My Chronic Fatigue Syndrome RECOVERY Story - Part 1
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- Äas pĆidĂĄn 28. 06. 2024
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In this video: How I got chronic fatigue syndrome, what that first year of living with CFS ME was like, and the laundry list of treatments that I tried to get well throughout my CFS recovery story. Beating chronic fatigue syndrome was incredibly difficult, but thankfully I eventually did get there!
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My Chronic Fatigue Syndrome Recovery Story - Part 2
Working Out With Chronic Fatigue Syndrome âą Working out with Chron...
Chronic Fatigue Syndrome diet - 5 TIPS for using food to RECOVER âą Chronic Fatigue Syndro...
Coping with Chronic Fatigue Syndrome - how to still LIVE your life! âą Coping with Chronic Fa...
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đ Join my new online course, Lifestyle Pacing: Tools for Optimizing Your Energy and Achieving Your Goals. Get 30 days full free access and learn more about successfully navigating your health recovery journey here đ skl.sh/3vaMQqg
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In this class you'll learn:
- Three powerful strategies for pacing your activities and maximizing your output from whatever usable time and energy you have.
- How to prioritize treatment options and make space for the things that are a good fit for you.
- How to shape your environment and harness the power of habits to get you on an upward trajectory. (And have fun while doing it!)
- How to eliminate energy vampires while simplifying your life and routines.
- How to hack your motivation with tools for keeping yourself on track and continually showing up for yourself - even on the days you don't feel like it.
Thank you for the support and I hope you find these strategies as helpful as I and others have!
Join for free here đskl.sh/3vaMQqg
I completely resonate with your story, I have held back from sharing my 20+ years of torment with ME/CFS. I have now been 10 years free but still count each day as I once went 7 years recovered, I was back at the gym, playing squash & badminton and then I decided to push myself to do a charity walk without appropriate training and came crashing down to being completely bed bound again, it took me 2 years to really recover and then start building myself back up again.
I then went back to University and qualified as a teacher and pushed myself to working 70 hours a week and looking after my family and yes before long I had crashed again!
It was only then that I realised my mindset had to change too and my mental health.
I have now retrained in mental health therapies, and neuroplasticity techniques that worked for me along with nutrition and life balance.
I applaud your journey xx
Joanne, I'm so sorry to hear that you've been dealing with this for so long. I hope you find all your puzzles pieces and can finally put this all behind you soon â€ïž
@@RaelanAgle At 10 years recovered I feel I finally did find the puzzle pieces and my journey very much mirrors your own x
Wow! I've done alot of healing treatments and thought I was the only one but I have to say you've done way more than me. Kudos for taking your healing into your own hands.
Thanks and right back at you!
& now using your experience to help others
You are such a lovely & gentle spirit â€
It's funny to see how we go through the SAME thing. Appreciate your courage to publish the video
I know I'm pretty off topic but do anyone know a good site to stream new movies online?
@Ayden Isaiah i watch on flixzone. Just google for it :)
@Enoch Cannon Yea, I've been watching on FlixZone for since april myself :D
@Enoch Cannon thank you, I went there and it seems like a nice service =) I really appreciate it!!
@Ayden Isaiah no problem xD
Thank you for sharing, I've been suffering from chronic sinus infections that started 4 years ago and in the past 3 months I've had no energy and no idea how to heal. Doctors haven't been able to help me and I've seen so many. It's even draining me to type this. So much of what you said resonates with me. Like i want everyone to stop what they are doing and help me figure this out.
Hi Erin, I'm so sorry to hear that you've had to face these health struggles. It can be traumatic, can't it? Like you've been kidnapped from your regular life and have zero energy to figure out how to get yourself back. I am sending you boatloads of hugs for your recovery journey and I hope you find your answers soon đ·
Hi Erin. So sorry to hear that you are feeling so miserable. I had suffered from sinus infections for years, so I understand how miserable you feel. Antibiotics would help for a period of time, but then I would get another infection. I would lose my voice. I missed a lot of work at the time. My sister's a nurse and suggested that I see an ENT specialist. The ENT diagnosed me with Silent Reflux disease. Following a scope, I was told that I had acid going up to my voice box. Many doctors are unable to recognize this condition. I now take medication, avoid acidic foods and raise the head of my bed. The good news is that I haven't had a sinus infection in over 20 years! I hope this is helpful. Best of luck!
Thank you for sharing so candidly and openly. Your strength and beauty shine through.
Thanks Geoffrey, what a kind thing to say âșïž
Wow, here I am watching all your videos from Sherwood Park for the past several months with absolutely no idea until now that youâre a fellow Edmontonian! What a small world. And when you were listing off all your treatments you had tried I couldnât help but laugh as I had tried almost every one of them! Thank you for your inspiring videos thatâve helped to keep me going. Every day I look at pictures of Lake Louise and tell myself I will one day be healthy enough again to make the road-trip to visit it. Take care Raelan. đšđŠâ„ïž
Thank you for sharing your story. So many people will benefit from watching your videos.
