ME/CFS - My tricks for SLEEPING better!

[@RaelanAgle]

What has helped you when it comes to getting better sleep? Share it here!

[@benslearninglounge7676]

Similar point to the one about reading before bed, but having a -small- chamomile/lavender tea before bed! The routine of which means my brain associates it with sleep after having it. Plus, it tastes great!

[@RaelanAgle]

@@benslearninglounge7676 Tea?! This is shocking. I did not see this coming from you. Haha but seriously, yes! This is a great idea. It's all about ritual and routine isn't it!

[@AshleyOliviaDaCosta]

Sex. But also chamomile/lavender tea. My daughter calls it “calm coffee” or calming tea.

[@Coliekokker]

Mouthtaping

[@lianpeet3502]

Love your top tips and the others mentioned by everyone else. For me the most important thing was moving out of the bedroom with my snoring husband!! A tough decision but a great choice. He loves it now and we both have adjusted. The worst is when we go away and need 2 rooms!! Definitely am careful about only watching calming things before bed. And I intentionally think about all the things I am grateful for as I drift off to sleep, instead off all the things I could worry about! My sleep has markedly improved as I've been healing but I will give more thought to snacking in the evenings, thank you.

[@Butterflylovely5]

1-Sleep alone 2-getting sun ☀️or vit D 3- hot bath 🛀 4- stretch before bed like yoga 🧘🏻‍♀️ would do it 5- be carful what foods you eating/ no sugar, no alcohol, gluten etc 6- don’t watch tv before bed and no internet at all at least a couple hours before bed. 7- reading 📖 a book 8- keep consistent bed schedule go to bed at the same time and wake up at the same time every day! 9- don’t eat or drink at least 3 hour before bed 10- journaling 11- exercise 12- prayer/ meditation before bed 13- do your night routine like brushing your teeth washing your face etc like one hour before bed 14-ete mask or ear plugs 15- keep the room cool and dark 16- in my case because I have mcas Zyrtec helps me a lot 17- don’t use sleeping pills I have been doing all of this for years after suffering chronic insomnia and they do work like a charm 👍🏻 good night everyone 💤 😴

[@RaelanAgle]

Wow, this is incredible! I'm so happy for you 💓

[@beautyfromashes14]

Hi I also deal with MCAS. Thanks for the tips.

[@EvolverWellness]

Hands-down the most interesting video on sleep I have seen. What helps me sleep is a hot water bottle down at my feet under the covers.. And I have to wonder if you had love in your life when you beat CFS. Many people who achieved success in something, did it w love/support in their life, but they tend not to give any credit to that.

[@RaelanAgle]

Oh that's so great to hear, Donovan! Thanks for that 😊 And I've never heard of the hot water bottle trick - I think that might help me as well because my feet tend to be cold sometimes. And you are so right about the impact of having love and support on healing. SUCH a great point! And so true - often this gets zero credit. For me, having love and support absolutely made a huge difference. Even just living with someone did because I think the loneliness that can sometimes come for sick people who live alone can be so toxic. Excellent points, Donovan.

[@amym3337]

I totally agree. I noticed that in Raelan’s book.

[@LoobyLoo71]

Omg. I sleep separate from my husband also. I can’t. Can’t do it. And it’s permanent. You feel like everyone would think you have no intimacy. But you know my husband quite enjoyed his own sleeping space too

[@RaelanAgle]

I think this is a much more common arrangement than we realize! Thanks for sharing - helps normalize this for the rest of us 😊

[@peachesmcgee4795]

We do too!

[@m.e.myselfandi5120]

Sleep at all costs. Love it!!! So much competes. Valid things. But sleep trumps all!

[@RaelanAgle]

Yes!! Right? Without it everything just seems to fall apart. Thanks as aways for sharing your thoughts and experiences with this!

