Melatonin: The woman who owns the health food store suggested a new brand of melatonin and it's much more effective that the brand I've been using. It's called "Source Naturals" and I get it in 1 mg. chewable pills. I read a research paper in JAMA from April 2023 on the inconsistencies of melatonin gummies. Some had much more than noted on the label; some and no melatonin and CBD. Without noting it on the label, some of them had both. I wrote one of the listed researchers, and heard back. He told me to look for the USP label which is the most that supplements are certified. (Then Source Naturals aren't USP but the health food store owner knows the company and the president and quality control people.)
@@catchappie IMO the worst thing to do, when you suffer from conditions who aren't understood well yet, taking any kind of active pharmaceutical ingredient - especially when the ingredient works contradictory.
Just discovered your videos and could cry just to hear these debilitating symptoms validated out loud. I have such a hard time describing some of the things I experience to my friends and family. I tend to describe the heaviness I feel in my body like there are 80 lb weights on my limbs, that someone filled my body with liquid cement, or to walk feels like I am trying to walk through a swamp of thick mud and I’m in up to my neck. Thank you for hosting these important discussions. ❤
I have added Yoga Nidra to My list to not only help with flares but to avoid them. Yoga Nidra is just lying down and listening to the instructor. Helps with stress, brings in parasympathetic nervous system, creates a state of deep rest for healing. I will also use it in the middle of the night if I can’t sleep. It keeps me from Becoming distressed about not sleeping and will often make me gradually fall asleep!
I've recently discovered I have ME after 9 years of misdiagnoses and seeing countless specialists to have a TH-cam algorithm to finally give me the correct diagnosis 😅. I do majority that you mentioned in this vid, but I was also dealing with palpitations for the last 9 years with 10-12k a day without being able to figure out why or any doc being able to give me an answer. And having noticed a slow recovery over the years by implementing many of the things you mentioned in the vid, the thing that really helped bring my palpitations down by 90%, and improved my overall condition was breathing exercises, and vagus nerve stimulating devices and changing my mindset and trying to let the negative emotions of fear and frustration go and having acceptance. Exercise is also key in recovery. From being bed bound at my worst, I forced myself to walk as far as I could which at the time was end of the road with intense vertigo and lightheadedness to now daily walk of 30-40 minutes with mild symptoms, which can be challenging but just having the ability to do it has a huge impact on your mental and emotional state. And I try not to miss a days walk and I know the days I don't go for a walk I feel worse. But sometimes the flare ups can be severe enough where I just decide to rest. Running I noticed has a significant improvement in my mental state. I try to run for 10 min 2x a week which I had to build up to. After my run my mind is noticeably clearer, and my tolerance to electronic devices increases. And if I stop running I start getting migraines 2-3x a week compared to when I run I get 1 a month if that. But there is the post exertional malaise that comes after exercise so finding the balance of getting the positive effects of exercises and not over exerting to cause a major flare up is a tricky balance but the more you do it the more in tune you become with your baseline. Also for me Accupuncture was a life saver. At my bottom when I was close to throwing in the towel, the calming effect of accupuncture has on the body for an ME sufferer is truly great. After a session you can literally feel the nervous system go from a flight or fight state into a zen like state. The effects are temporary but for the few days of relief I receive it is a much needed break.
Thanks for your advice and helpful videos. I have CFS/ME for over 40 years. I look out for getting too cold, because that triggers pain and therefor exhaustion too. So for me helps hotpacks, Stoov, (=heated cushion) , anything that helps me get warmer. Either in or out of bed. Too much noise triggers brainfog and related problems. So watching tv I then try to chose wisely. Or without sound, but with undertitling. I am still learning to set bounderies, either physical, of emotional, or mental.
As both ME/CFS patient and np doctor, I would like to mention that drinking big amounts of water alone will dehydrate rather than hydrate you in the end, especially when you've got low circulatory volume like with ME/CFS. You will need to add some sodium too it. I'd advice either to add 3g of salt to a liter water or use Oral Rehydration Solution (it's also got about 3.5g of salt per liter). I wouldn't recommend sport drinks, because they're mostly sugar, no sodium. Personal things that help me during a crash: meditation, no TV, classical music or mantra music (repetitive patterns in music relax your CNS), cuddle with loved ones or animals (if that's physically possible) for oxytocin, and of course all the other things you mentioned. It's a pretty good list!
I take about a 1/4 teaspoon of sea salt in the palm of my hand, throw it in my mouth and chase it down with a big glass of water. I don't like the taste when adding salt to the water itself.
In my experience sugar helps, especially after longer exertions. Before knowing about ME/CFS, I realized getting sick after I exertet myself, like after doing my groceries getting typical symptoms of PEM. Taking any kind of sugar mitigated all symptoms. You can see the downside of this, because as a result of that my body weight raised over time. Not understanding any cause resulted in banning sugar as much as possible, resulting in not recovering from PEM symptoms for months. During that time I started reading a diagnosis manual for ME/CFS, because I wanted to understand. That way I found out, that there is an ATP issue involved and as a result of that things looked different. I realized two things: a) Sugar had an influence to my symptoms; b) even I can crash after short exertions, very often I can time it to about 90 minutes of constant (not high) exertions. I am not a doctor and therefore have no medical education, but I tried to figure out how or why ATP could cause my conditions. As I understand the issue, there are different ways of ATP production. But if the production of ATP isn't working as intended, there is a sugar treshold for about 90 minutes and after that most needed ATP relys on body fat or amino-acid metabolism. The funny thing is, getting a heavy crash always comes with a "flash" like an adrenaline shock, like blood is flooded with huge amounts of adrenaline (dizziness, sweating, palpitation), so that I can't even sit and have to lay down (if I can) or have to let my body fall down, to avoid uncontrolled falling. I am not educated enough to understand it right, but as I understood, adrenaline is used to make more energy available by activating fat metabolism. Sorry if I'm saying stupid things, English isn't my main language and especially in medical topics things are not always named similar - even it is often latin based.
On better days, when I can cook something, I make extra and freeze in portion sizes. I helps when I'm crashed to still be able to have a healthy meal in stead of junk food. I live alone so self reliant here.
1:09 learning to let go of the guilt and shame of letting people down and only being able to be present sporadically, was the hardest thing to deal with mentally 😢 I just discovered your videos and I’m legit in awe of how you and a lot of the comments hit the nail on the head 🙌🏼
The public library near me sent me regular books and audio books by mail because I am disabled. I would listen to them and put them back in the library bag and the post office would send them back to the library. Maybe your library provides a similar service.
Good list. Thank you for doing it. Just thought I would mention that for me massage causes a crash in the same way physical exercise does (much to my surprise), so I need to avoid it. Also, I'm glad you can watch TV but I think for a lot of people, perhaps those more severe, this adds to symptoms rather than relieves them. I don't have a solution to the deep boredom of resting. I like down as much as possible and break essential tasks into small chunks with lying down in between. I meditate and do deep body relaxation like yoga nidra, on very low volume on repeat or use my own internal voice and imagination to do the same. Listening to a familiar audiobook on repeat can help some people as it's distracting from thpughts but less stimulating than TV. Diaphragmatic breathing with long slow breaths also helps me. Thank you for recording these.