Thanks for watching, Natalia! And that is very kind of you to say â€ïž
Thank you Raelan for so bravely sharing your story and sending out such a powerful message to CFS sufferers myself included, you have given me hope and I pray one day that I too can do the same. Much love đ
I'm so sorry, Janie, that it sounds like you too are facing similar struggles. I really appreciate you taking the time to listen to a bit of my story and send some love and support my way! I am sending it right back to you and also hope and pray for you to find your own path to health very soon. Much love to you đ§Ąđ
Raelan Agle thank you đ
Great to hear someone repeat almost exactly my CFS experience!
Isn't it interesting how many of us share such similar stories? I find it simultaneously comforting and heartbreaking to find so many people that I can relate to (and vice versa). I hope that you too also found what you needed to recover đ
Oh my gosh, thank you so much for sharing all this. You have no idea how much this is helping me, knowing that someone who went through so much of the same as me actually tried all these things that I've wanted to try but not been able to afford. It's been one of the hardest things, knowing there is so much that could potentially help but not being able to try it. I feel like a weight just lifted, like I don't have to do all those things.
Also, I wanted to say that I honor your strength. It's not really expressable how it is to go through this. I appreciate you so much for staying strong and helping others by doing so.
Oh I'm so glad that this was helpful!!! Yay! That really is just wonderful. I was fortunate that I was able to try a lot and I haven't fully appreciated how difficult it could be for others to not be in a place to try things that might help. That does sound incredibly frustrating. There are so many weights on our shoulders with this illness, so I am thrilled that I could help ease that load in some small way. And thank you so much for your kind and supportive words here! I really do appreciate it đ
The funny thing is you donât have to spend a lot of money to get better, all you need is support and KNOWLEDGE! Youâre mind is the most powerful tool !
only just found you but its like listening to my story and journey, and shedding a tear with you as this is so personal and always so private ....always private tears thank you for sharing normal and there is a light x
Hi Susan, I'm sorry to hear that you've had a turbulent journey as well. I'm glad there's some comfort in my videos though and I am sending you love and support for your own recovery đ
This is heartbreaking. I am so happy to see you in full health now and I hope to get to 100% too. I am very grateful for everything you do to help us. You are a wonderful human being.
Your channel gives me such hope â€â€
Hello: This video is pure gold. I just got my ME diagnosis a week ago. Last night I could NOT sleep and fell into a deep depression. I started to disqualify myself from life. I came across this out of desperation. Thank-you for sharing the HOPE. Your honesty is invaluable. I'll be retroactively watching all your videos. Thank-you. đ
tekis0 I'm so sorry to hear that you have been facing this. Sending support and wishing you all the best with your own recovery journey đŒ And I'm so glad you are finding my videos helpful in some way :)
Thank you so much for sharing your story, I totally understand your tears. I am making very slow progress in getting better but any progress at all makes me happy and just seeing how much more I can do now than I could in the beginning gives me hope. I found your channel today so don't know much about you but just hearing in this video that you now go to the gym brings me so much peace, it is so uplifting to know you have recovered to that extent. Sharing your story about such an isolating and debilitating illness is so valuable, thank you!!! xx
Hi Debbie, thanks so much for taking the time to share this and I'm thrilled to hear that you are feeling more hopeful. This can be a long hellish road, so it's understandable to not always feel so optimistic! But things can and do get better for so many people with this illness. I hope you find all your puzzle pieces and get fully past this soon đ
Thank you so much for this video. Your story resonate with me, as I'm years into the struggle.
I'm so sorry to hear that you too are having to spend years of your life dealing with this. But there is something powerful, isn't there, knowing that we are not alone in all of this. Thanks so much for taking a moment to hear a bit of my story and wishing you all the best with your own recovery story đ
Thank you for the courage to share your experience with ME with us. I myself have and still has ME/FM which I treat very much the same as you. It is very hard to find someone, especially in the medical profession, to fully understand the struggles just to get through one day, one month or one year at the time. It is very hard to start a new day with no energy but their is no choice but to get up and be as productive as possible. Your persistence really encouraged me a lot not to give up but to fight this dreaded syndrome by following the same routine as you did to become functional again.
Hi Johannes, thanks so much for taking the time to share a bit of your journey. Wishing you all the best with this đ
Thank you for sharing your experience.
Thank you for the support and for taking the time to listen to a little bit of my story!
Thank you đ
Gosh the constant exercising sounds extreme Raelan! This channel is incredible! Thanks for sharing!
Thank you so much for sharing!
Thank you Lina for taking the time to hear my story!
What an incredible breach of trust, as I see it!, by your doctor. You have the intelligence and personality to deal with it! So much admiration for you!
Thanks for that, Graham! It's such an unfortunate dismissal that far too many of us seem to face.
Thank you for the support and insight given.
Shalom đđŒ
My pleasure Brent, I'm so glad you enjoyed it âșïž
This is so similar to my experience. Thank you for putting into words your experience. Its such a very lonely isolating existence. An absolute living Hell. This video gives me hope. I'm still fighting.
Hey Funky Dancer, I am so sorry to hear that you are facing this right now. An absolute living hell - you have phrased that perfectly. I'm so glad you still have hope and are still fighting and I'm sending you huge healing hugs for your own journey with this đ· I know it can be horrible and I hope you find your way out soon.
