I got long covid after my initial infection March 2020. I started off taking baths and the temperature dysregulation was difficult but eventually I recovered enough to work up to getting a shower chair and showering while sitting by 2021. I am still working towards standing while showering. Part of my recovery is juicing, taking supplements, keeping my body in sympathetic rest and digest mode, and sleep! Thats essential. I had a setback after suddenly losing my little sister july 2022. The grief relapsed my long covid. But I am being gentle with myself, grieving her loss and never losing hope for full recovery. The key I think to CFS or long covid or any number of disease recovery is healing unaddressed trauma.
I've read that drinking cold/ice water before you get into a shower keeps you from feeling like your going to pass out. I've tried this and it actually worked for me.
Yes, I bring a cold drink with a cap into the bathroom with me and grab a sip every once in a while in the shower. I use a shower chair. I do take very warm showers. I have trauma around cold showers that I should work on.
Cold showers stimulate your vagus nerve which is tied to regulating your nervous system. It activates your parasympathetic nervous system which is the calming side of your NS. I hate cold showers but I will try this. I also want to encourage people to explore their childhood trauma or *any trauma*, you have experienced. CFS is strongly correlated to those who have had trauma, especially childhood trauma. Somatic practices, when your nervous system is stronger, are probably your best bet.
It’s interesting you mentioned trauma. In the beginning stages I would listen to these meditation/hypnotherapy or therapeutic type music and I would have major breakdowns just absolutely sobbing out if nowhere. Before cfs I had a lot of issues with my childhood and now not so much. There’s always room for improvement and working on myself but the deep wounds are not so deep. The hurt and anger aren’t really there now. I have thought for a while now, that I’m going through this because it’s my body‘s way of forcing me to let go. That the universe basically said your not doing the work fast enough and we’re going to speed this up lol. Even now I have realized that if I notice I’m about to have an episode, if I just really let out a good cry sometimes it will stop and not turn into a full episode of me crashing. I’m aware that crying activates the parasmpathetic nervous system but it’s definitely more than that I think. Also I’m not someone who holds things in. So I find that even more strange, but maybe I do think I hold the serious stuff in. And this is my body‘s way of forcing myself to release it.
Cold water shower made me crash- not just dip. I was doing wim hoff.. then I did cold water on the face for revival and that will,kick in the mamilliam response. and TENS of the left ear instead. BPM wil go to 132 from 85 if I lifted my arms to shampoo..I found turning the water down really helped. Great tip.
1. I do as much washing before entering the shower as possible. (My face etc). It takes less energy. 2. Some days, I don’t wash everything in the shower. I do ½. Then the other half the next day. 3. Some days I only wash one thing. Wash my hair in the bath sink. Sit on the side of the bathtub to wash my feet, and thats all for that day. 4. I have to be very careful not to get even the least bit overheated. I leave the bathroom door open while showering so the heat can escape. 5. I use a hand-held shower head with an on/off inline water switch. I set the water temp using the wall spigot (room temp). I get all wet in about 15 seconds, I then immediately stop the water flow. Once washed, I rinse in about 2 minutes. I have found that if the total time of water flow is more than that, I crash the rest of the day and the next. 6. I use a box fan in the corner of the bathroom. Before I towel off, I let the breeze cool me off. I sit on the commode to minimize the energy of standing. Cold shower water is too intense for me.
a room temperature shower for 5-6 minutes would just floor me with exhaustion and a whole multitude of symptoms for the next 24 hours...feels like i am wearing a heavy painful exhausted garment
Lucky you, only 24 hours? If i am going to the bathroom it makes me 24 hours hardly breathing. Showering would take me out for months back to square one. If you overdo it, then you Start from zero. I think some people are not understanding that it is not the fear of a specific symptom, that all people with cfs have. I know sooooo many people which are not affraid of symptoms. It is the only fear we all have in commen and that is the fear of a crash and going back to square one. And all people with cfs do pacing why? Because the Crashs are Real. How can i avoid a crash if i am bedridden and everything leads to a crash. If i would take a shower i can wear diapers for the next 2-3 months. How csn i loose the fear of a crash if this is real?