[@aotearoaalice]

Thanks so much for making all these videos, Raelan! 🙌🙌 . I am currently housebound with fatigue after contracting COVID back in mid-March. My doctor thinks it's most likely post-viral and I am determined not to let it settle in! Your videos and book, which I am working through at the moment, have been so helpful. I love your honesty and hopefulness! It gives me confidence this can be beaten! 💪💪 . Well done getting there and now helping so many others through your experiences. 🧡

[@RaelanAgle]

Hi Alice! I'm so sorry to hear that you've had to face not only COVID but also now these post-viral symptoms as well. That sounds like a lot to manage and I hope you are doing ok. I'm sure it's not always easy (to put it mildly) but its great to see your motivation and positive attitude towards all of this. I'm sure that will serve you well! And thank you so much for taking the time to share a bit of your experience and to send some support and kindness my way. And I'm thrilled to hear that you are enjoying my book! I am wishing you ALL the best with this and if there's ever any way I can help please don't hesitate to reach out ❤️

[@jennamartin-payne1653]

The most important thing I wish I knew when I first got sick is don't push yourself. I carried on as if it wasn't happening and made myself worse and worse. A stitch in time saves 9 as they say! X

[@matthewgarland6542]

Same here, Alice! Both myself and my girlfriend struggling with post-viral syndrome/fatigue since COVID in March. I've only just found this channel but it seems a great resource. Thank you, Raelan, and I hope you recover soon, Alice!

[@ceciliamac4283]

How are you feeling now Alice? I hope much better!! 🍀🤍

[@kathystoner5239]

Great tips! I love the idea of journaling a little bit before going to bed. I need to be better about getting to bed earlier. I love taking hot baths before bed and if I do wake up in the middle of the night, I take another hot bath and it helps me to be able to go back to sleep. I should also try a short meditation. Thanks for saying that about your husband. My husband and I have slept apart for years because he snores so loud. He recently got a sleep apnea machine which helps, but I still can't have him sleep with me as it bothers me, when I cant sleep. I felt badly about it, but he's so understanding. My sleep is so important. We have a great marriage and have been married for 31 yrs. I do take a sleep medication and have for a few years. I don't feel too bad about it, as I have had to do what I need to do to sleep. Although some nights I still get a little insomnia. Food makes a difference. For me if I eat dark chocolate before bed, that can cause insomnia. Also if I haven't eaten enough calories throughout the day.

[@RaelanAgle]

Wow Kathy, we sound like we've had quite similar experiences. It's strange how sometimes I can feel like I'm the only person on the planet doing some of these things (like getting up in the middle of the night to take hot baths!) when of course I totally am not. It seems that we've come to a lot of the same conclusions and found very similar solutions. Getting consistent good quality sleep really can be quite the challenge, can't it. Oh and dark chocolate is terrible for me too! But thankfully only in the evening, because I do love to indulge in some from time to time during the day 😋 Thank you so much Kathy for sharing all of this. I feel so much less alone after hearing about this part of your journey ❤️

[@kathystoner5239]

@@RaelanAgle I do like to indulge in a little dark chocolate during the day as well! Thank you for all you do!

[@almaivazquez1679]

You described exactly what I have been suffering since I have been around I were in my mid 30"s. Thc you sooo much, for sharing all this info. on your own experience.! It helped me identify what Drs. haven't been able to find & diagnose me! I can't THC you enough!! You can't imagine how much you have helped me & so many like me that have been suffering, so much, & feeling so low & depressed with such so low quality of life. You have helped us feel we have hope now. THC you, Thc yoou!!!