Thank you so much for giving me some hope.
Iâm SO glad to hear you have hope! đ
đđŒ for this - I recognise a lot!âŁïž
Thankyou so much for sharing your story. I relate and you give me hope!
You got this, Amy! đđ
Thank you for sharing your story!! I canât believe how much it mirrors my own- Iâm about a year and a half into this and have tried SO many things and have spent SO much money and have been discredited by so many doctors who say âIâm fine!â- I have 3 kids and we also moved to a new state this year, and am literally at the end of my line from mental and physical exhaustion- but your story gave me hope this morning, even though Iâm in the middle of another fluish/achy flare up đ. Iâll be back to hear more!!!
Hey Lisa â€ïž I empathize for sure. Although I can't imagine what this has been like for you with three children! I'm so sorry to hear that you are facing this. Please hang in there! I think perseverance is key - your answers and puzzle pieces are out there âșïž
@@RaelanAgle thank you. It has been hard as a parent. Itâs so challenging to prioritize rest, and the copious amounts of research needed đ (Iâm SO sick of research some days!). And YES I feel like Iâve collected hundreds of puzzle pieces, but no one had shown me the actual picture so I have no idea how to put them them together! I watched the first 4 parts of your story- do you end up revealing what eventually worked for you from a protocol standpoint for healing? My best guess right now is that mold is a factorâŠbut that hasnât been confirmed with any testing at this point.
Great đgood to hear another success story
Thanks, Matt!!
So heartbreaking these stories and so much hope dealing with long Covid. Definitely makes me understand without health you have nothing and every hour now that goes by without symptoms is a treasureâ€
Hello, I found your channel because I'm exhausted not matter what I do and I refuse to live my life like that I can absolutely relate to your story and to be honest you made me cry. There's nothing more horrifying than feeling sick all the time but doctors tell u that there's nothing wrong with u. The loneliness and the emotional pain of going through is indescribable. I can't wait for part two of your healing process and I will subscribe to ur channel for sure!
Hi Barbie, it really is heartbreaking to hear about so many people like yourself that are facing this. It IS indescribable. I still to this day struggle to find the words to adequately explain this all. I really hope that you find what you need to regain your health soon and do what you need to do to take care of yourself mentally/emotionally in the meantime. Sending love and hugs your way, Barbie, and thanks for sharing your feedback on my video. It's a scary thing to put out there but knowing that it might help others feel less alone makes it all completely worth it đđ
Hi Iâm here for the same reason! Iâm struggling so much with this fatigue and sleeping so much it makes no sense. I suffer from depression as well so it has been so difficult to figure out if my fatigue and oversleeping was because of my depression but after some research I now know itâs not my depression but chronic fatigue. It is very sad and difficult for me because Iâm a single mother of 3 (my youngest is 10 but still) and most of the time Iâm sleeping and not able to function or interact with themđą
@@roseg7853 Oh Rose, I'm so sorry to hear this. You are not alone! So, so many people are going through something similar and it really is devastating. And being a single parent of 3 kids of any age sounds like a lot. I really struggled to get through this with NO kids at all. I can really relate to the depression/fatigue connection as well. I hope you have some support and find what you need to start feeling better and getting past this. There's a community here for you! Let us know how we can help â€ïž
Raelan Angel thank you so muchđ
Rose G
I am so heartbroken for you. I hope in the past 5 months you have been able to have more support, hands on and just a lot of encouragement.
I simply cannot imagine how it would be to have this illness and to be a single parent of 3 children.
Long before ME, I was not well during my youngest childâs life when he was a teenager and the youngest of four. I found it so hard to be a normal mom. I know he was embarrassed by my sleeping so much, a messy house and so few meals when he brought his friends over.
I had been the opposite of that for his entire life growing up. I believe it was living through the stress that my daughter was causing us - there are no words to describe her behaviour.
I did mostly recover from that but my husband was there to help me and my 2 oldest boys were not really living at home that much.
What you are going through sounds impossible to me. I will keep you in my prayers and pray that you will be able to work on your recovery and be normal again.
Thank you so much for thisâ€
You're so welcome Poppy!
God bless you Raelan! I guess you hear all of the time what a huge help you are to us! What a HUGE eye-opener all of this is! I have gone through so much of what you are describing, including symptoms and treatments and wasting money by the boatloads. I have found it hard to believe that it is my brain but I have to accept it and do the brain retraining! Thank you! Thank you!
God bless you, Raelan. I love your videos so much. You are such an inspiration. So sorry you had to go through this for so many years. I relate to you so much. I traveled prior to my illness. I was also enrolled in a graduate program. Thank you for such a heartfelt video. You are such an inspiration to so many. Sending love & best wishes...
Thank you so much for all of your support and kindness, Bobbie! I appreciate it so much. I'm heartbroken that you too have had to go through a similarly challenging journey, that being said it is always so nice to connect with people who get it đ
Very powerful account thank you for sharing I can relate to it very much I am going through this right now and hope that I will recover one day too.
You are so welcome!
