The Bedridden with CFS Survival Guide - Video Series | CHRONIC FATIGUE SYNDROME

[@cfsrecovery]

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[@mirandaandrea8215]

I love what your doing Miguel! This stuff sounds so simple but it isn’t! it’s so helpful to listen to you! ❤

[@cfsrecovery]

Thank you so much! 🙌 I'm glad you find the information helpful. Sometimes, the simplest things can make a big difference. Keep taking positive steps on your journey! ❤️😊

[@NoNo-zf6tz]

You used the exact words I've felt and described for many years.

[@cfsrecovery]

Glad it was relatable!

[@stoner2055]

I really like your videos glad I found you brother , long story short , I’ve been suffering for over 15 years with back injury , ended up having a 3 level 360 fusion lumber surgery, a few months in being bedridden the level directly above my fusion started killing me , what’s CRAZIER is my neck / back of skull started KILLING ME …. The type of pain that made me shake uncontrollably, very dark place for YEARS !!! Im doing much better FINALLY but still suffer from debilitating pain in the places I described , doctor said I had “ instability in my neck as well wanted to fuse it too … I said ABSOLUTELY NOT !!! Im trying to deal with it with my mind , things like what you describe , sometimes I think these doctor’s diagnosis is just bullshit and I can overcome this with my mind , there is no doubt that I’ve caused issues in my nervous system , I really think I need to do things like you describe to pull out of this nightmare! My problem is I have doubt , I’m working on that , glad I found your videos brother , thank you for your service to humanity 🙏

[@lesliesalmon6116]

Thank you. You are really helping people.

[@cfsrecovery]

Thank you so much! 😊❤️

[@heathertasker2508]

Thank you for giving me hope.

[@cfsrecovery]

You are so welcome 😊

[@renatan.5182]

Thank you !

[@cfsrecovery]

You’re welcome! 😊

[@Akemaaa]

What you said about patience here was gold!

[@cfsrecovery]

Glad it resonated!

[@mirandaandrea8215]

Amazing analogy Miguel!

[@cfsrecovery]

Glad you think so! Thank you so much ❤️😊

[@soulpowerful]

I have CFS & POTS. It’s been very difficult.

[@cfsrecovery]

Please check this link. I hope it helps! kzbin.info/www/bejne/mYmxXqeOjLqMrLcsi=GuILvaWkOsxss7Qd

[@B3l0v3d05]

But I've been in fight flight for so long...trying to do things that used to bring me joy now give me anxiety, like my brain doesn't see them as safe to "let go". And oof I'd be mad at the nurse too lol.

[@cfsrecovery]

It's completely understandable to feel that way after being in "fight-flight" mode for an extended period. Your brain is adjusting, and it takes time. Be patient with yourself. 😊❤️ And yes, sometimes a little humor helps, like being mad at the nurse! 😄👍

[@PriyaRauniyar-r9q]

Look for new things then, new kinds of music new activity n stuff

[@carolesenecal2255]

Thank you for these simple explanations. I think the pop-ups for video links are missing... ☝️😉

[@cfsrecovery]

Thanks for the heads up. Will check and add

[@Stella-kn1sl]

I wish i could sit for 10-15 Minutes. Not the symptoms are my Problem, only one specific one enrrgy/exhausting. If i would give out all the energy to sit 10 Minutes, i can cancel washroom the next Days. We often talk here about heart rate and some sort of symptoms, that is all fine, but the hardest Part with having me!/cfs are not that symptoms it is that energy leak you have, the exhausting, the fatigue that is the really Main problem, and if you have only a certain Mount of energy you cannot all give up for sitting 10 Minutes. So how to deal with that, because that is Main Problem the energy. If it would only the symptoms i could be pretty active on the couch or bed or in the house. I do not have so many symptoms and buzzing only a little but without energy there is nothing you can do no matter if you have other symptoms or Not, if battery is empty than it is empty!