[@RaelanAgle]

Thank you, Alma, for this kind comment! ❤️

[@AshleyOliviaDaCosta]

It is 1:35am in Atlanta and I can confirm that reading your book doesn’t get me to sleep. It’s too good! I was not expecting such engaging and almost poetic writing! We have so much in common and now I’m fired up and excited and still awake. 😂❤️🥂💯

[@RaelanAgle]

Oh no!! Hahaha I'm so happy you're enjoying it, thanks for this message! Definitely made me smile ❤️

[@WillowTube]

Hi Raelan, I've just discovered your videos while I work through the final steps of my recovery and just wanted to put something else out there for people like me who can't sustain themselves on a plant based diet. Being on a high carb diet most of your food is converted into glucose and will be affecting you along with all the other anti nutrients that plants are full of. Every single one of those will be having an impact on your well being and sleep. A high fat zero carb diet has been the turning point for me and my recovery as it has a lot more BIOAVAILABLE and accessible nutrients than a plant based diet. An animal based zero carb approach is full of the building blocks your body is looking for to repair and maintain brain structure and function along with the mylan sheath around the nerves, the nervous system itself and the neurotransmitters travelling along the pathways. The higher protein intake helps maintain muscle mass which is critical so you don't waste away and your body has the resources to repair an maintain. Once my body and palate adjusted to the 'Carnivore' way the carbs are purged from your system and you will never crave sugar or have to ride the insulin wave again. Being fuelled by fat is pure bliss and is one of the best symptom management tools you can possibly imagine but too many people don't know about it because of the plant based propaganda being pushed by big food. trying to eat white flour for any reason is simply ridiculous once you have adjusted to a meat based diet as it is completely stripped of any nutrients and is highly processed so once your sugar and carb cravings are gone after about 30 days of zero carb you will realise that there's no point in eating something that makes you sick for 5 min of sensory pleasure. Wheat, all grains and seeds are so full of anti nutrients that are extremely detrimental to people suffering from ME/CFS POTS FIBRO and must be completely eliminated from the diet as the trade off for their nutritional value against anti nutrients is simpy not worth it. There is a lot more too mention and nutrition for us and healthy humans is two completely different scenarios and both are filled with nuance but the relief from a zero carb or low carb approach and the level of calm that washes over your body when in ketosis is very a powerful healing mechanism and needs to be experienced to be fully understood. Finally if plant based is working for you now that's great but don't become dogmatic about it, most people experience relief in the beginning because it's a fasting mimicking diet and there's benefits to cutting out entire food groups temporarily but once your body runs out of things like calcium because you don't actually absorb any from things like spinach due to the anti nutrient oxalate your body will pull calcium from your bones and teeth which is why plant based athletes get injured and stay injured. We evolved as humans eating meat and there's no escaping our biology especially when trying to heal.

[@grahamkeil2253]

Thank you again Sometimes I find there is a tipping point that causes or allows me to get up and do things. I was listening to this and then I got out of bed and completed things I should have done many hours earlier. Your help and advice certainly lifts the load. That load being so many people will not tolerate the illness and evaporate.

[@RaelanAgle]

Thanks for sharing, Graham. Sending hugs to you 💛

[@geoffreyhussey]

some of those tips have helped me with trouble sleeping. :)

[@RaelanAgle]

Great to hear! :)

[@m.e.myselfandi5120]

I love all these tips and all have helped me get to a much better place sleep-wise. As mentioned below, an Epsom salt bath is a complete winner for me. I have to go straight to bed afterwards or I fall asleep before whatever I've left undone. A high fat meal a few hours before also helps keep my blood sugar stable through the night. Spicy food will wake me at 1am. Maybe it's connected to India's time zone! ;)

[@RaelanAgle]

These are such great points! I forgot to mention about how eating a dinner that stabilizes my blood sugar helps me as well. I can definitely relate to this one. And so many people find the epson salts helpful as well - it seems I will have to make more use of this!