I agree, the "deep boredom of resting" is very difficult to deal with--when I get excessively bored or understimulated my mood seems to dip, so it's tricky trying to find a good balance. So hard finding activities that are restful but also enjoyable/engaging. I love reading, but my brain gets too taxed, especially during flare-ups, so most days I ether can't read or have to strictly limit my time reading; I am able to watch tv if it's relaxing--like historical dramas--but can't watch anything that's stressful or too stimulating. If anyone has ideas regarding activities that are relaxing but not overly boring, I'd love to hear them!
@@emileconstance5851 I doodle with coloured pencils sometimes. It means I can enjoy the process without being too attached to the outcomes. It has to be time limited though on small squares of paper
If I feel a flare coming, or if I know one may be coming because I’ve had a busy week, I always make sure that I have easy, healthy food in the refrigerator, like rotisserie chicken, hummus, fruit and vegetables to juice, etc. I do eat snacks reasonably, as well. I order my groceries from Instacart when I just can’t get around to getting groceries. I also clear my schedule as much as possible, meaning sometimes I have to cancel plans. From there, I typically rest in the bed and ride it out until it passes. Since I’ve done over 20 UBIs (ultraviolet blood irradiation), I seem to recover quicker, experience fewer crashes, and have more sustained energy. Miss you, Johnny! Sending love to everyone experiencing chronic illness!🤍🤍🤍
Rhythmic breathing exercises really help me tap into the parasympathetic system and relax. These meditations that don’t require visualization or much mental work are the best (speaking for myself, but want to share in case it’s helpful) because it calms the body without taxing the mind. I count and breathe in strongly for 4 quick counts, hold a moment, then slowly exhale as softly as possible 5-7 counts at a slower pace, hold, then start over. As long as the exhale is longer it really helps me. Breath, the book by James Nestor really helped me create a toolbox for flare ups - particularly left nostril breathing. Love the comments here with all the helpful tips. I’m learning so much. Hate the disease (multiple conditions, for many of us), love the community (online and off) that makes it doable. Having a space to be in solidarity and not have to explain what PEM and other realities are like to people really is healing. Yay community. Thank you everyone 🫶🏼
Really good summary. Going through 2nd severe crash inside of a month. Years since this happened. Rest. Rest but in bad place. Awful medical care. All the they want is money. Being harassed. That does not help.
These are great ideas, Johnny! I think distraction is the best thing. You like to watch TV and I like to listen to audible books. That way, I can close my eyes rest and be totally distracted from my uncomfortable situation!
I'd agree with everything you said. The only thing that was a surprise was the heart rate monitor thing, I'd never thought about it. I might look into it and consider purchasing one. The other thing is that when you're in a severe crash and you live alone it's hard to eat well. The most important thing is to do the best you can. I find it difficult switching off sometimes and find meditation really useful at those times. Thank you for this content, you have a lovely smile :)
Thank you for the kind words. The heart monitor approach works best when you have had a CPET test done. Its a detailed measurement of your oxygen levels, it basically lets you know when your body goes into your anaerobic threshold. I have a video with Dr. Snell, he was one of the people who pioneered this type of testing for ME/CFS. That might help give you a good idea before you buy anything. =)
@@fight4me747 Good luck on getting the CPET. Which doc referred you for it? I saw my cardiologist and he said No... not relevant or necessary. I haven't asked the pulmonologist. I still haven't found a PCP doc who knows ME/CFS.
To those suffering with CFS/ME, I would consider seeing a speech therapist. It helped immensely when I had CFS/ME. They are not only for speech, they help with mental processing and cognitive fatigue. I am currently seeing a speech therapist again due to a concussion. Concussion symptoms mirror some CFS/ME symptoms. I would suggest you do a video about speech therapy and CFS/ME.
There is one downside of this suggestion: In ME/CFS there is an ATP issue involved, meaning: At times there is a lack of ATP production, causing any cell (including brain cells, but not only) lacking in power. Another point is: ME/CFS is a physical condition, yet not cureable and it is degressive. You said, you had CFS/ME, meaning you do not have it any more. So it is impossible you suffered ME/CFS.
@@SensaSand yelled at you?!? 😢 people with invisible chronic illnesses already feel guilt, shame, loneliness your support system shouldn’t make you feel worse 😟 I’m so sorry if this is something that hurt you 🫤 My husband is my biggest cheerleader and support. I celebrate when I can shower, wash my hair (sometimes he has to help me the shampooing/conditioner 🙄) I’ve had to really be ok with allowing help 😒 Anyhoo he also celebrates my small daily victories and is patient with me when I’m stuck in bed for days 🫤
I have a whirlpool bath. When we moved into this place, the tub was a mess and had gunk in the lines. I've been too tired to do much about it, besides the obvious scrubbing of the tub and so on. Still, I've only been taking showers in that tub. So finally, I got busy and put about a gallon of white wine vinegar into a tub of hot water and a goodly squirt of Dawn dishwashing liquid. I let it soak. Periodically, I'd go in and run the whirlpool to knock the stuff out of it. I drained the tub after a few hours and then scrubbed the tub again, thoroughly rinsed it, and it's ready to go. I've got a nice lavender bubble bath, and I'm going to start using it. It took a year. This in itself has been depressing for me, because I used to be a serious house proud person. I'm glad I've finally gotten it ready. I'm looking forward to my first nice float. Other things that help me during a flare are getting my mind off of it and distracting myself. I read a lot of mysteries and thrillers These take me out of myself. Which is often a place I need to be. I'm also very slowly teaching myself Russian, working on my French and Spanish, and picking up a little Irish. I'm lucky in that I have a lot of interests, and even if I can't do much anymore, it's very enjoyable for me to watch, say, house restoration channels, makeup videos, and animal videos. Some channels I recommend strongly for making you feel better are Leslie the Bird Nerd, The Girl With the Dogs, Smitha Deepak's makeup channel, Cooking with Alia . . . there are many. There's nothing better for a person, even for a healthy person, than getting outside of your own head for awhile.
THANK YOU SO MUCH.Have just looked this up,in for a dreadful & unusual Crash. Invaluable info ,i do know BUT I go blank in a Crash,so great to HEAR It❤Hope you're doing ok❤😊
Love your videos and advice. During crashes, not only is my heart rate and rhythm off but so too is my breathing. Prior to being diagnosed, I had many blood tests done and each time my blood would test acidic= metabolic acidosis. Did some research- holding on to too much carbon dioxide. It’s takes a lot of energy, but when I am to, I do deep breathing exercises. Automatically my exhalation time is longer than the inspiration time. This really helps. Your advice in a previous video about picking warning signs just before a crash is also very helpful. There’ a lot of research on sunlight therapy- not just vitamin D but also we get BDNF ( Brain derived Neurotrophic factor) A lot of sunlights therapy and Alzheimer’s Dementia. We get Brain fog and cognitive deficit. Sadly, in crashes with metabolic acidosis, you get photosensitivity and it’s very bad. But I try about three minutes sunlight
I've been getting into doing a lot more of these things lately and the difference they make is amazing. Also just a tip but fruit has a lot of natural sugars in them so I'd recommend maybe staying clear of fruit during crashes
Thank you for helping us. I am struggling with awful gastro symptoms that are not going away after 5 months....I thinks its connected to a biopsy procedure I went through which was horrific and extremely painful just before I crashed. Currently I'm in bed as my fatigue is so bad that I feel unwell, nausea, increased pain, tingling in my feet, very itchy skin. I was thinking of asking my GP for a diet plan whilst in a crash along with gastro issues. Your advice is much appreciated x
Something that I have heard helps is electrolyte drinks. I would personally skip the Gatorade because they gave so much sugar but there are electrolyte drinks out there that don't have any.