[@cfsrecovery]

Thank you for sharing! 😊

[@jow7456]

Can you really heal from mecfs? I’m only 24 and my life has been turned upside down with Covid that turned into developing mecfs (8 month in) please tell me that there is hope

[@cfsrecovery]

Absolutely you can. Listen to the recovery stories in my channel brother

[@Stella-kn1sl]

I am sure you will heal because like my doctor says long covid often takes time, but it is getting better from alone. He had seen a lot of people with long covid, and they healed it only Took some time. So i am very very sure, that you can get better, really. That is only what my doctor says and his experiences from his patients. That is by the way the reason, and i only speaking here from my perspective and from my experiences, why it is such a biiiiig difference what causes that desease in the first place. So head up, you will recover i am soooooo sure really 😊 Look how many miguel had in the program with long covid, they all recover!!!!!

[@PriyaRauniyar-r9q]

Same here, keep up with good diet full of veggies n bone broth, Sunlight n vitamins d c b12.. think positive n rest a lot :)

[@MM-jn6df]

I have a question . I am currently bedbound . I tried to stand for 2 seconds , then my fatigue got worse , breathing problems etc. Should I wait to recover from that then try to stand again ?

[@Stella-kn1sl]

What about muscle shutdown? You are talking over not staying in bed all day that your symptoms came down after 10-15 minutes. That is right for buzzing,vibration ,shortness of breathe and dizziness. But what is with fatigue? What is with the muscles? Because the longer you are sitting the more they hsve to do and the more energy they are needing until they are completly shutting down. I am vety very curious,did you ever experience muscles shutting down? Not only legs, i mean also the bag. And what did you do then if you need to go peeing 2 hours later. How did you go then to the bathroom. If someone has not involved their muscles only and they have only a "deconditioning Problem" then yes sit up, because there are no consequenzes only more symptoms, only more discomfort but if your muscles are involved then i do not know if that is a good thing sitting up thst long. As i had it 5, years ago i had severe symptoms, buzzing, pain, shacky muscles, but not that i cannot use my muscles they only Was shivering and weak, and i that it was an autoimmun desease so i stayed of course calm even i had extreme symptoms while sitting, but i could sit the whole day because the only consequenzes Was pain buzzing and fatigue, no Problem. But now i am loosing Real energy and i have muscle shutdown. So i am interested miguel: as you was sitting up,how long did you do it AND more important it surely put you in an AP, and in an AP we should pull back right? So did you pull back in the AP or did you then sit up again the next day allthough you are in an AP? I am very curious in your experience 😊

[@Stella-kn1sl]

And as you was knocked out for a week how did you then go to the toilet? That is what i really wanted to know, i hope you can answer it, because it would mean a lot to me.

[@cfsrecovery]

Family members helped me 😊

[@Stella-kn1sl]

@@cfsrecovery Yeah understand, but even then your body had to do something right? Why did you Not crash Further? Because my body would do. If i am in an AP and push myself to the bathroom i would crash more and more

[@dmarie719]

I’m in a few me/CFS support groups and one called severe me/CFS. They all say aggressive rest is the only way to get better. Is that true ? Because it sounds like you’re saying to push through but for some people that’s what caused them to be severe..Pushing through that one time and now months to years in a severe state. I personally kept pushing little by little when Ive rested for so long and have only gotten worse. Help :(

[@cfsrecovery]

Please check this link. I hope it helps! kzbin.info/www/bejne/gmfGgqeEqJ6fmKssi=FwuvYjS_OgNSx7pg

[@PriyaRauniyar-r9q]

It is true, sleep 8 hours at night and allocate 2 hours a day to nap. It helps conserve energy.

[@PriyaRauniyar-r9q]

Push through when u r not sleeping/resting..