[@dchulpay100]

Thank you so much for your videos you are amazing just book your book can’t wait to read through it

[@RaelanAgle]

Awesome! Thank you! And I hope you enjoy the book ☺️

[@clairegrace294]

Hi I’m a new subscriber and thank you this was super helpful! I’m finding my biggest problem with sleep atm is getting very anxious that I won’t sleep. Then if I lie there for a while and sleep still isn’t happening just getting more and more worried. I’m trying to switch off my mind and use mindfulness

[@RaelanAgle]

Thanks for subbing, Claire! And so glad you enjoyed this. I still face this sleep issue as well sometimes - the only thing keeping me from sleeping is anxiety around not sleeping. So frustrating! In these moments I find listening to guided mediations for sleep to be helpful. Wishing you all the best with this ☺️

[@areaman7725]

Nice ideas Raelan and agreed about the prescription sleep medications. Too many side effects, and the rebound insomnia was the worst. Very unpleasant. One "middle ground" over the counter option is Melatonin. I find it helpful without the prescription med side effects.

[@RaelanAgle]

This does seem to be a good one for many people and thank you for bringing it up. I've tried taking it a zillion times and it never seems to help me, but so many other people I know swear by it 😊

[@glengraus4529]

Thank you for your videos.

[@RaelanAgle]

Glad you find them helpful, Glen! I appreciate you taking the time to say so. :)

[@janielightly1644]

Another great video Raelan ☺️I resonate a lot with what you suggest here and do quite a few of them I found I sleep better when I came off the opiate pain killer I was prescribed I didn’t realise that the side effects were preventing me from sleeping but once I joined the dots and went through quite a tough time coming off them I started to sleep better, I still have to have a 2 hr afternoon nap everyday but this doesn’t interfere with my sleep at night, I follow a routine pretty similar to yours now although I do go off track sometimes but I can usually pinpoint what caused the sleepless night, I find a general over the counter painkiller helps some nights with sleep depending on pain levels if it is really high then a hot bath with Epsom salts always does the trick. Thank you for sharing your beautiful city with us, it has been pretty windy here in the UK too. 💜

[@RaelanAgle]

Thanks Janie! It's amazing to hear how so many of us (mostly on our own) find our way to the same path, the same strategies and approaches to getting through this. It kind of seems like many of us are forced to keep reinventing the wheel in some ways when it comes to ME/CFS. I'm glad you've found some things that work. I find the same - when I can't sleep I can usually pinpoint the culprit and it helps me learn how to avoid that issue in the future. So much learning! We are experts by now on this stuff aren't we 💜

[@tompearce6312]

It's interesting you mention restless legs. I have ADHD which I think is on the same spectrum. I've read a few things online about how they think there's a link between CFS and ADHD.

[@RaelanAgle]

That's interesting Tom, thanks for sharing that 🙂

[@hernancoronel]

Love your videos, thank you ❤

[@bobbiev7062]

Thanks for the tour of beautiful San Francisco , Raelan! You're a great tour guide, lol! As with you, I need to have a consistent sleep routine. I find a weighted blanket very helpful. It is very calming because it puts my automatic nervous system into a relaxed mode. I can't sleep without it now. It is very good for restless sleep syndrome as well. I also use a Seasonal Affective Disorder lamp during the winter months to compensate for the lack of sunlight. This gives me a little boost of energy on dark days, but is most effective if used on a daily basis. Those can easily be purchased at drugstores. 😎

[@RaelanAgle]

These are awesome tips, Bobbie!! Thanks :)

[@tammygravis1462]

Wow you are amazing thank you

[@wtfhappenedtome]

I don’t mean any offense by this… Just feedback… because I love all your videos. But found I couldn’t watch this one because the background, noise and moving around was too distracting. One thing I really love about your videos how simple and watchable they are, just you at the kitchen table, no distracting unnecessary music or sound effects. Really great stuff.

[@almaivazquez1679]

I had discovered the stretching before going to bed & how Soo much careful I need to be with what I eat that messes up our sleep.. Also, the info about sugar & white flour...thcx

[@RaelanAgle]

Glad this was helpful, Alma 💛

[@EvolverWellness]

My, you are soo sweet! Re pain-killers, many people find CBD helps reduce pain, and reduce anxiety and improve sleep! And that's with no high. I am a CBD educator...seen it help a lot of people. Not everyone though...a few people don't find those benefits. CBD is also neuro-protective. In fact (I am a health blogger for ten years), I have never seen one thing help more people than CBD. It also helps reduce inflammation in conditions like colitis or athritis. Note: some people prefer it w a touch of THC (legal now in most states and a growing list of countries).