There are electrolyte waters now with no flavor or sugar. These I drink daily now as when I had my last crash, my husband made me drink a Pedialyte and I felt a lot better by morning. Hydration (not just water, but balancing salts) was a big game changer for me.
When I want to eat well but don't feel up to cooking, I keep frozen chicken breasts and frozen broccoli on hand and cook them in the microwave with a little butter and salt. Not gourmet but works in a pinch.
I add specific parasympathetic response inducing breathing exercises. I make a point, of slowing my type A ass down, dropping everything for the time being and lying in "corpse pose" with my eyes closed and breathing slowly, easily and naturally. I will add classic"Progressive relaxation and "box breathing" to this as needed to get me to just drop into a deeply relaxed, semi meditative state, and stay in it for as long as i can. The rest and reset i get from this purposeful resting greatly speeds up my recovery from PEM/overdoing it.
What helps me is resting in bed while giving myself reiki healing. I took a class about ten years ago, and it has been a one of the best investments I ever made (not really expensive either), and a life saver because it mitigates the negative effects of insomnia. I give myself reiki at least an hour a day, using reiki music to guide me through 12 hand positions on the body. It's very relaxing, I get into a slower brain wave pattern and I will often doze off when doing it, but not for more than 5-15 minutes usually.
1.A massage gun helps if i have no one around to give me a massage or can't make it to the spa. 2. Hot water bath to alleviate pain and stiffness (if i can manage to shower) 3. Agressive supplementing with b-12 5000 mcg and sulbutiamine helps me return to my baseline faster and eases fatigue and cognitive impairment
Please tell me how do I find my Baseline. I have a Fitbit so I can monitor my Heart rate , but never have understood the baseline. Just in a really bad flare up. Have been dealing with fatigue and ME for many years but only diognosed last year as i could not get any doctors to believe I was sick. Finally found a young Dr who heard me and sent me to a specialist. I don’t understand after doing all the things you have mentioned, bar 2, I still get very sick again. I will eat clean, exercise, plenty of water, disconnect mentally, rest and have stopped talking to people about it, because I understand that they don’t understand. I am also a Christian and Luv my Lord with all my Heart, but when I’m told to just have faith and declare that I’m healed, that’s just not enough any longer. I’m so tired now and lost all my passion for life. Can you help. Blessings and Luv to youDear man, you are such a genuine, kind man🥰
Hey there! I did a test called a CPET test that helped me determine a baseline. BUT, I understand most people cannot do that test. So the other way to do it is to constantly take notes of how you feel along with the heart rate. When you find yourself feeling "ok", keep a close eye on your heart rate. Notate it constantly until you find a pattern. If you constantly see that (example) 105 beats per minute triggers your symptoms than you want to stay under that when you can. Its obviously impossible to do constantly, but you do your best. This is not medical advice and I know it has many flaws, but that is one way to figure out a general baseline.
It's hard when the other adults in my life treat me like I don't have it. If I stay in bed they get annoyed. Even though they know I've had it 8 years and I have a wheelchair but they pick an choose when you understand, plus they throw it in your face in arguements.
Some of these I can’t do. Have to use the computer a lot for work. I don’t work full time but when I’m working it’s on the computer. 😢 Also my bathtub doesn’t work so a salt bath would be a lot of work to fill. Especially when I have to go back into the office and can’t take afternoon nap. I’ll probably be coming home and sleeping so not much energy for much else.
Thank you my family has a hard time understanding this love my tablet puts me in a good mood watching the herd elephants. I do not like the phone, and I go no where
Natural sun/heat is restorative as you body isnt using energy to heat itself so can use that energy somewhere else. I find music is a magic energy finder so listen to alot of music but I cant continuously for long so for 10-15 min then turn it off for 10-15 min. Keeping warm during a crash is my hardest thing, if I can keep warm I can heal and come back but I will stay crashed if I cant warm up
If anyone is looking for an affordable wearable i highly recommend a xiaomi mi smart band. I was able to borrow one from our local support group and bought one pretty quickly. Great heart rate and sleep info. My sister who has had a fitbit for years actually bought the model up from me instead of another fitbit!
Thank you for your videos. I just came across you channel and have been watching the videos. I am only 7 months in and still trying to figure this out. It is getting slowly worse and looking for answers.
@@fight4me747 Did you have a hard time convincing your doctor this was real? I am sorry I have not been through all your videos yet. In fact, I need to find a new doctor due to the unwillingness of the ones I have seen to even consider this.
Solidarity - I went through soooo many specialists and doctors and tests before being diagnosed with my conditions. It’s a marathon for sure, and finding the right doctors can be tough. My pcp last year and neurologist were the most helpful and thorough - very grateful they were able to see that something was “off” beyond my fibromyalgia, spinal stenosis, etc. Finding the right doctors who know your history well really makes all the difference. I hope you found your way to a great one 🫶🏼 And if not, that it is coming soon. Took over a year for me to be diagnosed with everything. Wishing you a successful seamless path forward toward awesome providers who hear and understand you fully 💝
Red bull?! Im surprised to hear that. That stuff flares me up instantly. I find outdoors really does help. Many people don't think it helps much but Im glad to see others benefit from sunshine too.
Be careful with energy drinks and even caffeine! They give you a false energy and stress your body more. I the long run they can actually make you worse.
..... proceed with caution..... I've learned the hard way that false energy can be a slippery slope....ME + single mother of 3 & insanely hectic life had me between 80-120mg of Adderall per day (for perspective, the FDA approved max dose is 60mg/day & I was under close medical supervision)......a couple years of that leveled me up in my illness and now I do pretty much nothing, my children have learned the ways they can help take care of me so I can take care of them...if absolutely necessary, I may take 10mg of Adderall to get me through a couple of vital hours and a crash is guaranteed for several days after.... Btw, I didn't start my me diagnosis journey until I went to my Dr to quit energy drinks bc the insane amount it took me to get through each day was literally killing me. Although, coffee does seem to help me with insomnia.
Just finding this... I sustained a severe traumatic head injury in 2015. Still dealing with fixing broken jaw, teeth face other problems and issues.. from what I have heard this is just like everything i and trillions of other's go through with TBI/Traumatic Brain Injury Is this already known or is it cause I'm just discovering this... or maybe I have it due to my TBI and injuries/PTSD and so on.. 🤔
who has money for massage and speech therapist and well , any other type of thing you would have to pay for, or - during a crash get dress get in a cab and go to them. i would really like some help. but when it comes to every group or person i listen to for helpful things - it comes down to $ and where do you get that if you can't work. Serious question.
boy-oh-boy did you ever ‘hit’ home regarding too much electronics and then the Epsom salt bath! WOW, I am in the middle of a bad flareup bad just was so sTIFF AND SORE everywhere that I did not want to take an Epsom salt bath and I sat there and watched electronics all night…UHG…
My crash makes me stupid, I forgot to do anything but lay around and listen to UTube. Florida sunshine 🌴🌞 is the best medicine to keep depression away. I do sit on my balcony for 0Vit D and attitude. Have small ted light, FIR sauna like a sleeping bag, in house bands for eary resistance training, but when crashed I just want candy and naps.