Hi. I have fibromyalgia with bad fatigue. I definitely find doing personal care activities, walking and socialising hard work. I'm having to rely on carers as well. Love to see you do more videos on how to improve your mobility and personal care needs with a chronic illness. Xx ❤️
I do all your suggestions except regulating water temperature. Since I have other autoimmune illnesses the hot water feels so good on tender joints and muscle pain. I will give this up if I emerge from the shower less energy drained, everything is a balancing act. I have tried a few seconds of cold water. It doesn't feel good, but it does energize a bit. There is one more strategy that I use that was not mentioned, using pleasing sensory stimulation. I like scented soaps, body wash, and shower bombs. Between showers I use dry shampoo and body wipes. Every little thing helps.
Cold water is one of the things that turns off the sympathetic (fight/flight/freeze) nervous system and stimulates the parasympathetic (calming) nervous system. Even just laying a cold wash cloth on your face really helps. It's part of my night time routine.
@@alexanderwindh4830 If you go from hot to cold... yes it is a stressor. People with CFS have nervous systems that do not adapt quickly. So to get the benefits of cold therapy, we need to adjust the water temp in small increments. Working from your normal shower temp, decrease the temp with just micro adjustments. Over a period of months you could adapt your nervous system to cooler temps. You could apply this to the wash cloth method too. Of course this will happen easier if you are working on various ways to calm your nervous system. Things like alternate nostril breathing, and yoga nidra mediation. With every thing you do... do it in micro movements, micro increases.... over a long period of time.... months. Even things like household chores.... my bathroom may take me 2 days to clean... in 6 x 3-5 minute sessions (total) with rests in-between over the course of 2 days... but it gets cleaned. Be flexible and adaptable... as the way you feel changes within your day, but also from day to day, and week to week. Best Wishes Alex❤
@@Flwer479 It does... if you work in very small increments, and not too hot or not too cold. Slowly increasing every 3-4weeks in very small amounts, consistently over time. However, everyone is different. Some may tolerate more heat/more cold, some may take longer to adjust. It's a long game.... might take years to make the transition. And cold water is not the only thing that calms your nervous system... breathing exercises,meditation, yoga nidra, doing crafts, time with pets, time out in nature, reading. It varies for everyone. The key is to practice consistently over time to see change.
Such an important topic! I think twice before I get a shower, and it can be frustrating to feel so tired afterwards. And the hot water is also agonizing.
i've had covid twice and it made me develop POTS and made my fibromyalgia so much worse. i also have very severe depression and i'm autistic, so i often avoid showering for a long time. thank you so much for these tips, i'm about to go shower and i'll try these out ❤
I'm glad you found the video helpful! 🌟 Repetition can be a powerful tool for understanding and integrating information. Keep up the positive reinforcement! 🧠💪
I got post viral syndrome in 2022. I had no idea I was having POTs, I would nearly pass out in the shower or going up the stairs. I couldn’t shampoo my hair I was so weak. 2yrs later I still get really bad flares and was diagnosed with CFS. It’s not easy to accept that you are unable to do what you used to do but we have to keep going.
I have some videos that may help your situation and dealing with those pots symptoms, check them out. Hopefully these help! Heart Rate Issues: th-cam.com/video/k67xEsLe11M/w-d-xo.html Internal Vibrations and Tremors: th-cam.com/video/4wxdebRbbZA/w-d-xo.html
I really struggle to wash my hair because my arms are super weak. I try using a brush when I can but it still wipes me out. I sweat so much in the shower that I just don't feel clean after anymore
I was bedridden a month ago, slowly building up. I can take a shower approximately each week. It actually goes quite well, I’m able to wash my hair, but I’m still too anxious about the whole thing. Like you said my heart rate goes up, I’m shaking a little bit, especially when I try to dry myself and put my clothes on… also because I lost so much muscle in my legs. So it scares me a little (some people say you have to be very careful to avoid high heart rates). Maybe I should try to take showers and little bit more regularly to get my nervous system used to it.
So glad you discuss this topic. I was feeling so guilty and ashamed at not taking regular showers due to the discomfort of dizziness and fear of falling. I went three weeks with only sponge baths and shampoos at the sink. I'm 70yo with osteoporosis so a fall in the shower would be dangerous to say the least. I've gotten into a schedule of twice weekly coolish showers lasting four minutes or so. I'm retired and not too active anymore due to other health issues so I can live with it.
Id LOVE a video on your suggestions for a morning routine. I watched your video on mornings but I’d love to know what you did that helped. I tend to grab my phone to distract me from the awfulness but i know that’s prob not helpful. Feels like ALL the faulty programs are running upon waking. THANKYOU for your content! I’m slowly making my way through it!
