Overachiever pattern, perfectionism patterns, and anxiety patterns. I relate bro. Almost everyone with CFS thinks and behaves in similar ways. Great insights nick. The book 'The Intelligent Body' by Kyle Davies is one of the best books for CFS recovery. The mindbody connection is REAL.
Yeah dude spot on. Not to say that the other stuff isn’t important as well but it’s really only the brain in our case that can make our symptoms do chronic and pervasive
@@6473n64m19 yeah. Dude btw, you are jacked. Having a giant physique is your ego talking. At the end of the day, your wellness and relaxation are more important than your workout stats. I've had to learn this the hard way.
@@deion312 yeah you’re right about the ego part for sure. I still think exercise has been overall beneficial for me throughout this journey, even with pm. But at times can be detrimental, there have been times where I have just smoked my already jacked up nervous system in the name of “gotta keep those gains, bro”. I think there’s nothing wrong in striving for a nice physique in it of itself but going about it in a way where it’s a “must” is lighting up the nervous system for sure and I haven’t quite gotten out of that yet. Thanks for the complement tho! But yes I would trade my gains to go from “functional recovery” to 100%, but I’m not so sure it works like that
Yes, same here. Looking back I’m surprised that I didn’t get CFS much sooner. It took many years of pushing, overachieving, extreme exercise, lack of sleep, stressful jobs and abusive work environment.
Hi Raelan! I just wanted to come on here and say thank you so much for the opportunity to interview with you and share my story (I said this off-camera, but it felt like I was talking to a celebrity in a way)! I see some comments are coming in and I’ll do my best to answer them in the upcoming days! Hang in there everyone and have a great day!
@Nicholas Champeau ok, was just asking because after covid I feel like it’s left me in this state of overdrive regarding my nervous system. I still struggle with weird heart rate, high blood pressure, and digestive issues. I was actually talking to Miguel the other day regarding you and this video. Would love to chat it up sometime regarding this.
@@jafetvalles4759 Same with me, it's 8 months after Covid. I also have issues with heart rate and nervous system. It becomes worse when I crash after any exertion. Before Covid I was totally healthy and regular into athletic activities. If anything works for you, please remember me and reply here. I'll be extremely thankful! My best wishes for you and everyone who is suffering from this illness. 🙏
@@lalitupadhyay9271 yup man same here I was hitting the gym up until I got covid. Pretty sure it’s just our body stuck in a negative feedback loop and a stress response. I’m about a year out now from getting covid and the issues are still there.
@@jafetvalles4759 hey btw did you get the vaccine after having Covid? In between all the crashes and recovery I never really got the chance n courage to get the vaccine in these 8 months after Covid. Now everyone is forcing me (fam n frnds), but seeing my symptoms, specially the weird heart beats I'm not sure whether and when should I take it. If you got vaccinated, how was your experience? I know one person's exp. is not enough to decide smthng but we have similar symptoms that's why I thought of asking you. Also, the cases are again increasing in India and it includes a mix of Omicron and Delta varient, so that's another reason of thinking abt it. I'm just recovering from a crash about 60-70% there today. So even if my family forces me for vaccine I'll try to delay it till next weekend so that I'm mentally more ready to cope with it, in case it suits or not... Urghhh 😭😰🙄
Dude your story needs more views... seriously helpful I love the book I’ve read it twice! You’ll be making a huge difference in a lot of people’s lives. I almost mentioned “hormesis” but kind of forgot to. I think in a nutshell I got that message out
I could very much relate to the fact I was in constant stress before I became ill. I was full of panic and very much a perfectionist type of attitude. I did NLP and to me it just caused me more stressed. I do agree that sometimes you can try too hard..Great interview!
TIMESTAMPS: 00:00 Nick’s life before ME/CFS & his gradual illness onset 11:47 Nick’s illness progression into ME/CFS 15:17 What Nick was thinking through all of this / his illness progression & things he tried for recovery 20:33 Some of the treatments Nick tried 21:35 What caused Nick’s sudden health recovery 26:58 Nick’s health relapse 29:55 What has helped Nick with his lasting recovery 39:21 What Nick wants the rest of his life to look like 41:21 Trying too hard to heal 43:30 How it feels to have his health back 47:41 Nick’s advice to himself if he could go back in time
Yeah that was a big shocker for me. That’s one that I was never able to quite shake even when my symptoms had reduced to nearly none at all. But I can also say that it does get worse with increased stress... how are you doing now?
Holy smokes. I’ve never related to anyone this much. perfect description of my mindset before I got sick. Super hard on myself. Perfectionist. Partied hard and working out hard. Seeking external validation. Never can get enough. Working hungover and being physically active. I became stressed because of bills. Made tons of reckless mistakes. I even took trazadone after college because of insomnia too etc. At 24 years old I got the same symptoms. I could barely make it through my day yet my older coworkers (30-40) would go out for drinks. Lol
@@6473n64m19 definitely feel guilty but mostly regret at times but not so much anymore. I learned to let it go when it comes up. Mostly by focusing on the long term (1-2 years). And from that perspective, I feel very chill and zen. It’s like your body pulled the plug on you in order for you to slow tf down and think differently about life.
Thanks for sharing your story Nick. Great you've found your recovery path out of this. It will be different for different folks so no need for anyone to be too offended. We all gotta look inwards and feel what rings true . Reframing the condition so it doesn't scare us is an important part of the recovery journey I think.
Yes! I’m not saying to push all the time ( in fact sometimes my level of pushing has hurt me more than it has helped) but incrementally doing a bit more helps to train your brain to not react as strongly to things in the environment. I really like the E-Book Raelan posted in the description. His story is fantastic and has a lot of parallels to mine. He goes in a bit more depth of how he got through this process of expanding activities than I did. That certainty could be a big help!
This was one of the better interviews I've listened to on this subject. Very articulate. His experience seems like a more realistic/common one than others I've heard....two steps forward, one step back. Giving ourselves a chance to recover over time and not expecting perfection is a compassionate approach and helps us to not put so much pressure on ourselves. We may always have issues with stress in our lives but knowing that we can slowly educate ourselves about what's going on psychologically is a big step forward and helps to move us into a more optimistic mindset. Dr. Schubiner says the symptoms are the last thing to go and I agree. It's a process of recovery over time and hurrying ourselves is what got us into CFS in the first place. Finding our own pace is key in my opinion.
Sarno, TMS wiki, Alan Gordon, Nicole Sachs "Journalspeak" podcast, Dan Buglio "Pain Free You" on UA-cam, Curable app and podcast, Dr Howard Schubiner. This whole mindbody space has been IMMENSLEY helpful in my recovery. I'm still working on things but I am making huge improvements and my whole life is being transformed.
this is a really interesting area and i can see links to Claire Weekes in her treatment of anxiety. i try to use this approach combined with others, but bottom line for me is calming my dysregulated nervous system from years of chronic stress and anxiety
Thanks for sharing all of these resources and congratz on making those huge improvements, sounds amazing! I personally believe that when working on these areas we not only drastically reduce getting THIS sick again but also our whole life and even that of our partner/children, as you already were pointing towards, can turn into a less stressful, more healthy and fun journey. Love and strength
In my eyes (only slight pun intended lol) I think the snow is a major clue that the nervous system is certainly overstimulated. It was one of my first major symptoms and I’ve seen videos and looked into some recovery stories from visual snow as well and a lot of people are saying that it’s due to the chronic fight or flight response
spot on. i noticed how some symptoms shifted when you told the Sarno story . I do Brain retraining and Sarno . Sticking wit it is the key in order to keep remembering that it is the amygdala not some other cause.
Thank you so much for this interview - and for your honesty, Nick. There were so many good points and things I can resonate with. It took a long time for me to find out, that anxiety is and always was a big issue for me. I don't have panic attacks or do constantly worry - but I almost always feel kind of nervous, not calm, with an over aroused nervous system. And for me, too, the mornings are terrible ("waking up in a crash"). And I also think, that researching too much, doing too much for recovery, thinking almost all the time about cfs and all it's symptoms (well, I know it's hard not to) does make recovery hardly possible.
Yes totally agreed! If you really look under the fatigue and symptoms you can really see that the nervous system is cranked to an 11. I think that discovering that you don’t have the “hardware issue” (presuming your issue isn’t causing your symptoms) and you just have the software issue, then that in it of itself can be calming. Then it’s about finding what you can do to alleviate the maladaptive stress pattern. Sometimes it’s pulling back, other times it’s proving to your brain that you are capable and strong and it doesn’t need to react to things in the environment. I find it useful to almost look at it as an injury you are trying to recover from and get back to full strength. If you were to tear a muscle, let’s say, and just rest it, sure you may make some progress but ultimately you’ll have to train it to get back to where it was. Too much training you reinjure it. Too little and you go nowhere.
@@6473n64m19 Thanks so much for your words - and I think you are totally right - it is indeed calming to know that these are ´just´ software problems and especiallly that these issues are reversible. No matter how heavy the symptoms were - people can fully recover and are totally fine. And I also think it´s all about the right balance - even though this is a tricky one to find out. By the way - you were the first one I heard talking about depersonalisation - I have to deal with this for a while and it´s really spooky. I hate that feeling. But I was kind of relieved that I´m not the only one. I wish you all the best and that you become 100% soon - or maybe even more ;-)
@@dorishangel3661 Doris thank you so much! I really tried to go in depth with what I experienced symptom wise. Not to be a downer but so that others can really relate (I’ve felt that other videos I’ve heard have lacked that). I’m looking forward on striving towards full recovery and I know you will get there too! I think the tools are there for you! Also what I would say is, with the sheer intensity of the symptoms, there is almost no way it COULDNT be a software issue. If these were hardware issues we’d probably all be dead. The more wacky, intense and varied the symptoms are, in my eyes, the more likely it is a software problem that can be trained out of
@@6473n64m19 You really made me laugh (even though it´s not funny) - but yes, I also think with these symptoms as ´hartdware issues´ you would be dead after a short while - but we are still alive -yes!!!!!!