Thank you very much, you give me hope đžđȘđ dankeschön du gibst mir Hoffnung đ
That's wonderful, Marina! I am sending you hugs and support for your own journey âšđâš
Girlllll our stories are very similar. Thank you so much for this. I'm from Brazil. Here people don't know much about it.
Thank you, Luciana! I appreciate it â€ïžâ€ïž
I'd been toying of making a video on the approaches I've tried to heal from CFS and how gaslighted and invalidated I felt by clinicians - I see you got there first. đ Looking forward to part 2, enjoyed your video a lot xx
I'm so glad you enjoyed the video Steph, and I think that if you're up for it you should definitely make those videos! People need all the support and information they can get â€ïž
I agree! Share your story, too! I think it all helps đ
So I'm glade I came across this video you Explain everything and I'm feeling Exactly how you feeling. Smh fatigue, Cloudy judgement.smh I had a pcp doctor who find something in my stool which I call h. Pylori and I don't think it died or it come back. I'm so done with this fatigue and dizziness.smh I want my old life back. But thanks you for everything.
Iâm crying watching this
sending hugs, Jackie! đđđ
Ah Raelan, this one kept putting tears in my eyes
Hi Katy! I wrote back to you on this and somehow now I can't see my response. You already know how amazing I think you are, how much I appreciate you as a person, and how grateful I am for all of your support. But I want to write this publicly as many places as I can as well! Your comment here is just so kind and such a wonderful thing to see after taking a chance and feeling quite vulnerable while sharing my story. THANK YOU!! â€ïž
What is the difference between CFS and major depression?
@@mayankbitsful I don't know much unfortunately about the diagnostic criteria of major depression, but I do know a few online sources that state the diagnostic criteria for CFS. I can share these here and perhaps if you read through the symptom lists it might help clarify things? I can definitely appreciate how this can be confusing! It sounds like there is definitely some overlap between the two.
Here are a few for CFS:
Canadian Case Definition me-pedia.org/wiki/Canadian_Consensus_Criteria
Myalgic encephalomyelitis international consensus criteria: www.me-pedia.org/wiki/International_Consensus_Criteria
Oxford criteria: www.me-pedia.org/wiki/Oxford_criteria
Fukuda (or CDC) criteria: me-pedia.org/wiki/Fukuda_criteria
Great Intro!
Thanks!!
Hi Raelan,
I am also from Edmonton. ( I think you may be the same age as my oldest child, Marcel. He will be 42 tomorrow. )
Anyway, l have never heard you ME/CFS story; only about your recovery.
It was a shock to hear what you ( and probably so many others ) have had to go though.
My story is very different, so I find it terribly sad and heartbreaking to hear your story. I had no idea it was that bad - and it was very bad.
The shock of having your trusted doctor not believe how ill you are and then refusing a medical form for work must have been devastating. My daughter is 36 and has been diagnosed with Fibromyalgia. You can imagine how difficult it is to get that diagnosis and, on top of that, to have a doctor not only diagnose you, but send away as many forms necessary to get you all the monetary help one is able to qualify for. She has a doctor that has done all that for her and he is at a small clinic in Edmonton. That is astonishing, as I am sure you will agree.
It was hard listening to your story - how hard you worked towards getting better - I was exhausted just listening to all you did; everything you tried ( and you certainly tried everything ), the expensive doctors you saw and all the expensive tests you went through. And with no positive results whatsoever.
Thank you for sharing your story, even if it was difficult for you. And I am sure it was very difficult. It is hard to describe such disappointment and rejection, not being believed and left with no hope.
You are an inspiration to those trying to recover now, like me. But I am glad you shared because you are doing so well and giving so much hope and encouragement to others, it is hard to believe that you went through so much suffering and for so long.
Keep up the good work. It is truly appreciated and very helpful. â€ïž
Hi Pj, it's wonderful to hear from you and the empathy that you've shown me here has given me goosebumps. It's very moving to have a stranger show so much kindness and compassion, so thank you very much for that. And how nice to hear from someone else from Edmonton!
I am so sorry to hear about the struggles that you and your daughter have faced, but I'm glad that your daughter has found a clinic that is supporting her. I am sending you both virtual hugs and support and wishing you all the best with your own journeys đđžđ
Raelan Agle
Thank you so much!
I am 67 and have lived through nightmares with my kids and grandkids. So when I stated going downhill, about 6 years ago, and very slowly, I simply assumed that it was from major stress and kept thinking â Iâll probably be better in a month or so â
One critical difference for me was that I had been a nurse ( originally from Winnipeg - trained at HSC - the teaching facility for the Med Students from the U of M ) where I trained for 2 years and worked for 3 years. Work with interns, residents and incompetent and dangerous doctors ( with some excellent ones thrown in) and you become very jaded and suspicious.
I first noticed something not right when I could not do my ADLâs ( nursing for Activities of Daily Living ).
I have a hard time putting together any sort of a timeline. I had been something of athlete, mostly swimming, but I started to be so exhausted after any activity, I just stopped.
My husband was the one who saw me going downhill. He completely took over. He had seen me work so hard since I was 20, he knew something wasnât right.
After some illnesses ( including shingles ) even I could see myself going downhill. Like you, flat in the couch all day and then sleeping all night, but just exhausted.
