My Chronic Fatigue Syndrome Recovery Story (4 years to 110% recovered!)
ฝัง
- เผยแพร่เมื่อ 22 พ.ค. 2024
- This is my personal recovery story from chronic fatigue syndrome (CFS)/post-viral syndrome.
You'll learn what changed once I found the right medical team, the physiological interventions that ended up helping, how I approached the "nervous system regulation" side of recovery, and how I stayed motivated throughout my four years of recovery.
SUMMARY:
🥝1. Physical Interventions:
- Mould Illness (treated with activated charcoal)
- Severe Iodine Deficiency (treated with supplementation)
- Gut Healing Protocol (lots of different supplements over many months)
- FODMAP diet (identified intolerance to garlic/onion)
🧘♀️2. Nervous System 'Toolkit':
- Why 'nervous system regulation'?: • What root cause can ex...
- Insight Timer (free meditation app), my go-to meditations for symptom flare-ups:
--- insig.ht/YPTOIszgSCb
--- insig.ht/BhCCzCEgSCb
--- insig.ht/CJ5mErIgSCb
- 1 Giant Mind (free app - 20 minutes morning and afternoon): www.1giantmind.com/learn-to-m...
- Mindfulness meditations in ANS Rewire (40 minutes daily): ansrewire.com/
- Somatic Experiencing (free taster): insig.ht/ZfyWfOFgSCb
- Gut hypnotherapy (6-week course): try.nervaibs.com/
💪3 Motivation Strategies:
- Not breaking the chain: todoist.com/inspiration/dont-...
- Recovery Stories: • Chronic Fatigue Syndro...
- Reaching out to my network
⌚TIMESTAMPS:
0:38 - The non-linear nature of my recovery
1:15 - The '3-factors' needed to crack the code
2:00 - How my CFS diagnosis came about and what the early days were like
2:47 - What symptoms I was experiencing at the time
3:28 - How chronic fatigue affected my work/life
3:42 - My experience with the medical system
4:11 - The Functional Medicine Approach and supplementation
5:02 - How I found the right medical team
5:44 - Melbourne Functional Medicine and how their approach to CFS
6:32 - What they discovered and interventions that helped
07:58 - My Nervous System 'Toolkit'/Resources
12:22 - The 3 key factors that helped me stay motivated
15:33 - My health and energy levels today
💻EXTRA LINKS:
ANS Rewire by Dan Neuffer: ansrewire.com/
Honor Eastly: Big Feels Club Podcast Episode on Chronic Fatigue: open.spotify.com/episode/0viw...
Big Feels Club: www.bigfeels.club/
Kristin Dainis Book "When Doctors Say You're Fine" (download first three chapters for free): kristindainis.com/
Irene Lyon TH-cam Channel: / @irenelyon
Melbourne Functional Medicine: mfm.au/
👀WHAT TO WATCH NEXT
Quick Vagus Nerve Relaxation Exercise | Lorraine Pentello - • Quick Vagus Nerve Rela...
🩺MEDICAL DISCLAIMER:
This video is for informational purposes only, it is not intended to substitute diagnosis, treatment, or advice from your medical professionals.
⚡AFFILIATE DISCLAIMER
I am not an affiliate for any of the resources mentioned in the video. - แนวปฏิบัติและการใช้ชีวิต
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![คบซ้อน - วงL.กฮ. [ Official MV ]](http://i.ytimg.com/vi/5MtesqJ0I1c/mqdefault.jpg)
⌚TIMESTAMPS:
0:38 - The non-linear nature of my recovery
1:15 - The '3-factors' needed to crack the code
2:00 - How my CFS diagnosis came about and what the early days were like
2:47 - What symptoms I was experiencing at the time
3:28 - How chronic fatigue affected my work/life
3:42 - My experience with the medical system
4:11 - The Functional Medicine Approach and supplementation
5:02 - How I found the right medical team
5:44 - Melbourne Functional Medicine and how their approach to CFS
6:32 - What they discovered and interventions that helped
07:58 - My Nervous System 'Toolkit'/Resources
12:22 - The 3 key factors that helped me stay motivated
15:33 - My health and energy levels today
Wishing you the best on you're recovery journey
Thank you Aron!