[@RaelanAgle]

This really is something that most people don't know much about, isn't it. I did the bulk of my recovery while living in countries where it was illegal (and one of them punishable by death) so it wasn't an option for me. It's fantastic that it is being legalized in so many places because it definitely seems to help a lot of people. And I'm so glad that you are out there teaching people!

[@wifemomlife5606]

Great tips! Would you mind sharing your ear plugs you use? And Eye mask? I have had a hard time finding good ear plugs. Thank you so much. Your channel has been a blessing. I am dealing with major PEM since Covid.

[@RaelanAgle]

Sorry to hear that you're facing this ❤️ I use these earplugs www.amazon.com/Flents-Quiet-Contour-Plugs-Pair/dp/B07HHXGPW6/ref=sr_1_6?dchild=1&keywords=flents+foam+earplugs+nrr+33&qid=1623197467&sr=8-6 (Flents foam NNR 33). As for face masks, I get something that is natural fabric and breathable. I don't have a regular kind, just purchase whatever I can find 😊

[@rsalbatros]

You are so awesome

[@RaelanAgle]

Oh, you're so kind! ❤️

[@marisademore5590]

Hello Raelan. Many thanks for sharing your story :-) Your recovery protocol is very similar to the one I've planned so it's good to hear it worked for you. I plan a vegan regime for 21 days only and then maybe a vegan regime 3 or 4 times annually. After the initial 21 days I hope to switch to a Mediterranean fish based protocol. I need to stay off grains because gluten gives me joint pain so I imagine being grain free as a vegan would be pretty hard to do on a permanent basis, we'll see. Anyway, regarding your sleeping tips, have you heard of Dr Stasha Gominak? She uses Vitamin D3 and Vitamin B's to help treat insomnia. Interestingly, your daily time in the sun will give you Vitamin D3 and your daily fermented food will give you B vitamins because, as you probably know, healthy gut flora produce B vitamins for their own existence and for providing energy for us. I won't go on, suffice to say that if you'd like to check out Dr Gominak, here's a good video to get started: "Vitamin D, Deep sleep & Gut Bacteria w/ Dr. Stasha Gominak". Best wishes to you, Marisa :-) [P.S. A brief history: I've had CFS/ME for 16 years. Had a four year remission by eliminating grains, eating low carb (less than 75g daily) making home made kefir (which supplied probiotics/B vitamins) and juicing tons of carrots daily. Fatigue came back slowly when I went back on gluten free products (bread, pasta, crackers etc). Ended up virtually housebound 2 or 3 years ago. Slowly started recovering this year by using a few supplements recommended by Dr Sarah Myhill and Dr Rich Van Konynenberg's Vitamin B protocol. Energy picked up a notch after introducing high dose vitamin D3 (10,000iu every second day). It went up another notch by taking D-ribose 3g x 3 or 4/d). Not recovered by a long chalk, but not bound bed any more. Yeeaaahh. Hoping for full recovery with a dietary/IF protocol. Best wishes to all you ME/CFS'ers.]

[@RaelanAgle]

Hi Marisa! Nice to hear from you and thanks so much for taking the time to explain some of your story and experience with recovery. I'm so glad to hear that you've had so much success with all of this. And yes- it does sound like there's considerable overlap in our experiences! Thanks for the recommendations as well, I'm curious to check them out and I'm sure all of this you've shared will be helpful for many others as well. All the best to you Marisa for the rest of your recovery journey 🧡

[@marisademore5590]

@@RaelanAgle Thank you. Christian love and hugs xx (don't know how to get the little heart up or I'd send one back to you!)