I have been on anti depressants since I was 40 as well as Clonazepam for severe anxiety and phobic disorder. Plus I have always had my thyroid levels checked because of a problem from pregnancy. So any reason for exhaustion was pretty much covered.
How did I figure out that I had ME/CFS?
I was from a joke I texted to one of my sons. He asked me how I was doing and I answered â chronically fatigued, as usual.â That was April of 2019.
So just out of curiosity, I looked up â chronic fatigue â.
I was shocked to read about ME/CFS which listed all my strange symptoms.
I researched it as much as possible. I went to my GP, but was dismissed out of hand.
No problem for me. I simply ignored the doctor. I knew that there was NO other reason for my exhaustion.
So now, after understanding all about ME/CFS, researching and now finding out about recovery, I am very encouraged. But I do believe that thinking it was simply stress that kept me from getting too down. Plus, 30 is not 62 and tired of life, lol. Laying down a lot is not really a problem, especially with help. Life itself was exhausting for many years.
My husband supports me in every way, cooking, shopping, cleaning - you name it. Plus making sure I donât overdo things. My daughter is also a support - living with Fibromyalgia.
My kids and grandkids are supportive, but my Mom and 8 siblings are all in denial. No interest, no acknowledgment - nothing. Kind of disappointing, but not surprising if you knew them. I am second oldest of 9 children. 7 of us are all in Winnipeg Beach with 2 others in Winnipeg. My Mom has Dementia and my Dad just died last November, at 89.
But the important people care and that is enough.
Thanks for all that you do. For me, to hear how chronic illness robs people of a normal life is just so sad. I have seen it as a nurse. I just ache when I hear how cruel doctors are - to be dismissed and rejected by the Medical Community is devastating.
@@pjsmith4369 this is quite the journey you've been on PJ - thanks so much for taking the time to share some of your story here. I'm sure others will find that it resonates and find comfort in knowing that they are not alone. I'm so sorry that you've had to go through all of this. Although I imagine it's frustrating and hurtful that your siblings are not understanding, it's wonderful that your husband, kids and grandkids are so supportive. Hang in there and thanks again for sharing this all with us đâš
I just discovered your channel- and Iâm so happy to have found you. Youâre so articulate and easy to listen to. Thank you for telling your story, and for starting this channel. Iâve been struggling for about 15 years. Iâve had a very gradual onset of CFS. I finally found a dr who gave a name to all of my symptoms. I will be watching ALL of your videos. Thank you so much!!
Hey, Molly! First off - I'm SO sorry to hear that you've been facing this and struggling for so long. 15 years is an eternity to be facing all of this hell. I'm glad you've found a doctor who has some idea what's going on! And I'm thrilled that you're enjoying my videos and finding them helpful. Thank you for taking the time to share a bit of your story with us and for sending these kind words my way! Wishing you all the best with this and please reach out at any time đ
Mine was 5 years đą but 15 I cannot imagine.
It took me so long just to figure out how to live right to allow my body to heal.
But once I did, things began to click.
With that in place, and a lot of patience, recovery can and will come đ
My Dear, I sincerely empathize with you. I'm so glad I've found your testimony. My fatigue symptoms began 30 years ago, after having contracted, first...Valley Fever, second...Adult Chicken Pox. Thereafter upon recovery, a couple of times per year, the following symptoms would strike me...first, heart palpitations, then mild flu-like malaise, mild upper respiratory inflammation, mild sinus headache...and then severe fatigue lasting 3-7 days. The "periods" seemed to come and go with the change of seasons. Within the last 4 years the periods are more common, but a year ago after getting a cold from from wife it's rare to have a fatigue-free day. My G.P. just doesn't act. You sound much like me.
I'm so sorry to hear that you've been facing this, Ed đ
I m sick 10 years now like u we all have similar stories
Ahh I was laughing my ass off. The seemingly endless list of things you tried.....seems like someone has sent you an excact copy of my story :D
Thank you so much for your video. This is so similar to my experience, have been fighting through this for the past 6 years. I've tried many of the things you have tried too. Any advice on how to approach family/friends and colleagues about this. I feel exactly the same way as you felt, been struggling for so many years and can't fully convey what this is to other people. Many thanks and hugs
You are so welcome and I'm so glad you found this helpful/relatable. But sad also! I'm sorry that you too have had to face this. And after all these years I still struggle to convey to others what living with this is like. Over the years I developed different strategies for different people and I actually did a video about this. I'll share it here in case you're interested in checking it out and wishing you all the best with this đ
czcams.com/video/UQCiI6uwxfc/video.html
@@RaelanAgle Brilliant! Thank you ever so much for the prompt response. Liked/Subscribed - I may possibly drop you another question later about coping strategies! All the best, Ahmad
đđđđđ This is such an awful way to live. God have mercy!!!!!! This is so me.