5:32 I’ve found a massage therapist who knows my body enough to know where she can and can’t touch me and goes fairly soft for that exact reason, to not make my pain worse.
Thank you for the info. I am new to this condition & long covid malaise, so I am learning how to manage. Can you give an update? do you still suffer from this or has it gotten better?
Hi there, i know you did a video on wearables a while ago. I just watched it. But would you be able do an another one, up to date now and a bit more extensive? The last video threw up questions. Im wondering if you still use fitbit or is it out of date. ive no idea. What do you use now? Do you have to do a cpet to get your baseline or can you work it out from the wearable? Do you need to use expensive piece of kit or have you heard of any cheaper but effective gear? It would be so great to get a deeper conversation going on this. If you can help it would be great. Thanks Johnny
@@fight4me747 52 years of health and suddenly I was diagnosed in 2020 with syrinx and progressively getting worse with symptoms that Syringohydromyelia cause. Last summer I spent most of the time indoors out of the heat and was constantly exhausted and resting did not help. Trying to find out if I have M.E./CFS too.
How often usually it takes till you get back to being more available to people? I find 2 weeks typical, but one month would’ve been ideal.. just less realistic
You have talked about Diet and "eating clean" but I am not finding any good resources about what that means. The most I have found is a reference to Mediterranean Diet or Anti-inflammatory Diet. Do you have a book(s) you can recommend? A special video that is helpful? I've poked around and am not finding anything relating to Diet and that is the main thing I'm uninformed about. Help Please! Anyone??? (And thanks again for al the wonderful videos you have made and are sharing with us. I try to watch at least a couple a day. This is a lot to take in.)
What I do is try and stay away from "inflammatory" foods. But my diet changes a lot. I find I stop tolerating things sometimes. Lots of trial and error. But the constant for is to stay away from "Inflammatory" foods.
@@fight4me747 I've lost 25 pounds in the past couple of years and find I'm having trouble with foods that never bothered me before. One thing about ME/CFS, everyday there is something new happening to my body. Everyday there is something new to learn. Thanks for all of your encouragement. Hope you are feeling well today. Also find another brand of health monitor smart watch that is now on sale half-price. Spade and Co. I think it's going to be a good deal to try out the monitoring. It does not have ECG but I'm not sure I need that. Yet.
Hey there, Just wondering if you’re still taking the LDN and if it’s helping you? If so, did you feel worse at first (side effects you had?) and what dose do you take? Thanks
Yeah I’m 31, very healthy. That is normal for ME. Mines use to stay at 123 + but it’s that mental factor too if you think about it too much. I noticed if your outside in the heat that definitely will affect it, also since after realizing a lot of that I noticed it is avg around 118 but slowly seems to be stabilized now there
I frequently refer to myself, as Im a 60yr old female…I say im like a cracked & chipped teacup. you cannot put boiling water in chipped cup, or fill it too full. you need to hold the cup lightly, and handwash.
Hey there, it really depends on the person and how hard you push yourself. It can extend the crash. I've had crashes last days and have had some last months. The key is to rest. I know that sounds obvious, but a lot of people don't listen to their body. Hope you feel better soon
I havent a clue what the rest of the video will be after number 3...why coz i turned my phone off 🤭 p.s even in a crash, never lose your sense of humour, sometimes its the only thing we have control of 😉
I lie down, listen to/ follow yoga nidra meditations. Dr. Andrew Huberman (Stanford neuroscientist) highly recommends yoga nidra for its beneficial effects on the nervous system. Ally Boothroyd has a wonderful yoga nidra TH-cam channel. She incorporates the physiological breathing/cyclic sighing that Huberman advocates.
Carbs convert to sugar. Sugar is something we should stay away from according to many doctors. Im not a doctor so I would def talk to a professional before you do anything
WOW! you can move during the crush and take a bath! I can not take a bathe even without crush! I am in my bed and can not move my arms or fingers even. Writing this is painful
I'm kinda the same tbh, my ME isn't so much characterized by crashes and better periods, but by large swings in my energy and capability week to week with the occasional crash.
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Thank you for your videos I’ve been living with CFS for 40 years I’m so tired of being tired
Its definitely a tough illness.
Me too, since 1988 😭😵💫
❤
Since 1999
2016 I've had it since.
For a condition characterised by fatigue, insomnia is a particularly cruel symptom….
It really is. It becomes a terrible cycle.
Yes so true!!
OH, YEAH! I like your phrasing: "particularly cruel". I have to laugh because I'd try to take a nap right now if only I could sleep!
Melatonin: The woman who owns the health food store suggested a new brand of melatonin and it's much more effective that the brand I've been using. It's called "Source Naturals" and I get it in 1 mg. chewable pills. I read a research paper in JAMA from April 2023 on the inconsistencies of melatonin gummies. Some had much more than noted on the label; some and no melatonin and CBD. Without noting it on the label, some of them had both. I wrote one of the listed researchers, and heard back. He told me to look for the USP label which is the most that supplements are certified. (Then Source Naturals aren't USP but the health food store owner knows the company and the president and quality control people.)
@@catchappie IMO the worst thing to do, when you suffer from conditions who aren't understood well yet, taking any kind of active pharmaceutical ingredient - especially when the ingredient works contradictory.
Just discovered your videos and could cry just to hear these debilitating symptoms validated out loud. I have such a hard time describing some of the things I experience to my friends and family. I tend to describe the heaviness I feel in my body like there are 80 lb weights on my limbs, that someone filled my body with liquid cement, or to walk feels like I am trying to walk through a swamp of thick mud and I’m in up to my neck. Thank you for hosting these important discussions. ❤
I have added Yoga Nidra to
My list to not only help with flares but to avoid them. Yoga Nidra is just lying down and listening to the instructor. Helps with stress, brings in parasympathetic nervous system, creates a state of deep rest for healing. I will also use it in the middle of the night if I can’t sleep. It keeps me from
Becoming distressed about not sleeping and will often make me gradually fall asleep!
I've recently discovered I have ME after 9 years of misdiagnoses and seeing countless specialists to have a TH-cam algorithm to finally give me the correct diagnosis 😅. I do majority that you mentioned in this vid, but I was also dealing with palpitations for the last 9 years with 10-12k a day without being able to figure out why or any doc being able to give me an answer. And having noticed a slow recovery over the years by implementing many of the things you mentioned in the vid, the thing that really helped bring my palpitations down by 90%, and improved my overall condition was breathing exercises, and vagus nerve stimulating devices and changing my mindset and trying to let the negative emotions of fear and frustration go and having acceptance.
Exercise is also key in recovery. From being bed bound at my worst, I forced myself to walk as far as I could which at the time was end of the road with intense vertigo and lightheadedness to now daily walk of 30-40 minutes with mild symptoms, which can be challenging but just having the ability to do it has a huge impact on your mental and emotional state. And I try not to miss a days walk and I know the days I don't go for a walk I feel worse. But sometimes the flare ups can be severe enough where I just decide to rest. Running I noticed has a significant improvement in my mental state. I try to run for 10 min 2x a week which I had to build up to. After my run my mind is noticeably clearer, and my tolerance to electronic devices increases. And if I stop running I start getting migraines 2-3x a week compared to when I run I get 1 a month if that. But there is the post exertional malaise that comes after exercise so finding the balance of getting the positive effects of exercises and not over exerting to cause a major flare up is a tricky balance but the more you do it the more in tune you become with your baseline.