I have got a visual snow as well! It started 4 years ago and never got away. This is my eighth ME/CFS recovering year (I know I will get better!). I was first absolutely terrified too. Now after all these years I got use to it. It can be very frustrating on bright days, especially since I love clear blue skies. Thanks for sharing your story Nick. And ofc big hugs to our amazing host. All love ❤️
I get that vision issue. At one point I nearly lost all my vision in my right eye. For me dizziness is my worst symptom and if I could just be rid of that and nothing else I’d be happy. Orthostatic intolerance out weighs my fatigue. I agree my CFS is completely from anxiety. I had a brain scan called a SPECT scan which measures the blood flow in your brain. My blood flow was permanently reduced which is what the brain does when you need to rest. For example if you just ran a marathon your brain would reduce blood flow so your body knows to rest. My doctor explained for some reason my brain is doing that as a protection mechanism. I 100% believe my CFS is related to my mental state. I’m doing somatic experiencing therapy to release trauma stored in my body and making huge adjustments to my mindset. It’s the only way out for me and I believe that fully.
Hi Melinda! I’m so sorry you are going through this! The OI symptoms are the absolute worse and can really make it impossible to feel happy at times. I can totally relate. I think resting is absolutely important too, but if you can feed your body a bit of positive stress, “forcefeed” yourself some happiness, as in thinking positively even when you don’t think you possibly can, and convince yourself your not broken, these things can be extremely helpful. I hope you check out the links too. They were really helpful for me!!! Best of luck! Feel better! You can do this
I agree cfs has mental and emotional causes. Some people get offended by that, claiming it's a physical disease only. Physical diseases have emotional causes.
Hi Raelen, hi Nick. Thanks so much for this interview. I've been working on my mind-body connection using the Curable app and Nerva, and I'm in Dan Neuffer's ANS REWIRE program. For those that hear this and think it could be damaging (obviously things like graded exercise therapy have done damage to CFS patients, we know that) I just want to say it's good to keep in mind that there's a huge difference between pushing ourselves into exercise/exertion and easing ourselves into a more active life as we recover. I think you made a huge leap in your thinking Nick, and that made you able to ease your brain/wiring into a different pattern quickly, and maybe that won't happen for everyone. I've been learning that mind-body issues are NOT "in your head" meaning that you're causing your symptoms, but instead that they are in your neural wiring and that's what needs changed and deserves to be nurtured into a new pattern. "Mantras" and positive thinking truly aren't enough if we need deeper work, because it won't override the neural patterns. (For example I have an EMDR and hypnotherapist right now to work through deeper issues. There are times where I make very little progress, and then times where it seems like huge breakthroughs are happening.) But I'm glad you shared because it helps me remember that this can be a process and I don't need to see everything get better at once for it to be a process that works, even if it takes me longer.
Wow, Raelan and Nick! Lots of take always...I have a body that is overstimulated and anxious. True. Software problem. True. I also have hardware issues and working on those for years. Have NOT started working on software. Yet. Thank you for the links. Checking now. Bless you two. A hundred times for the hope. 💕
Don’t get me wrong the hardware is important too (sleep, diet, habits, resting appropriately when necessary ) and these are the things that I’m working on to level up my recovery to 100 percent but for many people lack of acknowledging and working on the “software” problem could be holding them back
Amazing! SO happy to hear you are doing so well Nick. Thank you both so much for doing this 🙏 As soon as I saw your name Nick I wondered why I recognised it and realised it was from the comments sections on videos we must have both been watching 😂 I'm really resonating with the TMS approach too so I'm really glad to hear it's working so well for you. It was also a relief to hear that you did those programs and felt the way you did. I too have done a few including LP and have felt disappointed that I haven't got where I wanted to be but I feel reassured to hear you don't need to "succeed" at these to get better and they aren't the only way out!. Hearing you say about how much focus and trying to heal that creates makes real sense to me. Looking at the reasons why it happened in the first place too and unraveling those is such great advice. Thank you so much Nick, I hope you continue to make great leaps. 😊💕 xx
Thank you so much for the thoughtful comment! Yeah when going through some of those programs for me I almost felt this desperation that made it too stressful. For me expanding activities and knowing that I don’t have anything wrong with me on a visceral level is very important. It’s helpful for when I maybe go a bit too far and overstimulate myself too much, I’m fine and I can chill out a bit when I want to.
@@6473n64m19 Thanks for taking the time to reply Nick :-) Absolutely, I think that's the thing it's the loss of fear of symptoms and that "switch" you talk about. I think that's where there is a fine line (and where some confusion comes in for some) between pushing and doing activity in the right frame of mind with the right knowledge. I know I can tell if I'm doing something and really I shouldn't be but of course it's always tempting to do more as we so want to be just living again! So great that you are on well on your way. You have spurred me on! Big hugs xx
Hey! Boston girl here as well, I see Dr. Novak as well at Brigham, I also didn’t have pots but I have the same CSF symptoms as you following COVID and I also had a 37 percent decrease in blood flow as well. Dr Novak is extremely smart ! It’s so nice to hear you recovered , it gives me hope !
Yes I have those vision issues at times as well. I see like a thousand bright little lights swirling around plus optical migraines. It’s getting better though the further I recover
Nick was really hard on himself. He was only 24 and had all these high expectations and compared himself to his friends who were getting married and owning a house. How many 24 year olds are in that situation? He was doing fine.
No problem! I’m not saying that there aren’t other areas of recovery that are important but it makes so much sense, at least to me, when you sort of rewind and look at your life and kind of see how this whole thing developed
@@6473n64m19 Thanks for your feedback, Nick! I know that for me stress really really impacts the level of fatigue I experience at any given moment. I hav
@@bobbiev7062 If you can really internalize that you are actually okay and it’s just the brain that’s going haywire and start to slowly put your life together, I think it will give you massive confidence that you can do this, you’re not broken and you are okay. It takes consistent effort though to avoid mental pitfalls of thinking that you have some sort of terminal illness. I really recommend some of the links I’ve posted, especially Miguel’s story it paints such a clear picture and I’ve personally really benefitted from it! Best of luck! You’ve got this!
This makes sense eternal anxiety choking anxiety. And comparisons of how I use to be. Identifying all symptoms as an anxiety attack may help me - I do have a lot of fears from what happened to me.
great story and interesting insights that i can really relate to x mine is all stress related x am trying to incorporate the TMS approach with brain training, its fascinating, the mind/body link is key here i think x i had cfs for 3-4 years back in 2006 after anxiety got worse then lost my mum, tried various things but only recovered when i massively reduced stress and anxiety, was well for 10 years then chronic anxiety for 4-5 years then lost my dad and brother got cancer and cfs returned but know i recovered once so can again x thanks for sharing links x
I think the proof is in the pudding right there! You did it once and can absolutely do it again! I think where it’s easy to get stuck is finding where the stress is coming from, as sometimes it’s not obvious. For me personally, sometimes it’s fear of symptoms, sometimes it’s the “boom-bust” when I’m not in a relaxed state yet, sometimes it’s life stress in general. I think you have really good evidence here though and I think you are primed for recovery better than those who think this is 100% a physical condition... Best of luck! Keep your head up you got this!!! -Nick
@@6473n64m19 thanks Nick, sorry for late reply x weird thing today-have been in a flare for a few weeks and having to do less and less to find my baseline, been working at losing fear of symptoms and fully accepting them then today started feeling better around lunchtime and all symptoms just fell away x walked to 3 mins restaurant knowing that i could easily do it, i just feel different, hard to explain but like my body feels confident! need to really look into this stuff more 👍
@@seffie4363 exactly! I’m not saying to go out to the gym today and crush it... but I was going to ask if doing less and less was working or making the symptoms worse if you really break it down
@@seffie4363 If you think about chronic pain and symptoms as well, they are there as a danger signal. There are there to keep you safe... or so your brain thinks. People who recover are able to get there brain to no longer respond negatively to external stimuli. I’m not saying rest isn’t important, but the problem is that by “retreating” and just resting, at least in my opinion, you are showing your brain that activity is in fact dangerous and the brain will fire off stress chemicals at more and more things. If you jump in aggressively head first, you will get more symptoms. In reality you are “fine” but the symptoms may become so intense that they become traumatic in themselves and put us under even more stress... because of this, it’s easy why people can get stuck here for years or even decades. This is why it may be best to show your brain, slowly but steadily, through your thoughts and actions, that you are safe. DNRS calls it “think better than you feel” which I like. I really like to tell myself that I am completely healthy, despite the symptoms, and live my life as happily as I can ( an extreme challenge if you are flared up, I know). Ideally, in my eyes, improving kinda looks like: small amounts of activity, more confidence, less symptoms, more activity, more confidence, less symptoms... so on and so forth. It can be hard to believe, but many if not most recovery stories have this component
Thank you so much for this Raelan, what an honest and earnest interview with Nick and so glad to have found your channel. Through your channel I was able put a few pieces together that I had suspicion on but your channel has further confirmed that this and many other signals that our body sends are related to our fight or flight response being constantly activated by our nervous system and that your body needs to be in the rest and digest mode in order to heal. There is more than one way to achieve this and that is why you have many different modalities of healing and everyone’s mind and body is different which also accounts for the different approaches that worked for different people. I have realised that brain retraining helps in getting ourselves back into life but I also agree that one can try too hard to get better. Brain retraining programs can itself become stressful if you put too much pressure on yourself. I have one question for Nick since he mentioned The Lightening Process and DNRS. I am assuming, he may have tried both. Which one of them did he find more useful? There are common factors in both of them which is interrupting your mental loops but the LP follows a shorter process with more frequency and the DNRS follows a longer process of interruption with less frequency. I would like to know his opinion on which one he finds more useful if he can. Thank you so much for this great interview.
Hi NA! Yeah it totally is the chronic, runaway stress response that ravages is for sure. Underneath the fatigue and other symptoms, if you pay close attention you can feel the overstimulation. For me at the moment I use little snippets of both but I don’t really use them in a direct effort to attempt to get rid of my symptoms. So sometimes before bed I’ll picture myself feeling really well and calm the next day. I’ll picture how I want my day to go and how I want to feel, then kind of use the “stops” and maybe a brief visualization if there is a moment where I feel over the top symptoms, although I know that at least for me right now, it’s probably not going to stop them in their tracks. The key thing is to learn how to be more calm so that your brain doesn’t over react to stuff anymore, I think everyone is different in how they end up getting there. You might really like the Miguel Batista link I put in there called “How I recovered from CFS/Fibro/Pots”. That kid was extremely severe and got all the way better. I hope this helps! -Nick
nick champeau thank you so much for replying. I totally get you and yes any regimen which doesn’t resonate with you completely is bound to bring you stress. I find that visualisations can be done on their own as well for however long you want it to be. Their idea of using stop before it is to wire the stop with feeling calm so with practice in future when you say stop you should feel calm and stop your negative loops in its tracks. I don’t use the stops, l have developed my own language that resonates with me more and I like the visualisations part because it gets me out of thinking about me in the current condition. I really appreciate your tip on staying calm for overall healing. I have watched Miguel’s videos thanks for that. I love that he explains things visually. It sticks. Thank you
Same for me doing the Lightning Process. It worked so well so quickly I became anxious doing it more and more as I was sooo desperate to get better. That being said I know of people who have had tremendous results. Different strokes for different folks I guess
I’m sure I’m spacing here but I can’t find the links😬 Thank you for taking the time to put those together Nick! Wishing you the best as you move towards all of your goals.