[@Stella-kn1sl]

So you say i can sit for 10-15 minutes without having that energy? Symptoms i do not care ,if they are going through the roof by trying to sit up then ok lets go. But until now not only 2 minutes Was manageable because my stomach cramps and i get exhausted,by having no energy and then the next days i am whipped out. And that allthough my mind was calm like a sea,because like i said ,there is no fear of any symptom not only one ,so it is "easy" for me sitting up in terms of symptoms but not in terms of energy. Because my Mitochondria are not producing Energy. Maybe it is like others here are saying, you had cfs but there is a difference between me snd cfs. Me means Mitochondria are not working anymore. And if you are giving out all energy your body is producing then you get minus energy and then you are severe for years. Miguel i really likr to know your thoughts on that,really i am interested in!!! People with ME also having PEM, that wipes them out for days. And on Addition you said that if we are in an adjustment period we should pull back, so: As you first sitting up in the Hospital for 2 Minutes that definitly had created PEM and wiped you out and then you need to pull back, but instead you did this 2 Minutes for everyday, right? For one or 2 weeks. So this is not pulling back and i do not know how you can do that the next day again, if you are in an AP without Energy. It is not really fitting together. I believe everything, really, but it is not fitting to your rules you gave us and it is not fitting to the experience people are making even when they have a calm mind. So like i said i really like your answers to it 😊❤

[@rachelesablone7888]

Every thing you say is good! It’s true! But it’s not ME what you talk about.

[@cfsrecovery]

I hope you find something that works for you Rachele!

[@charliegordon2266]

I agree Rachel. There is no cure for ME. Millions missing campaign proves this. If it was that easy to cure then millions wouldn't be sick. This program sounds like it is mind over matter when it has been proven that there are biological changes. When you want to sleep and can't or your heart is beating so fast. Even when I push myself to get up and try I feel like crap. I am just suppose to say hey body be better 😂😂😂 Right like haven't tried that.

[@Stella-kn1sl]

I am beginning to think that what is described here is a hypersensitive nervous system, but that it has nothing to do with ME. There is an absolute difference between not being able to move because I get symptoms and worry about them and not being able to move because I have no strength and energy. He said people are tertified to stand up because of the symptoms, i am not even able to staying up, i wish i only would be anxious about sitting up. I have nooooo energy to even try to sit up. I've also found that lying in bed for months brings back a little energy, but I don't have any just because I spend it and force myself to move even though I don't even have the strength to breathe. Interestingly, when I can't do anything and I think I'm about to die because I'm so exhausted, the symptoms stop. For me, this is a very clear sign that the body no longer even has the energy to produce the symptoms. So if you're lying in bed with severe symptoms, the body still seems to have enough energy. As I said, there's a difference between not lifting your arm because you think you'll get an electric shock and are afraid of it, and not being able to lift it because you have no energy left. I wouldn't push under any circumstances, it would be too risky for me to get to a severe stage for years. This disease is a hostage of humanity. I don't want to live like this any more, 6 months in bed is enough for me and I take my hat off to anyone who stays in bed for years. I can't stand it and I won't do it. I'm not going to suffer for 5-10 years. I do not even have the energy to breathe. And it is not, that i having a panic attack, litterly no energy for my body to breathe. That is ME. I can and i will only speaking for myself but in my thoughts i am not afraid of dying, that is so of the tablet, but of suffering for years

[@PriyaRauniyar-r9q]

Hey it’s the similar thing, follow what the videos say or not heal at all.. all these strategies work for long Covid me cfs fibro.

[@Stella-kn1sl]

@@PriyaRauniyar-r9q what if i had symptoms for years living good with them and not fearing them? If i am already not afraid of symptoms how then recover? Because not the symptoms put me in bed, it is not having energy. Not the symptoms stresses me out, it seems my trauma does because Trauma does change the brain. But it is proven that especially people with ptbs cannot create new neuropathways. So brain retraining is not working for everyone. Miguel is right, all the people here are afraid of symptoms, if they calm down the anxiety they are more regulated. I cannot regulate myself with that because i am not fearing the symptoms. So i am dysregulated of other stressors like trauma. Therapy itself puts me deeper in the illness. If i am waiting days and weeks energy is coming back but if i do a little bit physically i am immediatly dysregulated again. So these principals are good for people which fearing the symptoms to lower stress, but what about people who cannot lower their stress because the symptoms are not their problem?