[@lianpeet3502]

Thanks Marissa, very interesting information!! all the best with your recovery journey and God bless x

[@michaelfritz403]

thanks for the video. But how can this be reconciled with everyday life, or rather with spontaneous life? notice yourself you can easily become obsessive when it comes to sleep. and if it should be later, do you still get up at the usual time, or do you sleep longer and kill the rhythm? best regards from Germany

[@merekeebertalli]

Hi Raelan, I was wondering with the sugar, do you see any differences with which fruit you eat? With food I find rice just knocks me out and gives me extreme headaches too. Thank you for the video!!

[@caseyj1144]

Humans are suggestive but we vary in our suggestibility and only some things can be moved by it. I imagine the rapid recoveries had already occurred or mostly occurred in the body but mind and habit clouded it so LP helped them uncover or see it. In other words the mind plays a bigger role for some of us than others though it’s likely a portion for all or most of us. Unfortunately if mine were a mind problem I would be better already based on the variety and length of time I’ve done mind work. It made my life better and fully enjoyable but it didn’t cure my physical illnesses including ME

[@timmorgan7694]

Dear Raelen, True to form Facebook blocked me. Two thoughts... One: If you decide to purchase an alkaline water converter I recommend the Leveuk made in Japan. $4000.00 well spent. Thought number two: If you decide to purchase a 1.3 ata mild Hyperbaric Oxygen Chamber the Sumitt To Sea is very good. It kills viruses and retroviruses in the blood and renews bone marrow. I learned this at the Undersea And Hyperbaric Medical Society in 2008. Sincerely, Tim

[@Tiffyshea23]

I love your videos, I find them very helpful. However, the number of ads is a bit over the top ridiculous. I don't mind a couple of ads, but there's a large number on your videos compared to some of the other ones I like to watch.

[@RaelanAgle]

Noted! I was not aware and appreciate you bringing this to my attention. I will look into this ASAP.

[@susank1646]

I didn't see a single ad on this video. But sometimes I will watch a video with tons of ads - it seems really random.

[@lucycarlile9567]

Thanks for the great tips! When you were sick, were you able to read a lot? I find it worsens my symptoms.

[@RaelanAgle]

Hi Lucy! I've been fortunate that for 95% of my time with this illness I've retained my ability to read. I'm so sorry to hear that reading is tough for you. I've definitely heard some others say the same thing, so as I'm sure you know you are not alone in this. Although some people say that eventually this symptom goes away, so hopefully it does for you as well. 💜

[@jennamartin-payne1653]

Lucy I find audio books are really helpful x

[@someoneusa]

Reading is hard for me!

[@k1ghz960]

Dr. Drew says sleep is #1 or very close.

[@roonbooks1418]

Raelen....ask yourself if you needed all these sleeping aids before you got sick? This is why I don't understand why people say they got better. I think the nervous system can recover to a degree but I find most people that say they are recovered, when in fact our systems are damaged and most people have all kinds of restrictions after the initial illness. I've been stuck for 35 yrs. I know I could never return to a full time job, let alone part time...but...I've been in a very bad state for any decades.i do believe the longer one has this, the more damage is done to our systems.i do remain optimistic. I do believe my infection to have been bacterial rather than viral. Still plugging away at the perrin technique which relies on moving the lymph.have a good night sleep y'all 😴

[@davidhodge8509]

Great advice! Thank you! Did you do any specific program or work with a doctor when recovering? I thought I was 90% better but recently pushed it too hard and had a set back. Last night was my first night of poor sleep due to stress over my setback.

[@RaelanAgle]

Oh that's tough David, I really am sorry to hear that. I'm frustrated on your behalf! Setbacks like that really just seem so unfair. The fist couple of years that I was sick I worked closely with an Integrative Medicine doc who had me on a program consisting mostly of cleaning up my life (diet, detoxing, etc.), supporting my mental health, and taking huge doses of supplements (and I did see some improvement). In the end when I finally recovered fully I did it on my own with my own "program" of sorts, doing things that over the years had shown promise but I hadn't fully committed to. It was a TON of hard work, but after a couple years of this I was finally well. Let me know how you make out over this next while and hang in there. I know this can be brutally hard, but not only do you have those boys to think of but you also need to be free of this for yourself as well!