Thank you for this interview! It is such as interesting perspective. For me personally, I think anxiety was part of the cause and is a contributing factor to my CFS, although I believe there are also other factors. That said, I am very open to this way of healing since the body and brain are SO connected! I thought this interview was very well delivered and Nick spoke really respectfully, especially considering this viewpoint could be a bit controversial. Thanks again to you both😊
Yeah so I think there are other factors as well that cause the maladaptive stress response, for sure. For me personally, it was the stress on my body from partying, not sleeping great, using stims all the time on top of the perfectionism, low self esteem and anxiety about my situation. If I had not treated my body that way, maybe I avoid cfs (though the other things make life not great, and quite honestly I feel like the physical abuse stemmed from my mental tendencies). When I say anxiety, I’m really referring to the “ramping up” of the nervous system. If you are well past your stress threshold then virtually anything can give you symptoms or you may have symptoms all the time. Taking care of yourself, diet, sleep, relaxation I believe are very very important but so is training your brain out of its extreme reaction to external stimuli (anxiety) at this point it’s not “all in the head” rather it becomes learned. So expanding a bit inspite of symptoms can be a help. You just don’t want to push too hard through brutal symptoms or symptoms that are becoming worse and worse, although small flares after activity almost seem like a necessary part of improvement, at least for me. I hope this helps! Thanks!
Yes, morning is the worst. I have to roll on top of the corners and edges of my bed in various angles to push out the tension and pain for a good couple hours before getting out of bed. And I have to often throughout the day, depending on the week/month massage my body like this against furniture to manage the pain
This particular symptom diminishes and goes away as I get my stress under control and believe that I am truly healthy and safe despite the symptoms that my brain is causing me. The morning symptoms in my view are a protection mechanism, because in essence that is what pain and symptoms are “oh that hurts, don’t do that”. You’re brain is giving you symptoms, in my opinion, because it’s afraid you are about to do something that will damage it. I would check out the “6 ways to create safety in the nervous system” video that is linked in the description as well as this link that I will post at the bottom of this comment. It’s a story about a kid who embraced the TMS model and made a full recovery from housebound and 24/7 symptoms and now lives an active and rewarding life. It’s an archive of a blog and therefore the spacing of the font is kind of messed up but I really hope you enjoy the story and find it motivating. Best of luck in your recovery! -Nick web.archive.org/web/20191125205503/www.ryanwhoop.com/2019/05/09/im-back/
Thanks for the great interview, Nick! I also owe a debt of gratitude to Sarno/Shubiner and the TMS method. I’m not sure where to find the Miguel Bautista link on stress thresholds that you mentioned, can you please advise? It sounds very interesting.
Whenever I stray away from it and look for more medical reasons and alternative reasons for why I may feel the way I do, the more I fall back. His work and similar things are absolutely the key
This interview makes me think of Dr. Robert Naviaux's work about cell danger response! Thanks for the information, I always learn something with each interview.
Hi Veronique! I don’t either. But I know that for me personally what is going on upstairs played a significant role in keeping me stuck. I think we can all agree that an over stressed body (which the mind is part of that, the two can’t be separated) is what perpetuates chronic illness and CFS. In particular. For me, coming to the realization that my brain and my thoughts played a massive role in getting me sick and keeping me stuck let go of enough stress to feel a reduction in symptoms to the point that I could do more activity without crashing. Also note that I’m not completely recovered, as I stated towards the end. I believe that implementing more sound habits such as consistently getting quality sleep, laying off stimulants in addition to challenging my symptoms at levels that are appropriate will get me all the way there. For the time being, I essentially function like a normal person, just with more symptoms. I’m probably much more active physically than an average person, to be honest. And for me that’s good progress. If you’re open to it, check out some of the links in the description. I’ve spent a lot of time putting theme together and there is several hours of content there. I hope you find them helpful. Best of luck on your journey. Feel better! You can do this! -Nick
Hey. Thanks for sharing your story Nick and thank you as always Realan for doing your work. Nick. I was wondering at what stage your eye snow/floaters went away and did they just vanish one day of was it a slow process?
So on a moment to moment basis it’s definitely not the thoughts in my head that are causing my symptoms right then and there, for sure. Throughout this time I have had “calm positive thoughts” while being symptomatic and I have also been “anxious as fuck” (lol) and have not had typical cfs symptoms in that moment. It’s sort of the perpetual stressed state keeping it going, at least in my opinion, and cutting off that fear/ anxiety is the key. Ofcourse, being abusive to my body in a multitude of ways wasn’t useful, and maybe I would have avoided this shit show if I hadn’t done that, but it’s also true that a lot of people abuse the crap out of their bodies in a similar way and don’t get cfs. The mental/ emotional aspects are the difference
12:30 I have visual snow syndrome (and all the symptoms that go with it : eye floaters, afterimages, sensitivity to light, dizziness, migraines, blind spots... did you get rid of vss???
No unfortunately. I feel as if it may be one of the last symptoms to go as even in the “peak” of my recovery (lots of activity and almost no symptoms at all, I still had it), it’s definitely possible to cure but I feel as if you have to have been regulated for some time for the visual symptoms to entirely dissipate, although the dizziness and migraines in my experience do leave before the visual stuff which is good news. And at a certain point when you are just feeling good overall the vss just doesn’t bother you.
So I wouldn’t be passing out per se, I hope I never came across as me literally passing out, but I had the “feeling of passing out” there is a big distinction there. In fact, one of my awakenings came from an event that I felt the most like I was going to pass out, but yet my, BP was high! And in that state there was no way I was going to pass out.
I would guess the visual snow is related to the "tacky"/pots thing and it's just particularly pronounced with you. I'll get that too occasionally when the symptom is "fun" as I'll kinda leave this dimension a bit
I’ve also heard of people who have it perpetually and not as of a result of pots. I also first got it before I experienced any orthostatic symptoms. There’s a particular part of the brain that is responsible for vision, I used to know the name of it but I forgot, and apparently in this study that part of the brain is lit up like a Christmas tree in MRIs. Simply put, this part of the brain is overactive and I have heard people recovering from this particular symptom as well when there stress levels have been lowered for some time, although I haven’t quite reached that level yet. I hope that helps
@@juntjoonunya9216 it can worsen with a flare but generally speaking there was no correlation. Although I can say I have absolutely had dizziness on standing for long stretches of time and this does go away entirely when stress is reduced. Stress comes in many forms obviously but the most prominent in my experience are the fear and trauma that the symptoms themselves put on me. A huge step to overcoming this is understanding that it is the brain that is doing this and that you are not broken or damaged. Genuine belief that you are fine can literally shut down the signals that are causing the stress hormones to be released in the first place. It may not be an overnight process but with belief, persistence and courage it can happen
hello dear ones, i'm always so confused. to me such stories sound like mine and I apparently have no cfs but adrenal fatigue / hpa axis dysfunction ...?!? ... (I have no swollen lymph nodes and immune system signs but severe other symptoms such as blood sugar fluctuations, blood pressure fluctuations, can no more walking, only reading for a short time in the morning (then the rest of the day not because my brain can't function anymore), sometimes can't even unlock the smartphone because it feels like my brain is going to switch off at any moment, drowsiness and much more much more). is adrenal fatigue at the last stage the same as CFS after all? Many greetings from Germany. Unfortunately, none of the doctors here are familiar with the whole subject
I think I can help here. In my “expert” opinion, it’s all the same shit. It doesn’t matter what the label is, it’s simply a result of the nervous system being in overdrive. I seriously recommend the links Raelan put in the description. They have helped me to understand that I am actually safe and okay and it’s just the brain that is causing these chronic symptoms because it thinks it’s keeping me safe. Internalizing this has helped me tremendously. I’m going to link a separate article at the end of this comment. It’s an archived blog so this spacing is strange, but read it fully and I think it may be the thing that gets you on the right path. Best of luck, you got this! -Nick web.archive.org/web/20191125205503/www.ryanwhoop.com/2019/05/09/im-back/
@@6473n64m19 thank you dear nick! I also get the feeling that everything (AF, CFS, OT) is essentially the same with different characteristics and, for example, the immune system-specific symptoms may only be related to how you got into the disease - if you get cfs through a virus then there are these symptoms. if over stress, then not. perhaps. I'll look at the links in a moment. thank you very much and all the best to you!
Heyyy @Nicholas Champeau, in the last 1.5 years with regard to a few individual problems - yes a little. But some other problems are worse than at the beginning, for example the massive restrictions on concentration. have had a new supplement for a few days. very simple but it seems to help me a little. this is a sugar that supplies the body with energy independently of insulin. The sugar is called galactose. not cheap but I'll keep testing it. i hope so much that the body reach homeostasis again at some point. I finally want to have a normal life again… walking and watching TV and reading and working or whatever 🥺🥵🤞 are you also struggeling with this illness or these kinds of illnesses?
I get the heavy head feeling. It’s my most prevalent symptom of the fatigue. I was diagnosed with pots but I didn’t have that test for the blood flow, but I think I have the same issue. On the tilt table my hr went over 30 bpm idk if I really have pots or if it’s all cfs. I also take mestinon and Midodrine right now! And they don’t help at all!! I took florinef first. No relief from any. I’ve been to naturopaths and integrated doctors all a waste of $$. How do we lose the fear? I keep trying - I think it’s the root. I do trauma therapy... I can’t figure it out. I’ve also had anxiety/ panic disorder for over ten years. I am mostly housebound because I’m fatigued non stop, taking medical leave from work. Can’t walk or drive. Did you get sick in the car when driving from the pots symptoms ?
Also I wanted to ask. Because I was bedbound after a stressful event literally 10 years ago. And paxil brought me out of it. Never thought I’d get this sick again I kinda went into remission for years. I feel this is an anxiety / stress disease. I also have high levels of ebv but I think it’s high cause the non stop stress. Do you take any antidepressants now for the anxiety?