Also for me Accupuncture was a life saver. At my bottom when I was close to throwing in the towel, the calming effect of accupuncture has on the body for an ME sufferer is truly great. After a session you can literally feel the nervous system go from a flight or fight state into a zen like state. The effects are temporary but for the few days of relief I receive it is a much needed break.
Thanks for your advice and helpful videos. I have CFS/ME for over 40 years. I look out for getting too cold, because that triggers pain and therefor exhaustion too. So for me helps hotpacks, Stoov, (=heated cushion) , anything that helps me get warmer. Either in or out of bed. Too much noise triggers brainfog and related problems. So watching tv I then try to chose wisely. Or without sound, but with undertitling. I am still learning to set bounderies, either physical, of emotional, or mental.
Is feeling extra cold an ME/CFS symptom too? I thought that it’s because I’ve lost so much body fat/muscle.
I too binge watch an awful of tv. I suffer with ME/CFS and Fibro plus several other conditions. Thank you so much for your videos.
As both ME/CFS patient and np doctor, I would like to mention that drinking big amounts of water alone will dehydrate rather than hydrate you in the end, especially when you've got low circulatory volume like with ME/CFS. You will need to add some sodium too it. I'd advice either to add 3g of salt to a liter water or use Oral Rehydration Solution (it's also got about 3.5g of salt per liter). I wouldn't recommend sport drinks, because they're mostly sugar, no sodium.
Personal things that help me during a crash: meditation, no TV, classical music or mantra music (repetitive patterns in music relax your CNS), cuddle with loved ones or animals (if that's physically possible) for oxytocin, and of course all the other things you mentioned. It's a pretty good list!
Great advice, thank you!
I take about a 1/4 teaspoon of sea salt in the palm of my hand, throw it in my mouth and chase it down with a big glass of water. I don't like the taste when adding salt to the water itself.
In my experience sugar helps, especially after longer exertions. Before knowing about ME/CFS, I realized getting sick after I exertet myself, like after doing my groceries getting typical symptoms of PEM. Taking any kind of sugar mitigated all symptoms. You can see the downside of this, because as a result of that my body weight raised over time. Not understanding any cause resulted in banning sugar as much as possible, resulting in not recovering from PEM symptoms for months. During that time I started reading a diagnosis manual for ME/CFS, because I wanted to understand. That way I found out, that there is an ATP issue involved and as a result of that things looked different.
I realized two things: a) Sugar had an influence to my symptoms; b) even I can crash after short exertions, very often I can time it to about 90 minutes of constant (not high) exertions. I am not a doctor and therefore have no medical education, but I tried to figure out how or why ATP could cause my conditions. As I understand the issue, there are different ways of ATP production. But if the production of ATP isn't working as intended, there is a sugar treshold for about 90 minutes and after that most needed ATP relys on body fat or amino-acid metabolism.
The funny thing is, getting a heavy crash always comes with a "flash" like an adrenaline shock, like blood is flooded with huge amounts of adrenaline (dizziness, sweating, palpitation), so that I can't even sit and have to lay down (if I can) or have to let my body fall down, to avoid uncontrolled falling. I am not educated enough to understand it right, but as I understood, adrenaline is used to make more energy available by activating fat metabolism.
Sorry if I'm saying stupid things, English isn't my main language and especially in medical topics things are not always named similar - even it is often latin based.
On better days, when I can cook something, I make extra and freeze in portion sizes. I helps when I'm crashed to still be able to have a healthy meal in stead of junk food. I live alone so self reliant here.
Smart. Thats a good strategy.
And much to be said for crock pots and instapots! They do so much of the work for you.
1:09 learning to let go of the guilt and shame of letting people down and only being able to be present sporadically, was the hardest thing to deal with mentally 😢
I just discovered your videos and I’m legit in awe of how you and a lot of the comments hit the nail on the head 🙌🏼
Thank you again. AUDIOBOOKS. These are saving my life as I truly can’t do anything at all. You are a star!
Mine too!!
The public library near me sent me regular books and audio books by mail because I am disabled. I would listen to them and put them back in the library bag and the post office would send them back to the library.
Maybe your library provides a similar service.
Pretty much a perfect list.
Personally for me I binge YT on my phone which is basically the equivalent of your TV.
Me too! I watch so much TH-cam when I don’t have energy for anything else.
Me too. There’sa duality beteeen something being bad for you vs the damage of deprivation :) im learning to balance it, with tv and diet.
Me too❤❤😊😊
Good list. Thank you for doing it. Just thought I would mention that for me massage causes a crash in the same way physical exercise does (much to my surprise), so I need to avoid it. Also, I'm glad you can watch TV but I think for a lot of people, perhaps those more severe, this adds to symptoms rather than relieves them. I don't have a solution to the deep boredom of resting. I like down as much as possible and break essential tasks into small chunks with lying down in between. I meditate and do deep body relaxation like yoga nidra, on very low volume on repeat or use my own internal voice and imagination to do the same. Listening to a familiar audiobook on repeat can help some people as it's distracting from thpughts but less stimulating than TV. Diaphragmatic breathing with long slow breaths also helps me. Thank you for recording these.
I agree, the "deep boredom of resting" is very difficult to deal with--when I get excessively bored or understimulated my mood seems to dip, so it's tricky trying to find a good balance. So hard finding activities that are restful but also enjoyable/engaging. I love reading, but my brain gets too taxed, especially during flare-ups, so most days I ether can't read or have to strictly limit my time reading; I am able to watch tv if it's relaxing--like historical dramas--but can't watch anything that's stressful or too stimulating. If anyone has ideas regarding activities that are relaxing but not overly boring, I'd love to hear them!
@@emileconstance5851 I doodle with coloured pencils sometimes. It means I can enjoy the process without being too attached to the outcomes. It has to be time limited though on small squares of paper
If I feel a flare coming, or if I know one may be coming because I’ve had a busy week, I always make sure that I have easy, healthy food in the refrigerator, like rotisserie chicken, hummus, fruit and vegetables to juice, etc. I do eat snacks reasonably, as well. I order my groceries from Instacart when I just can’t get around to getting groceries. I also clear my schedule as much as possible, meaning sometimes I have to cancel plans. From there, I typically rest in the bed and ride it out until it passes. Since I’ve done over 20 UBIs (ultraviolet blood irradiation), I seem to recover quicker, experience fewer crashes, and have more sustained energy. Miss you, Johnny! Sending love to everyone experiencing chronic illness!🤍🤍🤍
Great advice. Smart to have easy made food ready to go!
Rhythmic breathing exercises really help me tap into the parasympathetic system and relax. These meditations that don’t require visualization or much mental work are the best (speaking for myself, but want to share in case it’s helpful) because it calms the body without taxing the mind. I count and breathe in strongly for 4 quick counts, hold a moment, then slowly exhale as softly as possible 5-7 counts at a slower pace, hold, then start over. As long as the exhale is longer it really helps me. Breath, the book by James Nestor really helped me create a toolbox for flare ups - particularly left nostril breathing. Love the comments here with all the helpful tips. I’m learning so much. Hate the disease (multiple conditions, for many of us), love the community (online and off) that makes it doable. Having a space to be in solidarity and not have to explain what PEM and other realities are like to people really is healing. Yay community. Thank you everyone 🫶🏼
Great advice and reminders. I also find that praying and listening to relaxing music helps.