Thank you for your story, i also listen constantly to recovery stories and dont believe anyone who says you cant get out of this, it is possible, thank you 🙏❤
I've been hearing so many of these stories over the past 3 years from people in support groups that have had Long Covid. Chronic fatigue is still not so well understood and even accepted by much of population. I had Covid in June 2020, well before vaccines or even a lot of knowledge about what Covid could lead to. It led to chronic fatigue that took me 12 months to get over. I couldn't work at all for 6 mths then light duties for another 6 before a full return. For me I had to learn to pace myself and rest as much as I could. If I overdid it there would be a delayed price to pay. Also I went on a diet similar to an anti-ageing diet. Lots of healthy foods and cut out the crap. I think it all helped but I wasted 3 months initially because everytime I'd feel a little better I'd do too much and then I'd set myself back.
I'm good now but know many, including many young people, that are still struggling. I'm glad you're well but what a long ordeal for you. All the best.
Hi Hiram, thanks so much for your comment and sharing your personal story with CFS. It definitely is a multi faceted approach and you have to listen in to your body and rest as much as you can. So pleased to hear that you are also feeling better. All the best for your continued health!
I’m a long covider too for two years now the flare ups are the worse
Did U ask a doctor about hormones imbalances, effecting moodiness.??????
Thanks SO much!!!
Hi Victoria! Congrats on sharing your incredible journey. We discovered you during my husbands prostate ordeal 2 years ago, totally unaware of your own health struggles. We have told so many people about your website. But when I saw this video, I too can agree with most of what you described, as I have had that roller coaster of not knowing what started all my mystery ailments, and battling with the brain fog,fatigue, loss of motivation and confidence. I agree, without counselling, sharing stories, seeking support, and ,as hard as it feels, being kind to yourself, when at times just as you improve, you can crash and wonder if this is how it will be forever. And it is never one answer, or one person to fix it all. Music, Meditation and Nature have been a big part of the recovery too. You are an incredible person Victoria, thanks again, and keep believing.Be kind to yourself. ❤Marie n Dom
Hi Marie and Dom, thank you for your kind and thoughtful message. And for sharing your own rollercoaster journey on your road to health and recovery. I am so pleased my story resonated especially how important a holistic approach to health and mental health. As you said, it often takes a combination of approaches. I love your suggestions of music, meditation and nature and I couldn't agree more with you!
OMG Victoria. To think that I had my RRP in December 2020, right in the middle of your own crisis, spins my head. You still found time to listen, advise and be there. You are one amazing woman. I’m so pleased you are at 110%. Stay healthy and keep up being the legend you are in men’s health. I have a few people I can share this CFS journey with. Thank you for posting.❤ and welcome back! 🎉
Hi Jonesy thanks so much for your thoughtful message and well wishes! I'm so pleased I was able to help you back in 2020 when you were in the midst of your recovery. Your kind words mean so much. Appreciate you sharing this with others and for spreading the word!
Well Done, great job!
❤Thank you so much for bringing hope .God bless you ❤
Perfect description and strategy. Thanks so much.
Hi there, thanks for your comment, glad you found it helpful!!
many thanks for your honest personal story. So glad to hear youn are 110%
Hi Tony thanks for your thoughtful message and well wishes!
So pleased your better you were a great help for me in my journey 😊
Hi there thanks so much for your comment! So pleased to hear I had a positive impact on your journey. It sure feels great to be feeling better!
Hi Victoria, What can I say but a big thank you for carrying on the A Touchy Subject work whilst you weren't on top of the world, just amazing. I'll be passing on this info to a friend who's daughter is suffering a similar health issue. Stay well. :)
So very pleased you have fully recovered and remain an inspiration as you continued to enlighten us all with your videos.
Hi thanks for your thoughtful message and well wishes! So pleased to hear I have inspired and enlightend you on your journey!
Dear Victoria,
Thanks so much for generously and vulnerably sharing your CFS recovery story with us all. It is sadly a very common story however I'm sure that your insightful reflections and resources will change lives and that you will now impact a much broader audience than those with prostate cancer and the people that support them.
Your story resonated with me on so many levels - as I support people in my capacity as a Pelvic Health Physio with similar chronic illness stories. It always always takes an approach that addresses the physiological / biological that includes nervous system regulation, a committed multi-disciplinary team with expertise in the area, tools (and people) that support you to stay motivated and most importantly the person themselves having a degree of autonomy, self efficacy and self-compassion.