Also. Sorry been writing these as I watch the video 😂 I think what may help you get to your 100% is Joe Dispenza- breaking the habit of being yourself book. He has a few good books. He also has a ton of great UA-cam videos. And a course you can take
@@stephg4273 Hi Stephanie. The pots/ OI stuff is the absolute worst and I’m sorry you are going through that. It’s something I wouldn’t wish on my worse enemy. If I was in a particularly severe crash then yes. Last summer after a stint of working very hard and, again, being old anxious me, I had a really nasty crash and I was moving out of my apartment and I felt like I could barely make it home. So yes when it was severe. Standing in stores even got pretty torturous for me as well. In regards to the anti depressant, I think the fact that Paxil got you out of bed really goes to show that it is the stress response keeping you stuck and, just going out on a limb here, not a medical professional lol, the ebv stuff would be taken care of. I currently do not take an anti depressant though I do take a low dose beta blocker that can be mildly helpful at times. Maybe it would be helpful to find out where the stress is coming from? Are you eating poorly, staying up late? Maybe you constantly think of what you should be doing and how you feel like you are missing out on life (big one for me). Or maybe it’s the symptoms themselves that are traumatic and keeping you in this never ending loop. I’m not saying to push your way out, I think that can be a bad idea but what I can say is that what got myself out of some of my most challenging times is doing just a bit more than I thought I could and then thinking “damn I just did that, maybe I’m healthy” I like to think about this at times almost like an injury. Given that other variables to reduce stress on your body are accounted for, let’s say you were to tear a muscle. Sure you need to let it heal, but if you want a strong bicep again. You need to train it. And it may yell at you after training, and it may feel like shit for a bit, but that’s okay, because it’s getting stronger. What you don’t want to do is go so hard that your tendons snap and you have to start all over. Also, challenging yourself a bit builds your belief, which can be huge. I hope that helps! -Nick
I didn’t measure it. However at my worse it did race and I experienced orthostatic intolerance symptoms to the point that i feared standing up at all at my worse. Standing in stores and going for walks was a nightmare for me. Lowering my stress and realizing the issue was my brain and it’s stress response on the body reduced and got rid of this symptom in its entirety
@@6473n64m19 man this is encouraging for me. This is my big one... my stress response to standing is so bad I get shortness of breath like a full panic attack. Would love to see more from you!
@@FreshAgenda thanks for the comment! Yeah I think I’ll be back at some point, perhaps with my own channel talking about my own takes on cfs and recovery from it. I want to be 100% first. I did slide back from this interview, but nonetheless I’m running 3-4 days a week for 3 miles (did it today, even with a hangover! Lmao), lifting 3-4 days a week, playing some golf, stuff like that. I’m very symptomatic at times and it’s still typical of me to have 24/7 symptoms and “crashes” as we like to call it, but ultimately full recovery will be dependent on what I do, because I’ve learnt that recovery isn’t something that happens to you but rather, something you take action and do. So, given I take those actions you should hear from me sooner than later
@@6473n64m19 you commented to another person on here that when you strayed away from the TMS basis you tended to decline. I find this is the same for me. Steve Ozanich has been helpful in seeing more into that. That being said, I feel like all the "type T" traits have been compounding my entire life. I check all the boxes. It is becoming more and more clear to me that the way I interact with my life and trying to control every single aspect of it, including other people which is not possible, finally caught up to me and I became stuck in fight or flight. As you know symptoms create the fear loop that feeds them. Constantly resisting the symptoms seems to be a factor in being stuck.
Hi Raelan love your channel but I wish you'd make these recovery videos shorter. Having me/cfs I find it very difficult to watch a 50 minute UA-cam video
I appreciate that, Paul. Totally understandable! It's challenging to do, and many people tell me that they love hearing the longer interviews. My compromise is adding the timestamps so that people can just watch the parts they want to 😊
31:00 so said that he believes that CFS is a result of anxiety. Orthostatic intolerance and mast cell activation don't develop because of anxiety. Let's please not mix up psychological stuff with ME again! It's so frustrating. That he was able to exercise extensively after reading that article could be explained by a dopamine surge. People with ME lack dopamine and other neurotransmitters. Which causes and intensifies PEM. Also, he's not recovered. And this story will do harm to a lot of people. I was this person who tried exercising like crazy and made myself sick every time, a got worse through the years.
Hi Forisma! Thanks for taking the time to write the comment, I appreciate your viewpoint. In the time stamp that you were referencing, I had been experiencing orthostatic intolerance symptoms (heavy legs and body, brain fog, dizziness, light headedness and, at times when it was severe, temporary vision loss) for about 6 months at that point. In my experience, OI for me had been a key symptom that I would experience when my, shall I say “organism” (mind, body, emotional state) were highly highly stressed. When I had the sort of “ah-ha” moment, I believed what had happened is that the thought I had took enough stress off me that I had a reduction in symptoms and was able to exercise with some quality intensity. Additionally, it’s important to note that this reduction in symptoms and ability to exercise stayed with me for months after this moment and I felt good enough where I often had symptom-free days despite my increase in activity levels. Unfortunately, when I went back to work the following fall I did experience some more symptoms as I became more stressed, but I still was able to exercise often spending an hour or more at the gym exercising. So for me, realizing that the brain was behind many of my chronic symptoms was key to reducing stress and therefore, getting rid of OI. Now about my advice... when it comes to the setbacks I’ve had, I can see that other factors have played a role such as lacking quality sleep, using drugs or alcohol (unfortunately) to push through symptoms or simply out of bad habits I’ve created and fears around work, etc. Maybe I was perhaps too blunt in my interview but I do think challenging symptoms in order to reduce fear of them and program your brain to not react in that way is important. For example when I was very crashed out after a set back this past fall, what brought me back to a baseline of, what I would call “mild cfs” was challenging myself periodically and proving to myself that I’m not broken. I used movement and exercise in small increments to do that... Am I all the way there? No. But I still think my story is worth sharing and I think I’m going on a positive trajectory and not a negative one. Perhaps I didn’t illustrate it well but there were several points where things were looking very dire for me... But now I’m playing golf, going to the gym 5 days per week. The other day I banged out 90 push ups in a row and the day before the interview I ran a 5k on the treadmill, which is solid progress. Getting all the positive habits in place (and yes, not pushing ALL the time, which I’ll admit is a mistake and I’m sorry if I made it seem like this was a solution) will lead to me getting all the way there. If you are open to some different approaches that may make a difference in your recovery, definitely check out some of the links in the description, I spent a lot of time putting those together... Best of luck on your health and healing journey!!! -Nick
@@6473n64m19 as far as I can see, your link collection is an "all in your head" mentality mantra. I've been around with this ME thing for a while, so I've seen it all. Honestly, there's nothing new in that approach for me. I've tried this approach myself. It might work for some people. As I said, increasing neurotransmitters like dopamine due to positive self talk and possibly in combination with exercise and mindfulness, is enough for some people to substantially recover (I think, mostly men, because of the hormonal differences). For me, I don't have much stress and I live like a monk. I eat like a monk, I meditate like a monk, I certainly avoid stress on my system and I don't drink alcohol of caffeine because you know, it makes me sick. I go to the gym within my limits. I'm thankful I still can do it. Mild exercise. Whenever I have energy after all this, and my work, and working out, I try to enjoy my life and meet up with friends. I seem to slowly progress. But it's not due to the "all in your head" mantra. I read scientific stuff. I take supplements which have been shown to help with the puzzle pieces of ME like MCAS (food intolerances you were talking about is MCAS). Maybe I'll be able to recover some day. But this video, unfortunately it will be harmful for a lot of folks like me, who will take this advise to the heart. This approach made me worse in the past. I burned out. And it took me ages to recover. I know a lot of people will not like my comments. But I'm sick of the positivity mantra, as it can simply be harmful. Not everyone will have an equal neurotransmitters surge due to positivity mantras and will crash like hell. This is why I'm trying to be vocal (depending on my energy) in the hope that it will help someone out there.
Overachiever pattern, perfectionism patterns, and anxiety patterns. I relate bro. Almost everyone with CFS thinks and behaves in similar ways. Great insights nick. The book 'The Intelligent Body' by Kyle Davies is one of the best books for CFS recovery. The mindbody connection is REAL.
DWM, was thinking about getting that book. Sounds spot on.
Yeah dude spot on. Not to say that the other stuff isn’t important as well but it’s really only the brain in our case that can make our symptoms do chronic and pervasive
@@6473n64m19 yeah. Dude btw, you are jacked. Having a giant physique is your ego talking. At the end of the day, your wellness and relaxation are more important than your workout stats. I've had to learn this the hard way.
@@deion312 yeah you’re right about the ego part for sure. I still think exercise has been overall beneficial for me throughout this journey, even with pm. But at times can be detrimental, there have been times where I have just smoked my already jacked up nervous system in the name of “gotta keep those gains, bro”. I think there’s nothing wrong in striving for a nice physique in it of itself but going about it in a way where it’s a “must” is lighting up the nervous system for sure and I haven’t quite gotten out of that yet.
Thanks for the complement tho! But yes I would trade my gains to go from “functional recovery” to 100%, but I’m not so sure it works like that
Yes, same here. Looking back I’m surprised that I didn’t get CFS much sooner. It took many years of pushing, overachieving, extreme exercise, lack of sleep, stressful jobs and abusive work environment.
Hi Raelan! I just wanted to come on here and say thank you so much for the opportunity to interview with you and share my story (I said this off-camera, but it felt like I was talking to a celebrity in a way)! I see some comments are coming in and I’ll do my best to answer them in the upcoming days! Hang in there everyone and have a great day!
Im not sure if I understood the part where you mentioned viruses. Can viruses basically put us in the same state of nervous system overdrive?
@Nicholas Champeau ok, was just asking because after covid I feel like it’s left me in this state of overdrive regarding my nervous system. I still struggle with weird heart rate, high blood pressure, and digestive issues. I was actually talking to Miguel the other day regarding you and this video. Would love to chat it up sometime regarding this.
@@jafetvalles4759 Same with me, it's 8 months after Covid. I also have issues with heart rate and nervous system. It becomes worse when I crash after any exertion. Before Covid I was totally healthy and regular into athletic activities.