[@davidhodge8509]

Raelan Agle thank you for the insight into your recovery. Yes, it’s very discouraging. I also worked with a great dr and have been on a strict diet, fixed my gut and detoxed. It got me 75% better but still not able to watch/play my kids for multiple days without a set back. I’m starting to put more focus on the emotional side and going to work with the Optimal Health Clinic. Fingers crossed it helps get me the remaining 25% of the way there! Thank you again!

[@RaelanAgle]

@@davidhodge8509 it's amazing how many of us get stuck at that 75% recovered stage. So frustrating. You seem to be working hard at getting the rest of the way there - good for you. That clinic looks like a great resource. I'd be curious to know how it goes. I hope you make it through this last stretch soon!

[@anyasward4556]

@@davidhodge8509 Hi David, I've often debated whether or not to spend a ton of money signing up to the Optimal Health Clinic. I not only have chronic fatigue but a brain injury from a bleed. Brain injuries in themselves cause fatigue, and I'm not sure if mine has been caused by my injured brain or if I have developed a separate illness. Anyhow, I digress, when really all I wanted to find out is have you achieved full recovery, and if so, do you credit the OPH for that?

[@davidhodge144]

@@anyasward4556 I had a first call with the OHC but ended up not using them. I discovered my underlying issue was mold. I recently started aggressively treating that with a dr that follow Neil Nathan's approach and I'm 100% most days... 95% other days. Sorry I can't give any feedback on OHC since I ended up not using them. I wish you all the best! Don't give up and you'll figure it out! Took me 5+ years but finally got there.

[@James-mk8jp]

When you had PEM, did you sleep more than usual or stick to your routine to keep your sleep schedule in tact? Seems like a dilemma

[@RaelanAgle]

For me - I slept more than usual and my routine went out the window. But some others tell me that sticking to the routine helps them a lot 😊

[@misscharmaineX]

Blue light blocking glasses 🤓

[@harrieta6961]

Where do u find these x

[@returnedfrompanama]

Sleeping by yourself when you’re married is the beginning of the end of the relationship.

[@rubybeard944]

Did you go back to eating regular food to some degree, and how long did it take before you knew you could have it back in your life.

[@RaelanAgle]

Hey Ruby! The changes that I've made to my diet for the most part have been permanent. I'm still 95% plant-based, still eat a ton of fermented foods, very little sugar and processed foods, etc. The great thing is that it all feels like regular food to me now. It's a bit shocking actually that I don't miss any of the junk I used to eat. There were things I cut out temporarily (like gluten - for about a year) just to see if it would help, and the things that I removed from my diet that I learned don't seem to be causing me problems I brought back in. I also completely removed caffeine and alcohol for much of my time when I was working on recovery, but now have these things in small quantities. Once I felt fully recovered I felt safe bringing these things back in. Hope that helps!

[@rubybeard944]

I was diagnosed with fibromyalgia do you feel that this is similar to me everything I have read said me chronic fatigue syndrome and fibromyalgia are the same there's so much out there I just don't know are they the same thank you

[@RaelanAgle]

@@rubybeard944 It can be so confusing, can't it Ruby? I definitely empathize. I was never diagnosed with fibromyalgia but as I understand it the two conditions (FM and ME/CFS) overlap a lot. I (thankfully) did not have chronic pain to deal with (aside from headaches and some body aches), and as I understand it that is a hallmark symptom of FM. Hope that helps and that you find all your answers soon. 💛

[@rvbball1]

I'm curious, you said that you are healed but you are speaking in the present tense. Are you still not able to watch action movies and eat pasta or sugar?