Iâm so sorry to hear that youâre facing this. Sending love and support in whatever way I can đ
This resonates so much..you have to live it to understand it..! Thank you for sharing, I am going to catch up with your episodes now..I found you through Visual Soni's Elite Wellness Warriors group on Facebookđ love from the UK xx
You are so welcome, Sue! I'm so glad that this resonates. And that's great that someone has shared this in such a wonderful sounding FB group! Sending huge hugs to you for your own wellness journey đ
This sounds just like me and one of the most frustrating things about it is not knowing and thatâs where I am right now. I just want to get diagnosed so I can get treated. Iâve bought tons of supplements and literally feel like if someone could fix me Iâd pay $10,000. I just canât stand living like this because itâs not living and my kids suffer as a result. I donât know if I have CFS or Lyme or something else.
When i got my diagnosis i refused to accept it. I HATED it and like you i don't use that word loosely. I remember thinking i will be dammed if this illness takes over my life. I am a survivor of severe childhood trauma so i thought if i can get through that i can get through anything. My mindset was if i am already bedridden then the only place to go was UP and better. The thought of missing out on my children's life was a huge motivator i was at the point where i was unable to care for them so in my mind there was no way in hell an illness would keep me away from them. Safe to say for ME (everyone is different) my mindset was a huge factor in my recovery.
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I understand you so well. Iâm so glad youâre well now. Iâm going through what you did now except Iâm wondering if Iâm ever going to make it because Iâm 63. I didnât have a clue I had this. Not a clue. Iâd known nothing about it. I havenât been to all the different drs youâve seen because by the time I realised what it was I was (am bed bound). Or I struggle to get to the toilet.
My hair falls out too. This happened before during heavy stress when I used to cry a lot. I still cry a lot.
Iâve always eaten organic but the food producers lie about content now and of course there are GMOs in everything. I wish I was back in the States so I could talk to you. Or Canada. Apologies if Iâm wrong there. I was also a fitness fanatic as I rode racehorses exercise for a living for many years and worked with polo ponies in Florida every winter for six years and in between either upstate New York, Connecticut, Virginia or Chicago. My amazing life of travel is over. I have no mentor for guidance even though I watch a lot of youâre videos but I need someone to do my shopping who has sense. Organic stores have all gone broke because of this âpandemicâ so I have to wing it and do my best. Love from Annie in Australia.â„ïž
Hey Annie, I am SO sorry to hear about how tough your health journey has been . It's heartbreaking. And I take for granted how quickly I received a diagnosis. I can't imagine what it would be like to go for so long not knowing. I'm sending so much love to you Annie, i hope you find your answers (and a good shopper!) soon â€ïž
Thankyou so so much for replying Raelan. Iâm crying again because of your compassion, but Iâm smiling too.â„ïž
Thank you for sharing your very personal journey
I have suffered from this rotten condition for a few years now
What in my view was particularly upsetting was the lack of authentic support from work colleagues
Being unable to fully cope with work there is no shortage of critics of me at work
Highly suspicious of them and unfortunately added to isolation
One really gets to know oneself
Looking forward to part 2
I'm so sorry Graham to hear that you are going through this. It sounds incredibly challenging to face, and I definitely empathize. But you are so right - one really does get to know oneself! Wishing you all the best with this and thanks for taking a moment to share a bit of your journey đŒ
How did you find the energy to do all these treatments and keep up with all the appointments ?
Oh good lord, I feel like I was watching myself tell my own story.
It's so sad that we all seem to go through such similar experiences
and we have to do it all on our own. I really hope your channel & message
make it out to chronic illness people everywhere. We all need to hear this!
Although I am not fully recovered yet, I have come a long way & feel so much
better now.
Through trial & error I figured out some of the things you talk
about in your other videos that have helped me heal. I would love to share
my story when I'm fully recovered & help other people if I can.
This is the most awful illness to have, I almost wished sometimes that I could
tell people I had cancer or some other well known illness so they could
understand how sick & crappy I felt all the time.
P.s. I have binged almost all your videos in the last 3 days!
Thanks so much for putting this info out into the world:-)
Itâs amazing (and sad) isnât it that so many of us go through the same thing. But Iâm glad that you too are slowly figuring out what works for you and Iâd love to help share your story one day! Just let me know when đ And Iâm so glad to hear my channel has been helpful in some way!
@@RaelanAgle I will certainly do that! I think I may have a unique situation to add that I haven't heard on your channel yet.
I can relate to the Drs. Made me cry listening to you. My first Dr told me it was all in my head. I just sat there crying and when I walked out of his office, I felt so alone. I still do, I've been to a few Drs who just look at me and give me what I want in medication. The Drs think I'm out to just get the medication and I'm med seeking for a high... but i swear it isn't. It's the only thing that works and gives me a somewhat normal day. This medication will eventually kill me at a young age. It's not what I want. To be honest I would rather have 5 more years of feeling awesome with my medicine than to have 40 more years without it.
Totally understandable Judith and I'm so sorry you've gone through this. Many of us unfortunately can relate - you are not alone in this!
I can totally relate to trying most of those things and not seeing any improvements and spending a good deal of money.
It's amazing isn't it, how much of many of our stories overlap? I'm sorry to hear Kathy that you, too, have been going through this. It can be a frustrating and expensive process, can't it. But if the alternative is giving up, then I think that's even worse! I hope you find what you need soon to get past this for good.
So true, I wont give up!
Omg same with me, it started from a serious flu. 5-6 years ago. It was so bad.