If anything works for you, please remember me and reply here. I'll be extremely thankful! My best wishes for you and everyone who is suffering from this illness. 🙏
@@lalitupadhyay9271 yup man same here I was hitting the gym up until I got covid. Pretty sure it’s just our body stuck in a negative feedback loop and a stress response. I’m about a year out now from getting covid and the issues are still there.
@@jafetvalles4759 hey btw did you get the vaccine after having Covid? In between all the crashes and recovery I never really got the chance n courage to get the vaccine in these 8 months after Covid.
Now everyone is forcing me (fam n frnds), but seeing my symptoms, specially the weird heart beats I'm not sure whether and when should I take it.
If you got vaccinated, how was your experience? I know one person's exp. is not enough to decide smthng but we have similar symptoms that's why I thought of asking you.
Also, the cases are again increasing in India and it includes a mix of Omicron and Delta varient, so that's another reason of thinking abt it.
I'm just recovering from a crash about 60-70% there today. So even if my family forces me for vaccine I'll try to delay it till next weekend so that I'm mentally more ready to cope with it, in case it suits or not... Urghhh 😭😰🙄
Thank you Raelan and Nick for the shout out and link in the description. I hope my recovery story helps others.
Dude your story needs more views... seriously helpful I love the book I’ve read it twice! You’ll be making a huge difference in a lot of people’s lives. I almost mentioned “hormesis” but kind of forgot to. I think in a nutshell I got that message out
I could very much relate to the fact I was in constant stress before I became ill. I was full of panic and very much a perfectionist type of attitude. I did NLP and to me it just caused me more stressed. I do agree that sometimes you can try too hard..Great interview!
Thanks Kathy! This thing is a f***ing beast for sure but we can all get there!
TIMESTAMPS:
00:00 Nick’s life before ME/CFS & his gradual illness onset
11:47 Nick’s illness progression into ME/CFS
15:17 What Nick was thinking through all of this / his illness progression & things he tried for recovery
20:33 Some of the treatments Nick tried
21:35 What caused Nick’s sudden health recovery
26:58 Nick’s health relapse
29:55 What has helped Nick with his lasting recovery
39:21 What Nick wants the rest of his life to look like
41:21 Trying too hard to heal
43:30 How it feels to have his health back
47:41 Nick’s advice to himself if he could go back in time
Amazing video, do you have any contact with Nick? I'd love to hear how he's doing
I always have visual snow!! Especially when I look at the sky. Great interview. Thank you so much Nick. Very proud of you!
Yeah that was a big shocker for me. That’s one that I was never able to quite shake even when my symptoms had reduced to nearly none at all. But I can also say that it does get worse with increased stress... how are you doing now?
Holy smokes. I’ve never related to anyone this much. perfect description of my mindset before I got sick. Super hard on myself. Perfectionist. Partied hard and working out hard. Seeking external validation. Never can get enough. Working hungover and being physically active. I became stressed because of bills. Made tons of reckless mistakes. I even took trazadone after college because of insomnia too etc.
At 24 years old I got the same symptoms. I could barely make it through my day yet my older coworkers (30-40) would go out for drinks. Lol
Yeah when I think of the way I’ve gone about everything I kind of start to feel guilty... it’s something I’m working on. How are you doing?
@@6473n64m19 definitely feel guilty but mostly regret at times but not so much anymore. I learned to let it go when it comes up. Mostly by focusing on the long term (1-2 years). And from that perspective, I feel very chill and zen. It’s like your body pulled the plug on you in order for you to slow tf down and think differently about life.
@@07torresa yeah I agree
Thanks for sharing your story Nick. Great you've found your recovery path out of this. It will be different for different folks so no need for anyone to be too offended. We all gotta look inwards and feel what rings true . Reframing the condition so it doesn't scare us is an important part of the recovery journey I think.
Yes! I’m not saying to push all the time ( in fact sometimes my level of pushing has hurt me more than it has helped) but incrementally doing a bit more helps to train your brain to not react as strongly to things in the environment. I really like the E-Book Raelan posted in the description. His story is fantastic and has a lot of parallels to mine. He goes in a bit more depth of how he got through this process of expanding activities than I did. That certainty could be a big help!
Well said, Maureen! Thanks for this ❤️
This was one of the better interviews I've listened to on this subject. Very articulate. His experience seems like a more realistic/common one than others I've heard....two steps forward, one step back. Giving ourselves a chance to recover over time and not expecting perfection is a compassionate approach and helps us to not put so much pressure on ourselves. We may always have issues with stress in our lives but knowing that we can slowly educate ourselves about what's going on psychologically is a big step forward and helps to move us into a more optimistic mindset. Dr. Schubiner says the symptoms are the last thing to go and I agree. It's a process of recovery over time and hurrying ourselves is what got us into CFS in the first place. Finding our own pace is key in my opinion.
Sarno, TMS wiki, Alan Gordon, Nicole Sachs "Journalspeak" podcast, Dan Buglio "Pain Free You" on UA-cam, Curable app and podcast, Dr Howard Schubiner.
This whole mindbody space has been IMMENSLEY helpful in my recovery. I'm still working on things but I am making huge improvements and my whole life is being transformed.
This was the most important step in my transformation to wellbeing too
this is a really interesting area and i can see links to Claire Weekes in her treatment of anxiety. i try to use this approach combined with others, but bottom line for me is calming my dysregulated nervous system from years of chronic stress and anxiety
Thanks for sharing all of these resources and congratz on making those huge improvements, sounds amazing! I personally believe that when working on these areas we not only drastically reduce getting THIS sick again but also our whole life and even that of our partner/children, as you already were pointing towards, can turn into a less stressful, more healthy and fun journey.
Love and strength
Yes to the visual snow! When my fatigue is bad, my eyes can’t hold a focus and I get this “snow” when I stand too long or my blood pressure gets low.
In my eyes (only slight pun intended lol) I think the snow is a major clue that the nervous system is certainly overstimulated. It was one of my first major symptoms and I’ve seen videos and looked into some recovery stories from visual snow as well and a lot of people are saying that it’s due to the chronic fight or flight response
spot on. i noticed how some symptoms shifted when you told the Sarno story . I do Brain retraining and Sarno . Sticking wit it is the key in order to keep remembering that it is the amygdala not some other cause.
Omg! Thank you for talking about the visual snow!!! I thought I am going blind and insane !
Lol you are not going insane at all it’s part of the stress response
Thank you so much for this interview - and for your honesty, Nick. There were so many good points and things I can resonate with. It took a long time for me to find out, that anxiety is and always was a big issue for me. I don't have panic attacks or do constantly worry - but I almost always feel kind of nervous, not calm, with an over aroused nervous system. And for me, too, the mornings are terrible ("waking up in a crash").
And I also think, that researching too much, doing too much for recovery, thinking almost all the time about cfs and all it's symptoms (well, I know it's hard not to) does make recovery hardly possible.
Thanks for sharing, Doris ❤️
Yes totally agreed! If you really look under the fatigue and symptoms you can really see that the nervous system is cranked to an 11. I think that discovering that you don’t have the “hardware issue” (presuming your issue isn’t causing your symptoms) and you just have the software issue, then that in it of itself can be calming. Then it’s about finding what you can do to alleviate the maladaptive stress pattern. Sometimes it’s pulling back, other times it’s proving to your brain that you are capable and strong and it doesn’t need to react to things in the environment. I find it useful to almost look at it as an injury you are trying to recover from and get back to full strength. If you were to tear a muscle, let’s say, and just rest it, sure you may make some progress but ultimately you’ll have to train it to get back to where it was. Too much training you reinjure it. Too little and you go nowhere.
@@6473n64m19 Thanks so much for your words - and I think you are totally right - it is indeed calming to know that these are ´just´ software problems and especiallly that these issues are reversible. No matter how heavy the symptoms were - people can fully recover and are totally fine. And I also think it´s all about the right balance - even though this is a tricky one to find out.
By the way - you were the first one I heard talking about depersonalisation - I have to deal with this for a while and it´s really spooky. I hate that feeling. But I was kind of relieved that I´m not the only one.
I wish you all the best and that you become 100% soon - or maybe even more ;-)
@@dorishangel3661 Doris thank you so much! I really tried to go in depth with what I experienced symptom wise. Not to be a downer but so that others can really relate (I’ve felt that other videos I’ve heard have lacked that). I’m looking forward on striving towards full recovery and I know you will get there too! I think the tools are there for you!
Also what I would say is, with the sheer intensity of the symptoms, there is almost no way it COULDNT be a software issue. If these were hardware issues we’d probably all be dead. The more wacky, intense and varied the symptoms are, in my eyes, the more likely it is a software problem that can be trained out of
@@6473n64m19 You really made me laugh (even though it´s not funny) - but yes, I also think with these symptoms as ´hartdware issues´ you would be dead after a short while - but we are still alive -yes!!!!!!
I have got a visual snow as well! It started 4 years ago and never got away. This is my eighth ME/CFS recovering year (I know I will get better!). I was first absolutely terrified too. Now after all these years I got use to it. It can be very frustrating on bright days, especially since I love clear blue skies.
Thanks for sharing your story Nick. And ofc big hugs to our amazing host. All love ❤️
Great interview! Thanks for sharing
Glad you enjoyed it Dianne! ❤️
This resonates for me - severe fear & anxiety.
I get that vision issue. At one point I nearly lost all my vision in my right eye. For me dizziness is my worst symptom and if I could just be rid of that and nothing else I’d be happy. Orthostatic intolerance out weighs my fatigue. I agree my CFS is completely from anxiety. I had a brain scan called a SPECT scan which measures the blood flow in your brain. My blood flow was permanently reduced which is what the brain does when you need to rest. For example if you just ran a marathon your brain would reduce blood flow so your body knows to rest. My doctor explained for some reason my brain is doing that as a protection mechanism. I 100% believe my CFS is related to my mental state. I’m doing somatic experiencing therapy to release trauma stored in my body and making huge adjustments to my mindset. It’s the only way out for me and I believe that fully.
Hi Melinda! I’m so sorry you are going through this! The OI symptoms are the absolute worse and can really make it impossible to feel happy at times. I can totally relate. I think resting is absolutely important too, but if you can feed your body a bit of positive stress, “forcefeed” yourself some happiness, as in thinking positively even when you don’t think you possibly can, and convince yourself your not broken, these things can be extremely helpful. I hope you check out the links too. They were really helpful for me!!!
Best of luck! Feel better! You can do this
Thanks so much for sharing this, Melinda ❤️
I agree cfs has mental and emotional causes. Some people get offended by that, claiming it's a physical disease only. Physical diseases have emotional causes.