Well. First of all, we can't digest food properly. Many people have digestive issues. Then there is the 'lack of repair and regeneration' problem. What I have seen with me personally that cortisol is main driver too. As you can't digest and repair properly, body starts to use your own tissue for energy. Through some mechanisms cortisol can break your muscles and use those as energy source. There will be probably more answers to this. I have also seen people gain significant amount of weight. So not all people are the same.
@@tiffany8154 nobody knows, truly. Our nervous system is out of whack. That basically regulates every other process in the body. Nobody knows why exactly. That's the problem
The body can not repair and regenerate when is in constant state of chronic stress, fight or flight response( sympathetic nervous system). The body can repair only being in homeostasis ( regulated nervous system where is fluent transition from sympathetic nervous system to parasympathetic nervous system and vice versa). Regeneration is setting when we are in parasympathetic nervous system.
I completely understand that cold showers can be challenging for individuals with Raynaud syndrome. It's important to prioritize your comfort and well-being. If cold showers are not suitable for you, there are alternative options you can explore to enhance your shower experience, remembering that everyone's situation is unique, and it's important to find what works best for you.
Do you expect your heart rate to return to complete normal? I know with myself I'm often 90 plus BPM laying down. Previously I used to struggle during exercise to even getting it that high. Last time I exercised I was at 170 BPM I couldn't believe it.
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I got long covid after my initial infection March 2020. I started off taking baths and the temperature dysregulation was difficult but eventually I recovered enough to work up to getting a shower chair and showering while sitting by 2021. I am still working towards standing while showering. Part of my recovery is juicing, taking supplements, keeping my body in sympathetic rest and digest mode, and sleep! Thats essential. I had a setback after suddenly losing my little sister july 2022. The grief relapsed my long covid. But I am being gentle with myself, grieving her loss and never losing hope for full recovery. The key I think to CFS or long covid or any number of disease recovery is healing unaddressed trauma.
I've read that drinking cold/ice water before you get into a shower keeps you from feeling like your going to pass out. I've tried this and it actually worked for me.
Different things work for different people. I say as long as it works for you and makes you feel better - DO IT!
Yes, I bring a cold drink with a cap into the bathroom with me and grab a sip every once in a while in the shower. I use a shower chair. I do take very warm showers. I have trauma around cold showers that I should work on.
Cold showers stimulate your vagus nerve which is tied to regulating your nervous system. It activates your parasympathetic nervous system which is the calming side of your NS. I hate cold showers but I will try this. I also want to encourage people to explore their childhood trauma or *any trauma*, you have experienced. CFS is strongly correlated to those who have had trauma, especially childhood trauma. Somatic practices, when your nervous system is stronger, are probably your best bet.
It’s interesting you mentioned trauma. In the beginning stages I would listen to these meditation/hypnotherapy or therapeutic type music and I would have major breakdowns just absolutely sobbing out if nowhere. Before cfs I had a lot of issues with my childhood and now not so much. There’s always room for improvement and working on myself but the deep wounds are not so deep. The hurt and anger aren’t really there now. I have thought for a while now, that I’m going through this because it’s my body‘s way of forcing me to let go. That the universe basically said your not doing the work fast enough and we’re going to speed this up lol. Even now I have realized that if I notice I’m about to have an episode, if I just really let out a good cry sometimes it will stop and not turn into a full episode of me crashing. I’m aware that crying activates the parasmpathetic nervous system but it’s definitely more than that I think. Also I’m not someone who holds things in. So I find that even more strange, but maybe I do think I hold the serious stuff in. And this is my body‘s way of forcing myself to release it.
Cold water shower made me crash- not just dip. I was doing wim hoff.. then I did cold water on the face for revival and that will,kick in the mamilliam response. and TENS of the left ear instead. BPM wil go to 132 from 85 if I lifted my arms to shampoo..I found turning the water down really helped. Great tip.
1. I do as much washing before entering the shower as possible. (My face etc). It takes less energy.
2. Some days, I don’t wash everything in the shower. I do ½. Then the other half the next day.
3. Some days I only wash one thing. Wash my hair in the bath sink. Sit on the side of the bathtub to wash my feet, and thats all for that day.
4. I have to be very careful not to get even the least bit overheated. I leave the bathroom door open while showering so the heat can escape.