[@RaelanAgle]

I'm healed! But stress and poor diet still affect my sleep :)

[@shubathomas8237]

Did you ever wake up due to hot flushes during the night?

[@RaelanAgle]

Hey Shuba - no this wasn't something that I've personally experienced. Sorry to hear that you have this to deal with 💛

[@youknowcrimedontpay9257]

Yes this is a common symptom of ME/CFS/ Fibromyalgia. There are many many more.

[@kviklunsj1953]

Did you ever try melatonin?

[@RaelanAgle]

Oh, good one! I meant to mention that actually so thank you for bringing it up. I know melatonin works for lot of people but unfortunately it doesn't help me at all. Does it work for you?

[@ragdollrose2687]

Melatonin helped me for a while and then just stopped working. Most of the time, I just have the WEIRDEST dreams and I wake up super tense. Valerian root does something similar, but I prefer it cause it's more relaxing than melatonin for me. However, everybody responds differently to supplements and plants.

[@suzannejohnson3335]

@@ragdollrose2687 melatonin helped me a while then stopped helping and gave me a bad hang over feeling. also strange dreams.

[@youknowcrimedontpay9257]

If you can achieve deep restorative sleep Slow Wave Delta sleep you do not have ME/ CFS or Fibromyalgia. That's a fact so you may start looking at other issues like lyme disease etc..

[@ishheredia9626]

Which criteria uses this standard to rule out CFS?

[@youknowcrimedontpay9257]

@@ishheredia9626 Myalgic Encephalomyelitis aka CFS, which is really FM, or now more known as central sensitization, the entire central nervous system becomes sensitized to certain stimuli. Central sensitization is considered by many experts to be a key mechanism behind fibromyalgia. Central sensitization may also be involved in certain aspects of chronic fatigue syndrome. www.cdc.gov/me-cfs/about/index.html www.verywellhealth.com/central-sensitization-715859

[@anna-marieeasmus7529]

As I understand Lymes disease and viruses like epstein barr / mono and corona is one of the root causes of fibromyalgia / cfs / me. Because the chronic painful symptoms of these illnesses cause trauma in our bodies we then develop maladaptive stress response or sentral sensitization syndrome etc. According to Dr. Teitelbaum (a physician and researcher on Cfs) cfs is a name for the symptoms and different people have different causes that bring on these symptoms. Infections is one of the major causes.

[@youknowcrimedontpay9257]

@@anna-marieeasmus7529 Not correct at all. First off is this Dr. Jacob Teitelbaum who sell the snake oil S.H.I.N.E? The same guy that moved to Hawaii with all the money he made from selling the snake oil to people who are suffering?The guy who claims he himself has FM? If I'm correct he is laughed at by the medical community and only makes assumptions about his thoughts which are not true at all. Most of the illnesses you mention have similar symptoms but are not FM / CFS. You can't cure FM with snake oil and there is no cure to FM / CFS because science does not even know what causes the symptoms never mind how to cure it.

[@anna-marieeasmus7529]

So what you are saying is that anyone who improves their symptoms did not have cfs/fibro/me? I do not know who your advisors are but they have taken a big part of coping with this disease away from you: hope. If I did not have hope of improvement why would I want to live any longer. This is not live. I prefer a positive mindset. I have listened to a variety of experts and they all do think differently than you. Look into Bateman Horne centre. These are all recognized medical professionals that made cfs/me their life mission. I do hope your symptoms improve somewhat and that you eventually heal.

[@Shoot4AlarmFire]

That's funny, I'm the opposite if I read before bed. It absolutely cannot be fiction. I adore reading, and if I like the book, it won't matter if it's action/adventure, or a romance. I won't be able to sleep for thinking about it! Nonfiction is my only hope. And with my difficulty concentrating worsening, nonfiction zones me right out, thought I love that type of reading, too.

[@RaelanAgle]

Ha! That also makes sense. I get really into the non fiction and am barely paying attention with the fiction, which I guess is why I have the opposite!