Hi Raelen, hi Nick. Thanks so much for this interview. I've been working on my mind-body connection using the Curable app and Nerva, and I'm in Dan Neuffer's ANS REWIRE program. For those that hear this and think it could be damaging (obviously things like graded exercise therapy have done damage to CFS patients, we know that) I just want to say it's good to keep in mind that there's a huge difference between pushing ourselves into exercise/exertion and easing ourselves into a more active life as we recover. I think you made a huge leap in your thinking Nick, and that made you able to ease your brain/wiring into a different pattern quickly, and maybe that won't happen for everyone. I've been learning that mind-body issues are NOT "in your head" meaning that you're causing your symptoms, but instead that they are in your neural wiring and that's what needs changed and deserves to be nurtured into a new pattern. "Mantras" and positive thinking truly aren't enough if we need deeper work, because it won't override the neural patterns. (For example I have an EMDR and hypnotherapist right now to work through deeper issues. There are times where I make very little progress, and then times where it seems like huge breakthroughs are happening.) But I'm glad you shared because it helps me remember that this can be a process and I don't need to see everything get better at once for it to be a process that works, even if it takes me longer.
Wow, Raelan and Nick! Lots of take always...I have a body that is overstimulated and anxious. True. Software problem. True. I also have hardware issues and working on those for years. Have NOT started working on software. Yet. Thank you for the links. Checking now. Bless you two. A hundred times for the hope. 💕
Don’t get me wrong the hardware is important too (sleep, diet, habits, resting appropriately when necessary ) and these are the things that I’m working on to level up my recovery to 100 percent but for many people lack of acknowledging and working on the “software” problem could be holding them back
Thanks for sharing, Sandra ❤️
Amazing! SO happy to hear you are doing so well Nick. Thank you both so much for doing this 🙏 As soon as I saw your name Nick I wondered why I recognised it and realised it was from the comments sections on videos we must have both been watching 😂 I'm really resonating with the TMS approach too so I'm really glad to hear it's working so well for you. It was also a relief to hear that you did those programs and felt the way you did. I too have done a few including LP and have felt disappointed that I haven't got where I wanted to be but I feel reassured to hear you don't need to "succeed" at these to get better and they aren't the only way out!. Hearing you say about how much focus and trying to heal that creates makes real sense to me. Looking at the reasons why it happened in the first place too and unraveling those is such great advice. Thank you so much Nick, I hope you continue to make great leaps. 😊💕 xx
Thank you so much for the thoughtful comment! Yeah when going through some of those programs for me I almost felt this desperation that made it too stressful. For me expanding activities and knowing that I don’t have anything wrong with me on a visceral level is very important. It’s helpful for when I maybe go a bit too far and overstimulate myself too much, I’m fine and I can chill out a bit when I want to.
@@6473n64m19 Thanks for taking the time to reply Nick :-) Absolutely, I think that's the thing it's the loss of fear of symptoms and that "switch" you talk about. I think that's where there is a fine line (and where some confusion comes in for some) between pushing and doing activity in the right frame of mind with the right knowledge. I know I can tell if I'm doing something and really I shouldn't be but of course it's always tempting to do more as we so want to be just living again! So great that you are on well on your way. You have spurred me on! Big hugs xx
Hey! Boston girl here as well, I see Dr. Novak as well at Brigham, I also didn’t have pots but I have the same CSF symptoms as you following COVID and I also had a 37 percent decrease in blood flow as well. Dr Novak is extremely smart ! It’s so nice to hear you recovered , it gives me hope !
I don’t think Novak will solve your problems but maybe if he prescribes beta blockers and you do the right work you may be doing better! Let me know!
Wauw! Amazing! Congrats en bless you! ❤️ enJOY life 🤩 love from Holland 🌷🧘🏻♀️ thank you Realan 😘❤️
Much love to you too, Janna! ❤️
Yes I have those vision issues at times as well. I see like a thousand bright little lights swirling around plus optical migraines. It’s getting better though the further I recover
Nick was really hard on himself. He was only 24 and had all these high expectations and compared himself to his friends who were getting married and owning a house. How many 24 year olds are in that situation? He was doing fine.
Thanks for the praise I definitely feel like I’m not. lol
Thanks so much guys! Makes a lot of sense to me...definitely provides food for thought! ❤
No problem! I’m not saying that there aren’t other areas of recovery that are important but it makes so much sense, at least to me, when you sort of rewind and look at your life and kind of see how this whole thing developed
@@6473n64m19 Thanks for your feedback, Nick! I know that for me stress really really impacts the level of fatigue I experience at any given moment. I hav
I have had CFS for over 10 years and experienced my first panic attack this summer. I have had 4 panic attacks this summer which plac
Placed me in the ER. Your interview could not have come at a better time. I think that I even place pressure on myself to recover. Thanks again!
@@bobbiev7062 If you can really internalize that you are actually okay and it’s just the brain that’s going haywire and start to slowly put your life together, I think it will give you massive confidence that you can do this, you’re not broken and you are okay. It takes consistent effort though to avoid mental pitfalls of thinking that you have some sort of terminal illness. I really recommend some of the links I’ve posted, especially Miguel’s story it paints such a clear picture and I’ve personally really benefitted from it!
Best of luck! You’ve got this!
Great recovery story! Nicely done!
Thanks for listening, Lyn!
Thank you! I wish you best of luck on your recovery journey!
-Nick
This makes sense eternal anxiety choking anxiety. And comparisons of how I use to be. Identifying all symptoms as an anxiety attack may help me - I do have a lot of fears from what happened to me.
great story and interesting insights that i can really relate to x mine is all stress related x am trying to incorporate the TMS approach with brain training, its fascinating, the mind/body link is key here i think x i had cfs for 3-4 years back in 2006 after anxiety got worse then lost my mum, tried various things but only recovered when i massively reduced stress and anxiety, was well for 10 years then chronic anxiety for 4-5 years then lost my dad and brother got cancer and cfs returned but know i recovered once so can again x thanks for sharing links x
I think the proof is in the pudding right there! You did it once and can absolutely do it again! I think where it’s easy to get stuck is finding where the stress is coming from, as sometimes it’s not obvious. For me personally, sometimes it’s fear of symptoms, sometimes it’s the “boom-bust” when I’m not in a relaxed state yet, sometimes it’s life stress in general.
I think you have really good evidence here though and I think you are primed for recovery better than those who think this is 100% a physical condition...
Best of luck! Keep your head up you got this!!!
-Nick
Thanks so much for sharing, Sarah ❤️
@@6473n64m19 thanks Nick, sorry for late reply x weird thing today-have been in a flare for a few weeks and having to do less and less to find my baseline, been working at losing fear of symptoms and fully accepting them then today started feeling better around lunchtime and all symptoms just fell away x walked to 3 mins restaurant knowing that i could easily do it, i just feel different, hard to explain but like my body feels confident! need to really look into this stuff more 👍
@@seffie4363 exactly! I’m not saying to go out to the gym today and crush it... but I was going to ask if doing less and less was working or making the symptoms worse if you really break it down
@@seffie4363 If you think about chronic pain and symptoms as well, they are there as a danger signal. There are there to keep you safe... or so your brain thinks. People who recover are able to get there brain to no longer respond negatively to external stimuli. I’m not saying rest isn’t important, but the problem is that by “retreating” and just resting, at least in my opinion, you are showing your brain that activity is in fact dangerous and the brain will fire off stress chemicals at more and more things. If you jump in aggressively head first, you will get more symptoms. In reality you are “fine” but the symptoms may become so intense that they become traumatic in themselves and put us under even more stress... because of this, it’s easy why people can get stuck here for years or even decades.
This is why it may be best to show your brain, slowly but steadily, through your thoughts and actions, that you are safe. DNRS calls it “think better than you feel” which I like. I really like to tell myself that I am completely healthy, despite the symptoms, and live my life as happily as I can ( an extreme challenge if you are flared up, I know).
Ideally, in my eyes, improving kinda looks like: small amounts of activity, more confidence, less symptoms, more activity, more confidence, less symptoms... so on and so forth. It can be hard to believe, but many if not most recovery stories have this component
Thank you so much for this Raelan, what an honest and earnest interview with Nick and so glad to have found your channel. Through your channel I was able put a few pieces together that I had suspicion on but your channel has further confirmed that this and many other signals that our body sends are related to our fight or flight response being constantly activated by our nervous system and that your body needs to be in the rest and digest mode in order to heal. There is more than one way to achieve this and that is why you have many different modalities of healing and everyone’s mind and body is different which also accounts for the different approaches that worked for different people. I have realised that brain retraining helps in getting ourselves back into life but I also agree that one can try too hard to get better. Brain retraining programs can itself become stressful if you put too much pressure on yourself. I have one question for Nick since he mentioned The Lightening Process and DNRS. I am assuming, he may have tried both. Which one of them did he find more useful? There are common factors in both of them which is interrupting your mental loops but the LP follows a shorter process with more frequency and the DNRS follows a longer process of interruption with less frequency. I would like to know his opinion on which one he finds more useful if he can. Thank you so much for this great interview.
Hi NA! Yeah it totally is the chronic, runaway stress response that ravages is for sure. Underneath the fatigue and other symptoms, if you pay close attention you can feel the overstimulation. For me at the moment I use little snippets of both but I don’t really use them in a direct effort to attempt to get rid of my symptoms. So sometimes before bed I’ll picture myself feeling really well and calm the next day. I’ll picture how I want my day to go and how I want to feel, then kind of use the “stops” and maybe a brief visualization if there is a moment where I feel over the top symptoms, although I know that at least for me right now, it’s probably not going to stop them in their tracks. The key thing is to learn how to be more calm so that your brain doesn’t over react to stuff anymore, I think everyone is different in how they end up getting there. You might really like the Miguel Batista link I put in there called “How I recovered from CFS/Fibro/Pots”. That kid was extremely severe and got all the way better.
I hope this helps!
-Nick
nick champeau thank you so much for replying. I totally get you and yes any regimen which doesn’t resonate with you completely is bound to bring you stress. I find that visualisations can be done on their own as well for however long you want it to be. Their idea of using stop before it is to wire the stop with feeling calm so with practice in future when you say stop you should feel calm and stop your negative loops in its tracks. I don’t use the stops, l have developed my own language that resonates with me more and I like the visualisations part because it gets me out of thinking about me in the current condition.