Really good summary. Going through 2nd severe crash inside of a month. Years since this happened. Rest. Rest but in bad place. Awful medical care. All the they want is money. Being harassed. That does not help.
These are great ideas, Johnny! I think distraction is the best thing. You like to watch TV and I like to listen to audible books. That way, I can close my eyes rest and be totally distracted from my uncomfortable situation!
I'd agree with everything you said. The only thing that was a surprise was the heart rate monitor thing, I'd never thought about it. I might look into it and consider purchasing one. The other thing is that when you're in a severe crash and you live alone it's hard to eat well. The most important thing is to do the best you can. I find it difficult switching off sometimes and find meditation really useful at those times. Thank you for this content, you have a lovely smile :)
Thank you for the kind words. The heart monitor approach works best when you have had a CPET test done. Its a detailed measurement of your oxygen levels, it basically lets you know when your body goes into your anaerobic threshold. I have a video with Dr. Snell, he was one of the people who pioneered this type of testing for ME/CFS. That might help give you a good idea before you buy anything. =)
@@fight4me747 Ahh, thank you so much, I'll have a look x
I became several shades darker during a 15month period
Has anyone else noticed a similar change
@@fight4me747 Good luck on getting the CPET. Which doc referred you for it? I saw my cardiologist and he said No... not relevant or necessary. I haven't asked the pulmonologist. I still haven't found a PCP doc who knows ME/CFS.
Boost!!
To those suffering with CFS/ME, I would consider seeing a speech therapist. It helped immensely when I had CFS/ME. They are not only for speech, they help with mental processing and cognitive fatigue. I am currently seeing a speech therapist again due to a concussion. Concussion symptoms mirror some CFS/ME symptoms. I would suggest you do a video about speech therapy and CFS/ME.
There is one downside of this suggestion: In ME/CFS there is an ATP issue involved, meaning: At times there is a lack of ATP production, causing any cell (including brain cells, but not only) lacking in power. Another point is: ME/CFS is a physical condition, yet not cureable and it is degressive. You said, you had CFS/ME, meaning you do not have it any more. So it is impossible you suffered ME/CFS.
I'm too exhausted to speak during a crash
God you are helping me so much. I will show your videos to my husband tonight. Hope he watches.
I’ve already sent 2 of these videos to my husband and he legit cried because he also totally gets it.
@@HopefulCanadian that’s so sweet. My husband didn’t even watch. He yelled at me.
@@SensaSand yelled at you?!? 😢 people with invisible chronic illnesses already feel guilt, shame, loneliness your support system shouldn’t make you feel worse 😟 I’m so sorry if this is something that hurt you 🫤
My husband is my biggest cheerleader and support. I celebrate when I can shower, wash my hair (sometimes he has to help me the shampooing/conditioner 🙄)
I’ve had to really be ok with allowing help 😒
Anyhoo he also celebrates my small daily victories and is patient with me when I’m stuck in bed for days 🫤
@@HopefulCanadian ❤️❤️❤️ thank you 🙏
@@HopefulCanadian your husband is a true angel!! God bless you both!! ❤️
Please need to understand resting is productive, healing is accomplishing something.
Cold A/C and a weighted blanket...headphones with sleep music help on crash days...
I need to get a weighted blanket!
Thank you. I get tons of blankets and play the rain from you tube at night 🌉🎉❤🎉
Yes!!! Oh my gosh. 😂. I need this for survival in humid areas….
These things have helped me also , the weighted blanket , audible earphones , Crash weeks .. thank you ,
Weighted blankets help with panic attacks as well.
I have a whirlpool bath. When we moved into this place, the tub was a mess and had gunk in the lines. I've been too tired to do much about it, besides the obvious scrubbing of the tub and so on. Still, I've only been taking showers in that tub. So finally, I got busy and put about a gallon of white wine vinegar into a tub of hot water and a goodly squirt of Dawn dishwashing liquid. I let it soak. Periodically, I'd go in and run the whirlpool to knock the stuff out of it. I drained the tub after a few hours and then scrubbed the tub again, thoroughly rinsed it, and it's ready to go. I've got a nice lavender bubble bath, and I'm going to start using it. It took a year. This in itself has been depressing for me, because I used to be a serious house proud person. I'm glad I've finally gotten it ready. I'm looking forward to my first nice float.
Other things that help me during a flare are getting my mind off of it and distracting myself. I read a lot of mysteries and thrillers These take me out of myself. Which is often a place I need to be. I'm also very slowly teaching myself Russian, working on my French and Spanish, and picking up a little Irish. I'm lucky in that I have a lot of interests, and even if I can't do much anymore, it's very enjoyable for me to watch, say, house restoration channels, makeup videos, and animal videos. Some channels I recommend strongly for making you feel better are Leslie the Bird Nerd, The Girl With the Dogs, Smitha Deepak's makeup channel, Cooking with Alia . . . there are many. There's nothing better for a person, even for a healthy person, than getting outside of your own head for awhile.
I've been decorating my bedroom since April and it's now October..everything takes so long!
THANK YOU SO MUCH.Have just looked this up,in for a dreadful & unusual Crash. Invaluable info ,i do know BUT I go blank in a Crash,so great to HEAR It❤Hope you're doing ok❤😊
Love your videos and advice. During crashes, not only is my heart rate and rhythm off but so too is my breathing.
Prior to being diagnosed, I had many blood tests done and each time my blood would test acidic= metabolic acidosis. Did some research- holding on to too much carbon dioxide.
It’s takes a lot of energy, but when I am to, I do deep breathing exercises. Automatically my exhalation time is longer than the inspiration time. This really helps.
Your advice in a previous video about picking warning signs just before a crash is also very helpful.
There’ a lot of research on sunlight therapy- not just vitamin D but also we get BDNF ( Brain derived Neurotrophic factor)
A lot of sunlights therapy and Alzheimer’s Dementia.
We get Brain fog and cognitive deficit.
Sadly, in crashes with metabolic acidosis, you get photosensitivity and it’s very bad. But I try about three minutes sunlight
I've been getting into doing a lot more of these things lately and the difference they make is amazing. Also just a tip but fruit has a lot of natural sugars in them so I'd recommend maybe staying clear of fruit during crashes
Great advice. I usually try and eat high antioxidant and low sugar fruits, but sometimes tasty watermelons get the best of me.
Thank you for helping us. I am struggling with awful gastro symptoms that are not going away after 5 months....I thinks its connected to a biopsy procedure I went through which was horrific and extremely painful just before I crashed. Currently I'm in bed as my fatigue is so bad that I feel unwell, nausea, increased pain, tingling in my feet, very itchy skin. I was thinking of asking my GP for a diet plan whilst in a crash along with gastro issues. Your advice is much appreciated x
Something that I have heard helps is electrolyte drinks. I would personally skip the Gatorade because they gave so much sugar but there are electrolyte drinks out there that don't have any.
There are electrolyte waters now with no flavor or sugar. These I drink daily now as when I had my last crash, my husband made me drink a Pedialyte and I felt a lot better by morning. Hydration (not just water, but balancing salts) was a big game changer for me.
Good ones! I’m gonna share with my family, so they realise I’m not the only one occasionally logging off from reality
When I want to eat well but don't feel up to cooking, I keep frozen chicken breasts and frozen broccoli on hand and cook them in the microwave with a little butter and salt. Not gourmet but works in a pinch.