Uggh so sorry to hear that đ
Raelan hi my name is sebastian i have me/cfs for around 2 years aldo I had a remission of 5 months last year, now is all back and I'm really scared because for about 3 months I've had a lot of new symptoms, one of them is that I don't have energy in my arms or my legs, so I cannot walk because they start to shake, and in these 3 months nothing have changed I want to ask did you have that symptom? No energy to walk or to raise your hands up, and if so did it last for how long? Thank you I do believe in recovery because my remission but I don't get why it is back, thanks in advance
Hi Sebastian, I am so sorry to hear about this relapse. I imagine that is so frustrating and scary after having been doing so well. Not fair. Personally, I had a stretch (about a year really early on in my illness) where walking 1-2 min was incredibly hard. I felt weak, but I didn't have the shaking that you've described. As I'm sure you've noticed, we all seem to have individual experiences with this though so what one person goes through doesn't necessarily mean that another will experience the same. I really hope this passes for you soon and that you are back in remission soon. Great attitude! Hang in there đ
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i think it s CFS/ME combined with somatic symtom disorder . i m living the same hell . it s been two years
I'm so sorry Ben. It really can be hell, can't it. But you're not alone in this experience, that is for sure! I hope you find what you need to get past it soon.
come to new zealand raelan! your awesome!!!!! x
Aww thanks!!! I would love to Alisha!!
@@RaelanAgle As for getting by with 2 sons (especially with adhd) (god i wish i had it sometimes!:D) its a constant struggle, physically, financially ect, but they give me a reason to keep going on, a reason to get out of bed in the morning and i love them to bits. I am not completely bed bound anymore, more on the same level you were when you went to thailand. I really admire not only the changes you made to get well but your ability to 'stick them out' i make sure i watch a video of yours every day to keep me focused on my recovery journey. The only fear i have is going back to old ways!
Definitely feel you on this. Currently battling through CFS. The brain fog is insane... sad.
I'm sorry to hear that you are facing this because I know what hell it can be. And then when your mind isn't working like it should it can really feel overwhelming. I hope you find what you need to get past this soon đ
Thank you đđ». We were not meant to be controlled by people, diseases, afflictions, or pain. With assistance of the power of the universe ALL things are possible, and there is a new life waiting for us past the hell. Hoping youâre doing fantastic. đ·đ·đ·
It's interesting that you went at getting well like you went at life before getting ill-hard! From what I've researched on cfs and post covid fatigue (which seems very like cfs), those now suffering, all had super busy lives before getting sick-2/3 jobs, college, 6 kids, gym 28 times a week, socialising, etc etc. I'm thinking 'jeez, I'm not surprised your body broke!' I've seen similar with fibromyalgia too, a drive to 'do' rather than 'be' Also the trait of perfectionism. This does apply to me and the belief that my worth is tied up in what I do not who I am, which keeps me constantly busy (or it did until I broke). I obviously know logically, that's crap, but it's a hard one to let go of. Anyway, off to watch part 2. Thank you đ
I know this is an old video but my cfs started after returning from work after a big vacation bender, interesting. Maybe this is a theme?
Wow! Quite the coincidence Nick đ
Can totally relate to trying everything regardless of how crazy incase it works⊠when I went raw vegan I had issues too, it ultimately triggered a cascade of new symptoms inc thyroid issues.
Oh my gosh I had the same with my doctor. I went in 5 times in the 1st month I had all the tests all negative etc and I listed all the strange symptoms I had and she just laughed in my face. I was gob smacked.
I really need ur help ,I just want ur exercise videos to be completed so I can watch them n get out of this mess
I have a playlist on exercise that you might be interested in. Sending you so much support Sony, I hope you find what you need to get past this soon. czcams.com/play/PLNX_MIJ_pJAaFBf3oG_wIALW61VCXQDHz.html
I hear myself in your story đ€
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I have a question... When you have Chronic Fatigue Syndrome, besides the fatigue do you have flu-like symptoms such as body aches constantly?
I am recently over last several months going through this. Went from working 65-75 hrs weekly to not even able to work 20 hrs. I'm on the verge of losing my job. I don't know what to do. It's taking my life a way. Also causing me to be very depressed because it's taking from me.
Christina I'm so sorry to hear that you have been facing this. Sending support and wishing you all the best with your own recovery journey đŒ
Hi Christina, the same happened me, I think mine was like a mental breakdown because I had taken too much on in my life. Working full time over time doing a masters at night, living at home in a tiny room with my sister trying to save for a house and I lost someone very close to me and bang, gone. Couldnât get out of bed or stand. It was horrific. Itâs been three years now and still not back to normal but I can work full time which is very important to me. Do you reckon itâs burnout maybe?
Sorry where is the link for Part 2? There is the link for the working out video but I canât see one before thatâŠ
Hey Amy! It's here: czcams.com/video/GmY6l6hAb-Y/video.html
@@RaelanAgle Thankyou!
Hi how are you doing nowadays, are you fully recovered? I was diagnosed with EBV a year ago cause i was having pain in one tonsil. I never had chronic fatigue until a few days ago. I think its caused by the EBV but i dont understand why until now it decided to give me CFS. Maybe EBV is what causes CFS to most people?