I really appreciate your tip on staying calm for overall healing. I have watched Miguel’s videos thanks for that. I love that he explains things visually. It sticks.
Thank you
Same for me doing the Lightning Process. It worked so well so quickly I became anxious doing it more and more as I was sooo desperate to get better. That being said I know of people who have had tremendous results. Different strokes for different folks I guess
Nola, I'm so happy to hear that you are finding things that work for you! ❤️
Did you get fully better with LP?
"It's not a hardware problem; it's a software problem."
I’m sure I’m spacing here but I can’t find the links😬 Thank you for taking the time to put those together Nick! Wishing you the best as you move towards all of your goals.
Thank you for this interview! It is such as interesting perspective.
For me personally, I think anxiety was part of the cause and is a contributing factor to my CFS, although I believe there are also other factors. That said, I am very open to this way of healing since the body and brain are SO connected!
I thought this interview was very well delivered and Nick spoke really respectfully, especially considering this viewpoint could be a bit controversial. Thanks again to you both😊
Agreed, Katie! I'm so grateful to people who bravely share their experience. I'm glad you enjoyed this ❤️
Yeah so I think there are other factors as well that cause the maladaptive stress response, for sure. For me personally, it was the stress on my body from partying, not sleeping great, using stims all the time on top of the perfectionism, low self esteem and anxiety about my situation. If I had not treated my body that way, maybe I avoid cfs (though the other things make life not great, and quite honestly I feel like the physical abuse stemmed from my mental tendencies).
When I say anxiety, I’m really referring to the “ramping up” of the nervous system. If you are well past your stress threshold then virtually anything can give you symptoms or you may have symptoms all the time. Taking care of yourself, diet, sleep, relaxation I believe are very very important but so is training your brain out of its extreme reaction to external stimuli (anxiety) at this point it’s not “all in the head” rather it becomes learned. So expanding a bit inspite of symptoms can be a help. You just don’t want to push too hard through brutal symptoms or symptoms that are becoming worse and worse, although small flares after activity almost seem like a necessary part of improvement, at least for me.
I hope this helps! Thanks!
@@6473n64m19 this is really helpful thank you😊
That lockdown break was a life saver for me.
Lmao I long for it again
Yes, morning is the worst. I have to roll on top of the corners and edges of my bed in various angles to push out the tension and pain for a good couple hours before getting out of bed. And I have to often throughout the day, depending on the week/month massage my body like this against furniture to manage the pain
This particular symptom diminishes and goes away as I get my stress under control and believe that I am truly healthy and safe despite the symptoms that my brain is causing me. The morning symptoms in my view are a protection mechanism, because in essence that is what pain and symptoms are “oh that hurts, don’t do that”. You’re brain is giving you symptoms, in my opinion, because it’s afraid you are about to do something that will damage it. I would check out the “6 ways to create safety in the nervous system” video that is linked in the description as well as this link that I will post at the bottom of this comment. It’s a story about a kid who embraced the TMS model and made a full recovery from housebound and 24/7 symptoms and now lives an active and rewarding life. It’s an archive of a blog and therefore the spacing of the font is kind of messed up but I really hope you enjoy the story and find it motivating.
Best of luck in your recovery!
-Nick
web.archive.org/web/20191125205503/www.ryanwhoop.com/2019/05/09/im-back/
@@6473n64m19 thanks so much man!
@@juntjoonunya9216 no prob dude!
This was amazing. What a great story.
💖💖💖
Thanks for the great interview, Nick! I also owe a debt of gratitude to Sarno/Shubiner and the TMS method. I’m not sure where to find the Miguel Bautista link on stress thresholds that you mentioned, can you please advise? It sounds very interesting.
This one!
ua-cam.com/video/Hci8VPghz9c/v-deo.html
This one was huge for me and I still watch it when I need some reminders!
Thank you!
Wow! I also have visual snow. I haven't met anyone else who has it yet.
Dr Howard Schubiners article and TMS stuff in general has helped me recover so much. It’s the CORNER STONE of my cfs recovery
Whenever I stray away from it and look for more medical reasons and alternative reasons for why I may feel the way I do, the more I fall back. His work and similar things are absolutely the key
Amazing!! So happy to hear that.
This interview makes me think of Dr. Robert Naviaux's work about cell danger response! Thanks for the information, I always learn something with each interview.
Glad you like it! 💓
I think the cell danger response really explains the mind-body connection in CFS. I hope his work becomes more mainstream!
Very interresting..but I don't think that CFS is only a question of what is going on in our head.
No, I don't believe that either. From what I know, there always an infection involved. Reactivated viruses, due to stress, for instance.
Hi Veronique!
I don’t either. But I know that for me personally what is going on upstairs played a significant role in keeping me stuck. I think we can all agree that an over stressed body (which the mind is part of that, the two can’t be separated) is what perpetuates chronic illness and CFS. In particular. For me, coming to the realization that my brain and my thoughts played a massive role in getting me sick and keeping me stuck let go of enough stress to feel a reduction in symptoms to the point that I could do more activity without crashing. Also note that I’m not completely recovered, as I stated towards the end. I believe that implementing more sound habits such as consistently getting quality sleep, laying off stimulants in addition to challenging my symptoms at levels that are appropriate will get me all the way there.
For the time being, I essentially function like a normal person, just with more symptoms. I’m probably much more active physically than an average person, to be honest. And for me that’s good progress.
If you’re open to it, check out some of the links in the description. I’ve spent a lot of time putting theme together and there is several hours of content there. I hope you find them helpful.
Best of luck on your journey. Feel better! You can do this!
-Nick
I get the visual snow and aura thing. And yeah it’s terrifying.
Yeah it’s, atleast to me, a cornerstone of being hyper-stimulated
Hey. Thanks for sharing your story Nick and thank you as always Realan for doing your work.
Nick. I was wondering at what stage your eye snow/floaters went away and did they just vanish one day of was it a slow process?
I never got over them. They are still there. Don’t discount the other recovery stories. Unfortunately I’m still very symptomatic.
But if you fully recover from hyperstimulation it would go away, it has for many people😊
I dont think anxiety is the cause of your cfs but a lot of different stressors were. Anxiety maybe is keeping you locked/ill/unsafe.
So on a moment to moment basis it’s definitely not the thoughts in my head that are causing my symptoms right then and there, for sure. Throughout this time I have had “calm positive thoughts” while being symptomatic and I have also been “anxious as fuck” (lol) and have not had typical cfs symptoms in that moment. It’s sort of the perpetual stressed state keeping it going, at least in my opinion, and cutting off that fear/ anxiety is the key.
Ofcourse, being abusive to my body in a multitude of ways wasn’t useful, and maybe I would have avoided this shit show if I hadn’t done that, but it’s also true that a lot of people abuse the crap out of their bodies in a similar way and don’t get cfs. The mental/ emotional aspects are the difference
If I cannot walk two blocks without fatigue how can I go to the gym?
12:30 I have visual snow syndrome (and all the symptoms that go with it : eye floaters, afterimages, sensitivity to light, dizziness, migraines, blind spots... did you get rid of vss???
No unfortunately. I feel as if it may be one of the last symptoms to go as even in the “peak” of my recovery (lots of activity and almost no symptoms at all, I still had it), it’s definitely possible to cure but I feel as if you have to have been regulated for some time for the visual symptoms to entirely dissipate, although the dizziness and migraines in my experience do leave before the visual stuff which is good news. And at a certain point when you are just feeling good overall the vss just doesn’t bother you.
How did u go from passing out to going to the gym 4 x a week.? What did u do exactly and not do,?
So I wouldn’t be passing out per se, I hope I never came across as me literally passing out, but I had the “feeling of passing out” there is a big distinction there. In fact, one of my awakenings came from an event that I felt the most like I was going to pass out, but yet my, BP was high! And in that state there was no way I was going to pass out.
I would guess the visual snow is related to the "tacky"/pots thing and it's just particularly pronounced with you. I'll get that too occasionally when the symptom is "fun" as I'll kinda leave this dimension a bit
I’ve also heard of people who have it perpetually and not as of a result of pots. I also first got it before I experienced any orthostatic symptoms. There’s a particular part of the brain that is responsible for vision, I used to know the name of it but I forgot, and apparently in this study that part of the brain is lit up like a Christmas tree in MRIs. Simply put, this part of the brain is overactive and I have heard people recovering from this particular symptom as well when there stress levels have been lowered for some time, although I haven’t quite reached that level yet. I hope that helps
@@6473n64m19 so you wouldn't get it necessarily in conjunction with the dizziness when standing?
@@juntjoonunya9216 it can worsen with a flare but generally speaking there was no correlation. Although I can say I have absolutely had dizziness on standing for long stretches of time and this does go away entirely when stress is reduced. Stress comes in many forms obviously but the most prominent in my experience are the fear and trauma that the symptoms themselves put on me. A huge step to overcoming this is understanding that it is the brain that is doing this and that you are not broken or damaged. Genuine belief that you are fine can literally shut down the signals that are causing the stress hormones to be released in the first place. It may not be an overnight process but with belief, persistence and courage it can happen
hello dear ones, i'm always so confused. to me such stories sound like mine and I apparently have no cfs but adrenal fatigue / hpa axis dysfunction ...?!? ... (I have no swollen lymph nodes and immune system signs but severe other symptoms such as blood sugar fluctuations, blood pressure fluctuations, can no more walking, only reading for a short time in the morning (then the rest of the day not because my brain can't function anymore), sometimes can't even unlock the smartphone because it feels like my brain is going to switch off at any moment, drowsiness and much more much more). is adrenal fatigue at the last stage the same as CFS after all? Many greetings from Germany. Unfortunately, none of the doctors here are familiar with the whole subject
I think I can help here. In my “expert” opinion, it’s all the same shit. It doesn’t matter what the label is, it’s simply a result of the nervous system being in overdrive. I seriously recommend the links Raelan put in the description. They have helped me to understand that I am actually safe and okay and it’s just the brain that is causing these chronic symptoms because it thinks it’s keeping me safe. Internalizing this has helped me tremendously. I’m going to link a separate article at the end of this comment. It’s an archived blog so this spacing is strange, but read it fully and I think it may be the thing that gets you on the right path.
Best of luck, you got this!
-Nick
web.archive.org/web/20191125205503/www.ryanwhoop.com/2019/05/09/im-back/
@@6473n64m19 thank you dear nick! I also get the feeling that everything (AF, CFS, OT) is essentially the same with different characteristics and, for example, the immune system-specific symptoms may only be related to how you got into the disease - if you get cfs through a virus then there are these symptoms. if over stress, then not. perhaps.