I've found using a projector for binge watching instead of a TV/monitor/back-lit screen during crashes can make a big difference.
I add specific parasympathetic response inducing breathing exercises.
I make a point, of slowing my type A ass down, dropping everything for the time being and lying in "corpse pose" with my eyes closed and breathing slowly, easily and naturally. I will add classic"Progressive relaxation and "box breathing" to this as needed to get me to just drop into a deeply relaxed, semi meditative state, and stay in it for as long as i can.
The rest and reset i get from this purposeful resting greatly speeds up my recovery from PEM/overdoing it.
My way of resting has been to try and read. It occupies my mind and keeps me still
I do a lot of those things to prevent a Crash too.
Vegetables and fruit have carbs..... I appreciate the video... God bless!
These are great tips! 👍🏻 I utilize a lot of these too.
What helps me is resting in bed while giving myself reiki healing. I took a class about ten years ago, and it has been a one of the best investments I ever made (not really expensive either), and a life saver because it mitigates the negative effects of insomnia. I give myself reiki at least an hour a day, using reiki music to guide me through 12 hand positions on the body. It's very relaxing, I get into a slower brain wave pattern and I will often doze off when doing it, but not for more than 5-15 minutes usually.
1.A massage gun helps if i have no one around to give me a massage or can't make it to the spa.
2. Hot water bath to alleviate pain and stiffness (if i can manage to shower)
3. Agressive supplementing with b-12 5000 mcg and sulbutiamine helps me return to my baseline faster and eases fatigue and cognitive impairment
Very helpful thank you & best of luck.
Please tell me how do I find my Baseline. I have a Fitbit so I can monitor my Heart rate , but never have understood the baseline.
Just in a really bad flare up. Have been dealing with fatigue and ME for many years but only diognosed last year as i could not get any doctors to believe I was sick. Finally found a young Dr who heard me and sent me to a specialist. I don’t understand after doing all the things you have mentioned, bar 2, I still get very sick again. I will eat clean, exercise, plenty of water, disconnect mentally, rest and have stopped talking to people about it, because I understand that they don’t understand. I am also a Christian and Luv my Lord with all my Heart, but when I’m told to just have faith and declare that I’m healed, that’s just not enough any longer. I’m so tired now and lost all my passion for life.
Can you help.
Blessings and Luv to youDear man, you are such a genuine, kind man🥰
Hey there! I did a test called a CPET test that helped me determine a baseline. BUT, I understand most people cannot do that test. So the other way to do it is to constantly take notes of how you feel along with the heart rate. When you find yourself feeling "ok", keep a close eye on your heart rate. Notate it constantly until you find a pattern. If you constantly see that (example) 105 beats per minute triggers your symptoms than you want to stay under that when you can. Its obviously impossible to do constantly, but you do your best. This is not medical advice and I know it has many flaws, but that is one way to figure out a general baseline.
I have had it for 40 years now.Awful 😢 It never ends
It's hard when the other adults in my life treat me like I don't have it. If I stay in bed they get annoyed. Even though they know I've had it 8 years and I have a wheelchair but they pick an choose when you understand, plus they throw it in your face in arguements.
Some of these I can’t do. Have to use the computer a lot for work. I don’t work full time but when I’m working it’s on the computer. 😢 Also my bathtub doesn’t work so a salt bath would be a lot of work to fill. Especially when I have to go back into the office and can’t take afternoon nap. I’ll probably be coming home and sleeping so not much energy for much else.
i find that herbal the, coconut water and water with for ex. cucumber is a great way for me to hydrate when i crach.
Thank you my family has a hard time understanding this love my tablet puts me in a good mood watching the herd elephants. I do not like the phone, and I go no where
Natural sun/heat is restorative as you body isnt using energy to heat itself so can use that energy somewhere else. I find music is a magic energy finder so listen to alot of music but I cant continuously for long so for 10-15 min then turn it off for 10-15 min. Keeping warm during a crash is my hardest thing, if I can keep warm I can heal and come back but I will stay crashed if I cant warm up
I have a Thermatex heating pad that works well for my muscle aches and sciatica.
It might work for your issue,too.
If anyone is looking for an affordable wearable i highly recommend a xiaomi mi smart band. I was able to borrow one from our local support group and bought one pretty quickly. Great heart rate and sleep info.
My sister who has had a fitbit for years actually bought the model up from me instead of another fitbit!
THANK YOU SO MUCH FOR THIS YOU TUBE PROGRAM. FROM GEORGIA ❤❤❤😊😊😊
Wonderful help !! Thank you!!
Thank you for your videos. I just came across you channel and have been watching the videos. I am only 7 months in and still trying to figure this out. It is getting slowly worse and looking for answers.
Hey there, just go easy and don't "over do" it until you have some more answers from your doc.
@@fight4me747 Did you have a hard time convincing your doctor this was real? I am sorry I have not been through all your videos yet. In fact, I need to find a new doctor due to the unwillingness of the ones I have seen to even consider this.
Solidarity - I went through soooo many specialists and doctors and tests before being diagnosed with my conditions. It’s a marathon for sure, and finding the right doctors can be tough. My pcp last year and neurologist were the most helpful and thorough - very grateful they were able to see that something was “off” beyond my fibromyalgia, spinal stenosis, etc. Finding the right doctors who know your history well really makes all the difference. I hope you found your way to a great one 🫶🏼 And if not, that it is coming soon. Took over a year for me to be diagnosed with everything. Wishing you a successful seamless path forward toward awesome providers who hear and understand you fully 💝
Thanks for an informative video!
For me it's bed rest, sunshine outdoors, classical music, meditation, and a case of Red Bull....
Red bull?! Im surprised to hear that. That stuff flares me up instantly. I find outdoors really does help. Many people don't think it helps much but Im glad to see others benefit from sunshine too.
@@fight4me747 It gives me much needed energy! That and pitchers of ice tea! 🤪
Be careful with energy drinks and even caffeine! They give you a false energy and stress your body more. I the long run they can actually make you worse.
..... proceed with caution.....
I've learned the hard way that false energy can be a slippery slope....ME + single mother of 3 & insanely hectic life had me between 80-120mg of Adderall per day (for perspective, the FDA approved max dose is 60mg/day & I was under close medical supervision)......a couple years of that leveled me up in my illness and now I do pretty much nothing, my children have learned the ways they can help take care of me so I can take care of them...if absolutely necessary, I may take 10mg of Adderall to get me through a couple of vital hours and a crash is guaranteed for several days after....
Btw, I didn't start my me diagnosis journey until I went to my Dr to quit energy drinks bc the insane amount it took me to get through each day was literally killing me.
Although, coffee does seem to help me with insomnia.
I have all these symptoms after covid I don't know what to.do smallest activity causes so many symptoms I use to be very healthy
Hello, a significant amount of people are developing ME/CFS after covid. Try and find a ME literate doctor and talk to them about it.
Just finding this... I sustained a severe traumatic head injury in 2015. Still dealing with fixing broken jaw, teeth face other problems and issues.. from what I have heard this is just like everything i and trillions of other's go through with TBI/Traumatic Brain Injury
Is this already known or is it cause I'm just discovering this... or maybe I have it due to my TBI and injuries/PTSD and so on.. 🤔
So helpful.😊
who has money for massage and speech therapist and well , any other type of thing you would have to pay for, or - during a crash get dress get in a cab and go to them. i would really like some help. but when it comes to every group or person i listen to for helpful things - it comes down to $ and where do you get that if you can't work. Serious question.