5. I use a hand-held shower head with an on/off inline water switch. I set the water temp using the wall spigot (room temp). I get all wet in about 15 seconds, I then immediately stop the water flow. Once washed, I rinse in about 2 minutes. I have found that if the total time of water flow is more than that, I crash the rest of the day and the next.
6. I use a box fan in the corner of the bathroom. Before I towel off, I let the breeze cool me off. I sit on the commode to minimize the energy of standing. Cold shower water is too intense for me.
a room temperature shower for 5-6 minutes would just floor me with exhaustion and a whole multitude of symptoms for the next 24 hours...feels like i am wearing a heavy painful exhausted garment
Lucky you, only 24 hours? If i am going to the bathroom it makes me 24 hours hardly breathing. Showering would take me out for months back to square one. If you overdo it, then you Start from zero. I think some people are not understanding that it is not the fear of a specific symptom, that all people with cfs have. I know sooooo many people which are not affraid of symptoms. It is the only fear we all have in commen and that is the fear of a crash and going back to square one. And all people with cfs do pacing why? Because the Crashs are Real. How can i avoid a crash if i am bedridden and everything leads to a crash. If i would take a shower i can wear diapers for the next 2-3 months. How csn i loose the fear of a crash if this is real?
Hi. I have fibromyalgia with bad fatigue. I definitely find doing personal care activities, walking and socialising hard work. I'm having to rely on carers as well. Love to see you do more videos on how to improve your mobility and personal care needs with a chronic illness. Xx ❤️
Me too friend 💜
I do all your suggestions except regulating water temperature. Since I have other autoimmune illnesses the hot water feels so good on tender joints and muscle pain. I will give this up if I emerge from the shower less energy drained, everything is a balancing act. I have tried a few seconds of cold water. It doesn't feel good, but it does energize a bit. There is one more strategy that I use that was not mentioned, using pleasing sensory stimulation. I like scented soaps, body wash, and shower bombs. Between showers I use dry shampoo and body wipes. Every little thing helps.
Good to know 😁
Cold water is one of the things that turns off the sympathetic (fight/flight/freeze) nervous system and stimulates the parasympathetic (calming) nervous system. Even just laying a cold wash cloth on your face really helps. It's part of my night time routine.
Cold water is a stressor. It's. A huge stressor.
@@alexanderwindh4830 If you go from hot to cold... yes it is a stressor. People with CFS have nervous systems that do not adapt quickly. So to get the benefits of cold therapy, we need to adjust the water temp in small increments. Working from your normal shower temp, decrease the temp with just micro adjustments. Over a period of months you could adapt your nervous system to cooler temps. You could apply this to the wash cloth method too. Of course this will happen easier if you are working on various ways to calm your nervous system. Things like alternate nostril breathing, and yoga nidra mediation. With every thing you do... do it in micro movements, micro increases.... over a long period of time.... months. Even things like household chores.... my bathroom may take me 2 days to clean... in 6 x 3-5 minute sessions (total) with rests in-between over the course of 2 days... but it gets cleaned. Be flexible and adaptable... as the way you feel changes within your day, but also from day to day, and week to week. Best Wishes Alex❤
Doesn't work for ME/CFS
@@Flwer479 It does... if you work in very small increments, and not too hot or not too cold. Slowly increasing every 3-4weeks in very small amounts, consistently over time. However, everyone is different. Some may tolerate more heat/more cold, some may take longer to adjust. It's a long game.... might take years to make the transition. And cold water is not the only thing that calms your nervous system... breathing exercises,meditation, yoga nidra, doing crafts, time with pets, time out in nature, reading. It varies for everyone. The key is to practice consistently over time to see change.
They do small very light weight shower stools that fit in most baths too which are handy
Those are super helpful!
Couldn't have showered without one
Such an important topic! I think twice before I get a shower, and it can be frustrating to feel so tired afterwards. And the hot water is also agonizing.
Tired is one thing, crashing for weeks without being able to hardly breathe that is horror. After that you are not going to showering.
i've had covid twice and it made me develop POTS and made my fibromyalgia so much worse. i also have very severe depression and i'm autistic, so i often avoid showering for a long time. thank you so much for these tips, i'm about to go shower and i'll try these out ❤
Great video, really helpful. I need to watch several of your videos every single day, just to really get this into every braincell.