I'll look at the links in a moment. thank you very much and all the best to you!
Heyyy @Nicholas Champeau, in the last 1.5 years with regard to a few individual problems - yes a little. But some other problems are worse than at the beginning, for example the massive restrictions on concentration. have had a new supplement for a few days. very simple but it seems to help me a little. this is a sugar that supplies the body with energy independently of insulin. The sugar is called galactose. not cheap but I'll keep testing it. i hope so much that the body reach homeostasis again at some point. I finally want to have a normal life again… walking and watching TV and reading and working or whatever 🥺🥵🤞 are you also struggeling with this illness or these kinds of illnesses?
dude looks in great shape im jealous lol
I may have thrown a casual flex in for the thumbnail lmao. But Thanks bro! I’m not quite where I was before but almost!
Wonder how he's doing now
I suspect my brain & nervous system is doing this - but how to I fix that?
I get the heavy head feeling. It’s my most prevalent symptom of the fatigue. I was diagnosed with pots but I didn’t have that test for the blood flow, but I think I have the same issue. On the tilt table my hr went over 30 bpm idk if I really have pots or if it’s all cfs. I also take mestinon and Midodrine right now! And they don’t help at all!! I took florinef first. No relief from any. I’ve been to naturopaths and integrated doctors all a waste of $$. How do we lose the fear? I keep trying - I think it’s the root. I do trauma therapy... I can’t figure it out. I’ve also had anxiety/ panic disorder for over ten years. I am mostly housebound because I’m fatigued non stop, taking medical leave from work. Can’t walk or drive. Did you get sick in the car when driving from the pots symptoms ?
Also I wanted to ask. Because I was bedbound after a stressful event literally 10 years ago. And paxil brought me out of it. Never thought I’d get this sick again I kinda went into remission for years. I feel this is an anxiety / stress disease. I also have high levels of ebv but I think it’s high cause the non stop stress. Do you take any antidepressants now for the anxiety?
Also. Sorry been writing these as I watch the video 😂 I think what may help you get to your 100% is Joe Dispenza- breaking the habit of being yourself book. He has a few good books. He also has a ton of great UA-cam videos. And a course you can take
Thanks for sharing this, Stephanie ❤️
@@stephg4273 Hi Stephanie. The pots/ OI stuff is the absolute worst and I’m sorry you are going through that. It’s something I wouldn’t wish on my worse enemy. If I was in a particularly severe crash then yes. Last summer after a stint of working very hard and, again, being old anxious me, I had a really nasty crash and I was moving out of my apartment and I felt like I could barely make it home. So yes when it was severe. Standing in stores even got pretty torturous for me as well.
In regards to the anti depressant, I think the fact that Paxil got you out of bed really goes to show that it is the stress response keeping you stuck and, just going out on a limb here, not a medical professional lol, the ebv stuff would be taken care of. I currently do not take an anti depressant though I do take a low dose beta blocker that can be mildly helpful at times.
Maybe it would be helpful to find out where the stress is coming from? Are you eating poorly, staying up late? Maybe you constantly think of what you should be doing and how you feel like you are missing out on life (big one for me). Or maybe it’s the symptoms themselves that are traumatic and keeping you in this never ending loop.
I’m not saying to push your way out, I think that can be a bad idea but what I can say is that what got myself out of some of my most challenging times is doing just a bit more than I thought I could and then thinking “damn I just did that, maybe I’m healthy”
I like to think about this at times almost like an injury. Given that other variables to reduce stress on your body are accounted for, let’s say you were to tear a muscle. Sure you need to let it heal, but if you want a strong bicep again. You need to train it. And it may yell at you after training, and it may feel like shit for a bit, but that’s okay, because it’s getting stronger. What you don’t want to do is go so hard that your tendons snap and you have to start all over. Also, challenging yourself a bit builds your belief, which can be huge. I hope that helps!
-Nick
Help me Nick 😭
Where are you at now? I’m sorry I haven’t looked at this video in so long
Childhood trauma too
What was your heart rate while standing?
I didn’t measure it. However at my worse it did race and I experienced orthostatic intolerance symptoms to the point that i feared standing up at all at my worse. Standing in stores and going for walks was a nightmare for me. Lowering my stress and realizing the issue was my brain and it’s stress response on the body reduced and got rid of this symptom in its entirety
How long u took to recover
@@6473n64m19 man this is encouraging for me. This is my big one... my stress response to standing is so bad I get shortness of breath like a full panic attack. Would love to see more from you!
@@FreshAgenda thanks for the comment! Yeah I think I’ll be back at some point, perhaps with my own channel talking about my own takes on cfs and recovery from it. I want to be 100% first. I did slide back from this interview, but nonetheless I’m running 3-4 days a week for 3 miles (did it today, even with a hangover! Lmao), lifting 3-4 days a week, playing some golf, stuff like that. I’m very symptomatic at times and it’s still typical of me to have 24/7 symptoms and “crashes” as we like to call it, but ultimately full recovery will be dependent on what I do, because I’ve learnt that recovery isn’t something that happens to you but rather, something you take action and do. So, given I take those actions you should hear from me sooner than later
@@6473n64m19 you commented to another person on here that when you strayed away from the TMS basis you tended to decline. I find this is the same for me. Steve Ozanich has been helpful in seeing more into that.
That being said, I feel like all the "type T" traits have been compounding my entire life. I check all the boxes. It is becoming more and more clear to me that the way I interact with my life and trying to control every single aspect of it, including other people which is not possible, finally caught up to me and I became stuck in fight or flight. As you know symptoms create the fear loop that feeds them. Constantly resisting the symptoms seems to be a factor in being stuck.
Software issue not a hardware issue.
Hi Raelan love your channel but I wish you'd make these recovery videos shorter. Having me/cfs I find it very difficult to watch a 50 minute UA-cam video
I appreciate that, Paul. Totally understandable! It's challenging to do, and many people tell me that they love hearing the longer interviews. My compromise is adding the timestamps so that people can just watch the parts they want to 😊
@@RaelanAgle no..long story covers A to Z topics in their recovery. We love to watch it this way. Its very helpful 💐💐💐
31:00 so said that he believes that CFS is a result of anxiety. Orthostatic intolerance and mast cell activation don't develop because of anxiety. Let's please not mix up psychological stuff with ME again! It's so frustrating.
That he was able to exercise extensively after reading that article could be explained by a dopamine surge. People with ME lack dopamine and other neurotransmitters. Which causes and intensifies PEM.
Also, he's not recovered. And this story will do harm to a lot of people.
I was this person who tried exercising like crazy and made myself sick every time, a got worse through the years.
Hi Forisma! Thanks for taking the time to write the comment, I appreciate your viewpoint. In the time stamp that you were referencing, I had been experiencing orthostatic intolerance symptoms (heavy legs and body, brain fog, dizziness, light headedness and, at times when it was severe, temporary vision loss) for about 6 months at that point. In my experience, OI for me had been a key symptom that I would experience when my, shall I say “organism” (mind, body, emotional state) were highly highly stressed. When I had the sort of “ah-ha” moment, I believed what had happened is that the thought I had took enough stress off me that I had a reduction in symptoms and was able to exercise with some quality intensity. Additionally, it’s important to note that this reduction in symptoms and ability to exercise stayed with me for months after this moment and I felt good enough where I often had symptom-free days despite my increase in activity levels. Unfortunately, when I went back to work the following fall I did experience some more symptoms as I became more stressed, but I still was able to exercise often spending an hour or more at the gym exercising. So for me, realizing that the brain was behind many of my chronic symptoms was key to reducing stress and therefore, getting rid of OI.
Now about my advice...
when it comes to the setbacks I’ve had, I can see that other factors have played a role such as lacking quality sleep, using drugs or alcohol (unfortunately) to push through symptoms or simply out of bad habits I’ve created and fears around work, etc.
Maybe I was perhaps too blunt in my interview but I do think challenging symptoms in order to reduce fear of them and program your brain to not react in that way is important. For example when I was very crashed out after a set back this past fall, what brought me back to a baseline of, what I would call “mild cfs” was challenging myself periodically and proving to myself that I’m not broken. I used movement and exercise in small increments to do that...
Am I all the way there? No. But I still think my story is worth sharing and I think I’m going on a positive trajectory and not a negative one. Perhaps I didn’t illustrate it well but there were several points where things were looking very dire for me... But now I’m playing golf, going to the gym 5 days per week. The other day I banged out 90 push ups in a row and the day before the interview I ran a 5k on the treadmill, which is solid progress. Getting all the positive habits in place (and yes, not pushing ALL the time, which I’ll admit is a mistake and I’m sorry if I made it seem like this was a solution) will lead to me getting all the way there.
If you are open to some different approaches that may make a difference in your recovery, definitely check out some of the links in the description, I spent a lot of time putting those together...
Best of luck on your health and healing journey!!!
-Nick
@@6473n64m19 as far as I can see, your link collection is an "all in your head" mentality mantra. I've been around with this ME thing for a while, so I've seen it all.
Honestly, there's nothing new in that approach for me. I've tried this approach myself. It might work for some people.
As I said, increasing neurotransmitters like dopamine due to positive self talk and possibly in combination with exercise and mindfulness, is enough for some people to substantially recover (I think, mostly men, because of the hormonal differences).
For me, I don't have much stress and I live like a monk. I eat like a monk, I meditate like a monk, I certainly avoid stress on my system and I don't drink alcohol of caffeine because you know, it makes me sick.
I go to the gym within my limits. I'm thankful I still can do it. Mild exercise.
Whenever I have energy after all this, and my work, and working out, I try to enjoy my life and meet up with friends.
I seem to slowly progress.
But it's not due to the "all in your head" mantra.
I read scientific stuff.
I take supplements which have been shown to help with the puzzle pieces of ME like MCAS (food intolerances you were talking about is MCAS).
Maybe I'll be able to recover some day.
But this video, unfortunately it will be harmful for a lot of folks like me, who will take this advise to the heart.
This approach made me worse in the past. I burned out. And it took me ages to recover.
I know a lot of people will not like my comments.
But I'm sick of the positivity mantra, as it can simply be harmful. Not everyone will have an equal neurotransmitters surge due to positivity mantras and will crash like hell.
This is why I'm trying to be vocal (depending on my energy) in the hope that it will help someone out there.
First