Hey Karl, I'm no expert but from the people I've talked to it does seem to be a theme. I'm symptom-free for some time now thankfully. Wishing you all the best with your own health journey đ
@@RaelanAgle Thats good to hear that you're symptom free, it gives hope for us all that it can be beaten. I think you should go get checked if you have EBV and make a video about it, it would give a clue to other people that they might have it too and be the cause of their CFS.
What is the difference between CFS and major depression?
(as answered above âșïž) I don't know much unfortunately about the diagnostic criteria of major depression, but I do know a few online sources that state the diagnostic criteria for CFS. I can share these here and perhaps if you read through the symptom lists it might help clarify things? I can definitely appreciate how this can be confusing! It sounds like there is definitely some overlap between the two.
Here are a few for CFS:
Canadian Case Definition me-pedia.org/wiki/Canadian_Consensus_Criteria
Myalgic encephalomyelitis international consensus criteria: www.me-pedia.org/wiki/International_Consensus_Criteria
Oxford criteria: www.me-pedia.org/wiki/Oxford_criteria
Fukuda (or CDC) criteria: me-pedia.org/wiki/Fukuda_criteria
Through your whole experience with CFS did you ever found it hard to walk or stand daily?
During my first 1-2 year, yes. I was in bed a lot. Most of the time actually!
My difficulty in standing & walking are focused on Postural Orthostatic Tachycardia Syndrome which is common for ME/CFS. Start monitoring your pulse.
How did you recover ?
I talk about it in detail in a few videos, but this one here gives a fairly quick overview czcams.com/video/AZDNJfiHYKo/video.html
How long were you off work for?
I took a disability leave from work for about 18 months (give or take - it's been a while and I could be off by a couple months). I then went back to work for about 3 weeks and then quit that position completely because I was just too sick and couldn't manage it. From that point it was another couple years before I attempted to work again, and it didn't go so well. I'm about to start a new job this year and if all goes well it will be the first time that I am successfully able to hold down a job with no heath issues impacting me!
wht is IFS
now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.(magnetron)
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
That's very interesting Dirk, thanks for sharing đ
Can I get it in Hindi ?
So finally graded exercise was the missing part of the puzzle for u? am I right?
It was a huge one, yes.
What a shocking betrayal by your doctor Raelan to speak to you that way! In constantly appalled by them!
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I really think you could have put a bit more effort into helping yourself.....đ€đłđ. You remind me of me. I've had chronic health issues for most of my life and had little help from conventional medicine, so was compelled to read as much as I could (and that meant getting on the bus and going to the library-no internet then, lol), trying numerous different diets (raw vegan made my hair fall out too and made me feel like I was dying!), supplements, different therapies etc. I think all that did help a bit (it certainly taught me a lot!) but not completely but then I was diagnosed with fibromyalgia when I was 49 after having years of chronic pain and other symptoms). I'm now dealing with post viral fatigue after covid which is why I ended up here. đ€·ââ
why donât everyone pop modafinil?
I actually tried this and it didn't work well for me. It wasn't healing me, just masking symptoms. But if it's working for you then that is wonderful!
I tried it. Did not help. Now I try Vyvanse and may help a bit. But,of couse, this is not the whole solution
Did whole food plant based help candida die off....did u eat fruit
Cutting out sugar and alcohol seemed to help with candida. But yes I did eat fruit!
How about making a shorter video for us CFS patients.
Hi Esa! Great feedback, I will definitely try. A great thing about CZcams (I'm not sure if you're aware! I wasn't for the longest time) is that you can stop a video part way through and it will remember where you left off for you. It's something that might help with the longer videos out there?
@@RaelanAgle sorry but hat option does not work in everybodys phone. Not your fault. Not my fault. It is poor CZcams application.
@@esasalonen495 Oh no, Esa, I didn't know that! That's really too bad, but thank you so much for letting me know.
Good idea đ
Gosh. I am you. đ
Oh no! I'm sorry to hear you're facing this also Rebecca đ
Iâm really scared I have CFS . I am post viral . I have burning muscles if I walk a bit does that mean I have it ? . I donât have much fatigue in my body just tiredness now & again . I go up & down stairs a bit
Hi Tess, I am so sorry to hear that you are facing this right now and it's understandable for sure that this would be scary. Finding a good doctor will help you figure this out, but it might help to take a look at some of the diagnostic criteria used for CFS to get a better idea.
Here are a couple places you can take a look:
me-pedia.org/wiki/Fukuda_criteria
www.me-pedia.org/wiki/International_Consensus_Criteria
I hope this helps and that you get past whatever this is soon đ
Raelan Agle i donât have many symptoms there . Just the burning muscle now & again did you have that ?
I do have PEM but all off us post viral have that & they getting better
@@tessgirl383 No I didn't have that symptom. It's great to hear that you don't have any other symptoms so hopefully you will be past all this soon!
Raelan Agle itâs so hard to manage ... I canât seem to move forward though . Thatâs why I do think CFS is looming . Itâs good to see recovery stories . However did you get yours after a virus? X
Thank you so much for sharing!
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