Exactly?!? Especially being that we usually can’t get high paying jobs if any jobs at all because of this problem?!?
Keep searching for ways to get passive income.
Stock trading I guess but that’s stress itself
boy-oh-boy did you ever ‘hit’ home regarding too much electronics and then the Epsom salt bath! WOW, I am in the middle of a bad flareup bad just was so sTIFF AND SORE everywhere that I did not want to take an Epsom salt bath and I sat there and watched electronics all night…UHG…
My crash makes me stupid, I forgot to do anything but lay around and listen to UTube. Florida sunshine 🌴🌞 is the best medicine to keep depression away. I do sit on my balcony for 0Vit D and attitude.
Have small ted light, FIR sauna like a sleeping bag, in house bands for eary resistance training, but when crashed I just want candy and naps.
5:32 I’ve found a massage therapist who knows my body enough to know where she can and can’t touch me and goes fairly soft for that exact reason, to not make my pain worse.
have you used magnesium
oil?
Thank you for the info. I am new to this condition & long covid malaise, so I am learning how to manage. Can you give an update? do you still suffer from this or has it gotten better?
Been going through a crash for a month or more. All I wanna do is sleep when I’m not working.
Sorry to hear that. I hope you come out of it soon
Hi there,
i know you did a video on wearables a while ago. I just watched it. But would you be able do an another one, up to date now and a bit more extensive? The last video threw up questions. Im wondering if you still use fitbit or is it out of date. ive no idea. What do you use now? Do you have to do a cpet to get your baseline or can you work it out from the wearable? Do you need to use expensive piece of kit or have you heard of any cheaper but effective gear? It would be so great to get a deeper conversation going on this. If you can help it would be great.
Thanks Johnny
Hello, I will try to do a video on that soon. =)
Hey there, just did a quick follow up video on this. Posted today. =)
Are you almost fully recovered? And how long was your recovery journey from the day you started to put the pedal down on recovery?🙏🏼
Im not recovered at all. Just maintaining.
@@fight4me747 are you aiming for recovery or just waiting for cure / managing symptoms?
@@djVania08 Im doing everything I possibly can to recover. I have yet to achieve that though.
Hello are you still posting videos? I recently found your site and curious if you are better.
Hello, I still post from time to time. I have not recovered.
@@fight4me747 52 years of health and suddenly I was diagnosed in 2020 with syrinx and progressively getting worse with symptoms that Syringohydromyelia cause. Last summer I spent most of the time indoors out of the heat and was constantly exhausted and resting did not help. Trying to find out if I have M.E./CFS too.
Hey again,
Any side effects when you started up the LDN with mood/worsening of fatigue etc.
Any info/feedback is greatly appreciated!
None. Just some insomnia in the beginning. But everyone is different.
I started LDN ,currently at the 1 mg and increasing by half every 2 weeks. Noticed having more insomnia. Does that level out the longer you’re on it?
Find a music genre that you like when you have a crash. For me it's brown noise, glass bowls or classical piano music like clair de lune
How often usually it takes till you get back to being more available to people? I find 2 weeks typical, but one month would’ve been ideal.. just less realistic
You have talked about Diet and "eating clean" but I am not finding any good resources about what that means. The most I have found is a reference to Mediterranean Diet or Anti-inflammatory Diet. Do you have a book(s) you can recommend? A special video that is helpful? I've poked around and am not finding anything relating to Diet and that is the main thing I'm uninformed about. Help Please! Anyone??? (And thanks again for al the wonderful videos you have made and are sharing with us. I try to watch at least a couple a day. This is a lot to take in.)
What I do is try and stay away from "inflammatory" foods. But my diet changes a lot. I find I stop tolerating things sometimes. Lots of trial and error. But the constant for is to stay away from "Inflammatory" foods.
@@fight4me747 I've lost 25 pounds in the past couple of years and find I'm having trouble with foods that never bothered me before. One thing about ME/CFS, everyday there is something new happening to my body. Everyday there is something new to learn. Thanks for all of your encouragement. Hope you are feeling well today.
Also find another brand of health monitor smart watch that is now on sale half-price. Spade and Co. I think it's going to be a good deal to try out the monitoring. It does not have ECG but I'm not sure I need that. Yet.
Hey there,
Just wondering if you’re still taking the LDN and if it’s helping you? If so, did you feel worse at first (side effects you had?) and what dose do you take?
Thanks
Hello, still on it. The max dose is usually 4.5mg. Some people like to start much lower and work their way up. Thats a good convo for a Doctor though.
BTW…If diabetic, no salt baths or foot soaks.
My crash is put th tv on a boring channel and close my eyes while listening but then I am out to dreamsville
My hr is 120 after standing up😢. I try to walk slowly outside, sometimes it keeps at 120-130, and sometimes it's drops to 90-110. It's not normal?
Yeah I’m 31, very healthy. That is normal for ME. Mines use to stay at 123 + but it’s that mental factor too if you think about it too much. I noticed if your outside in the heat that definitely will affect it, also since after realizing a lot of that I noticed it is avg around 118 but slowly seems to be stabilized now there
I frequently refer to myself, as Im a 60yr old female…I say im like a cracked & chipped teacup. you cannot put boiling water in chipped cup, or fill it too full. you need to hold the cup lightly, and handwash.
How long is a crash please? It’s been 2 weeks…:(
Hey there, it really depends on the person and how hard you push yourself. It can extend the crash. I've had crashes last days and have had some last months. The key is to rest. I know that sounds obvious, but a lot of people don't listen to their body. Hope you feel better soon
I havent a clue what the rest of the video will be after number 3...why coz i turned my phone off 🤭 p.s even in a crash, never lose your sense of humour, sometimes its the only thing we have control of 😉
I lie down, listen to/ follow yoga nidra meditations. Dr. Andrew Huberman (Stanford neuroscientist) highly recommends yoga nidra for its beneficial effects on the nervous system. Ally Boothroyd has a wonderful yoga nidra TH-cam channel. She incorporates the physiological breathing/cyclic sighing that Huberman advocates.
Problem is im not sure how good for us all these emf wifi 5g gadgets and if they actually making us sick too ???
How long time this crush longs?
days, weeks sometimes months
I rest. It’s all I can do. I feed myself and feed my cats and that’s about all I do!
Showers are on “good” days but can sometimes use up all my spoons 😒
(Not sure if anyone else refers to spoon therapy 🤷♀️)
many symptoms are DIRECT results of insomnia/insufficient rest.
In a flare my skin so sensitive I cant tolerate bedsheets or tight clothing. So a massage would be a torture for me.
Is there a reason why you avoid carbs with CFS?
Carbs convert to sugar. Sugar is something we should stay away from according to many doctors. Im not a doctor so I would def talk to a professional before you do anything
Look in to LDN
Been on it for years! Made a video about it! It has def helped
When I am in a flare, that is when Au tend to eat junky comfort food.
Magnesium glycinate has give me a little more energy !!
WOW! you can move during the crush and take a bath! I can not take a bathe even without crush! I am in my bed and can not move my arms or fingers even. Writing this is painful
no crashes, just perma shit here :(
Sorry to hear that
I'm kinda the same tbh, my ME isn't so much characterized by crashes and better periods, but by large swings in my energy and capability week to week with the occasional crash.