fully and build resilience without these devices
Whilst I agree with you, for some people who are less sensitive to how they are feeling, these gadgets may be able to teach them how to feel. With the end goal of not needing to use gadgets.
This doesn't work for me when my work is 100 per physical. I have no choice