I'm glad you found the video helpful! 🌟 Repetition can be a powerful tool for understanding and integrating information. Keep up the positive reinforcement! 🧠💪
I got post viral syndrome in 2022. I had no idea I was having POTs, I would nearly pass out in the shower or going up the stairs. I couldn’t shampoo my hair I was so weak. 2yrs later I still get really bad flares and was diagnosed with CFS. It’s not easy to accept that you are unable to do what you used to do but we have to keep going.
I have some videos that may help your situation and dealing with those pots symptoms, check them out. Hopefully these help!
Heart Rate Issues: th-cam.com/video/k67xEsLe11M/w-d-xo.html
Internal Vibrations and Tremors: th-cam.com/video/4wxdebRbbZA/w-d-xo.html
I really struggle to wash my hair because my arms are super weak. I try using a brush when I can but it still wipes me out. I sweat so much in the shower that I just don't feel clean after anymore
I was bedridden a month ago, slowly building up. I can take a shower approximately each week. It actually goes quite well, I’m able to wash my hair, but I’m still too anxious about the whole thing. Like you said my heart rate goes up, I’m shaking a little bit, especially when I try to dry myself and put my clothes on… also because I lost so much muscle in my legs. So it scares me a little (some people say you have to be very careful to avoid high heart rates).
Maybe I should try to take showers and little bit more regularly to get my nervous system used to it.
You got this! 💪
So glad you discuss this topic. I was feeling so guilty and ashamed at not taking regular showers due to the discomfort of dizziness and fear of falling. I went three weeks with only sponge baths and shampoos at the sink. I'm 70yo with osteoporosis so a fall in the shower would be dangerous to say the least. I've gotten into a schedule of twice weekly coolish showers lasting four minutes or so. I'm retired and not too active anymore due to other health issues so I can live with it.
I feel like cold showers before bed wake me up too much
Id LOVE a video on your suggestions for a morning routine. I watched your video on mornings but I’d love to know what you did that helped. I tend to grab my phone to distract me from the awfulness but i know that’s prob not helpful. Feels like ALL the faulty programs are running upon waking. THANKYOU for your content! I’m slowly making my way through it!
You got this 👊🏻
How to showering if you can only sit for 2 Minutes?
@cfsrecovery I was wondering if you can do a video on why as we progress into cfs we start losing weight even if we’re eating
Well. First of all, we can't digest food properly. Many people have digestive issues.
Then there is the 'lack of repair and regeneration' problem.
What I have seen with me personally that cortisol is main driver too.
As you can't digest and repair properly, body starts to use your own tissue for energy. Through some mechanisms cortisol can break your muscles and use those as energy source.
There will be probably more answers to this.
I have also seen people gain significant amount of weight. So not all people are the same.
@@djVania08 thank you! Why is there a lack of repair and regeneration do you know why? I’ve noticed all of these things but no one says why
@@tiffany8154 nobody knows, truly. Our nervous system is out of whack. That basically regulates every other process in the body.
Nobody knows why exactly. That's the problem
@@djVania08 got it that makes sense thank you!
The body can not repair and regenerate when is in constant state of chronic stress, fight or flight response( sympathetic nervous system). The body can repair only being in homeostasis ( regulated nervous system where is fluent transition from sympathetic nervous system to parasympathetic nervous system and vice versa). Regeneration is setting when we are in parasympathetic nervous system.
I can't even sweep or clean like I use to
Good video my man, like always! Nice View behind you!
Yes. Cold showers, dunks are great. In so many ways.
I can't take cold shower because off my Raynaud syndrome. It's horrible !
I completely understand that cold showers can be challenging for individuals with Raynaud syndrome. It's important to prioritize your comfort and well-being. If cold showers are not suitable for you, there are alternative options you can explore to enhance your shower experience, remembering that everyone's situation is unique, and it's important to find what works best for you.
Yes showers wipe me out. I’m on my 3rd year. I never liked hot showers.
I totally understand. How long have you been experiencing this?
Omg I feel the same way in shower
Do you expect your heart rate to return to complete normal? I know with myself I'm often 90 plus BPM laying down. Previously I used to struggle during exercise to even getting it that high. Last time I exercised I was at 170 BPM I couldn't believe it.
th-cam.com/video/k67xEsLe11M/w-d-xo.html
Why do I feel like I’m going to faint in the shower
How long have you been experiencing this?
@@cfsrecovery it started back in April.
Is it with hot showers only?
❤❤❤
the editing of the intro is pretty overstimulating
Thanks for your insight. 🙂
Highly annoying music, if that can be called music.
Relax