I am SO PLEASED that you now feel 110% and can return to doing what you love, we are all grateful for that. I look forward to sharing more about our professional passions. Shan
Hi Shan, thank you so much for your comment! I'm so glad it resonated, and I love hearing that this is a similar approach you take in your practice, I'm not surprised given the positive feedback I always hear from men in the audience who see you during their rehab (for any Melbourne based people reading, Shan and her team are fantastic physiotherapists!)
It is so wonderful to hear that you finally feel better - truly better. And typical Victoria, you have generously shared your experience in the hope of helping others. Congratulations and hallelujah. Welcome back to full life again. Love and hugs, Fiona & Alan. xxx💖
Hi Fiona and Alan, thank you so much for your kind message! You've shown me a lot of support and encouragement during this turbulent life chapter, I'm very grateful. It's so great to be on the other side and able to share my story to hopefully help others ❤
Thank you so much for sharing your story -- it really helps those of us still working to get to 100% (or 110%!).
Hi Sarah, you are welcome, happy to help and all the best for your recovery journey to 110%!
Glad to hear that you're doing so much better. I've sort of given up on my prostate recovery, but this video has encouraged me to keep trying. After three years, I figured that there's nothing left to do.
Hi George, thank you so much for your comment. I'm so pleased that it has inspired and encouraged you to keep going! All the best on your continued recovery journey.
Well done you. So happy for you that you have made a full recovery. I have known a number of people with CFS and it's so hard for them. I like your approach that you have outlined in this video, I will share it, and I hope it will help others with CFS and Long COVID. All the very best.
Hi Pete thanks so much for your thoughtful message and well wishes. So glad you found this video valuable. I appreciate you spreading the word! All the best
Thank you very much for all the information, support and assistance you provide to men recovering from PCa treatment. And very happy to hear that you have found success dealing with your CF, it’s not an easy journey especially when confronted with the fragmented allopathic approach to ‘invisible’ illnesses. All the best !
Hi Socrates thank you for your thoughtful comment and well wishes! So pleased to have been a source of support for you on your rehabilitation journey. The allopathic approach sure comes with it's challenges and so pleased to be out the other side now.
Dear Victoria, thank you for all you have done for me in my post-prostate cancer recovery; All of the time that you were advising me and providing all those wonderful videos I did not realize what you were going through and am very thankful that you have now restored your health and feel so good again! You certainly deserve a blessed life!
Hello, thank you so much for your thoughtful comment and your well wishes!! Wish you the best!
Thank you! That’s inspired me xx
Hi there! So pleased that this inspired you! :) All the best for your recovery!
Really inspiring story, glad I stumbled across this. I am 3 years into long covid and have seen real progress but have had some setbacks.
The emotional component is the hardest for me but it’s what I know to be most important.
Interesting to hear your perspective on diet etc- I was so ridiculously healthy pre long covid I didn’t have any areas to improve. I even did gut microbiome testing which showed it got worse even with the perfect diet and expensive supplements and only improved after doing emotional work… crazy.
Somatic experiencing has been key for me and like you, the fatigue and brain fog are my main symptoms now. Everyone’s nervous system is so different so it’s a lonely journey but recovery stories are fuel for the ride
Hi James, thank you so much for your comment and sharing your journey. Absolutely agree, it really is a multi-faceted approach and emotional/body work is so key! We are all so different and each and everybody's recovery journey may also look different. I am really pleased to hear that my story has helped you in some way. All the best for your continued recovery.
What a great video. Thank you so much for making it. I have CFS. The general trajectory is in the wrong direction but I have just put myself into un-tensive care and I fully expect to recover. IEspecially since watching your video. Thank you.
Hi Warren,
Thank you for your message. So pleased to hear that you've found this valuable. Wish you all the very best for your full recovery!
You are an angel. Thank you so much for creating this video. I feel bubbled up and overwhelmed with hope and possibility- I could cry. haha well let's be real, I am crying.
I think the nervous system regulation is one of the most monumental takeaways here. I imagine so many of the ME/CFS stories are those of people that have been living their lives in high stress/grief/heightened emotions/intensity/etc...often times coupled with a series of physical illnesses. But it makes sense that the body one day just says enough is enough. You can't keep operating in this fight or flight system, so the body gives us no choice but to stop with all the onset of CFS symptoms.
I thank you again for taking the time to spread your light and positivity and hope. I will check out some of the resources you mentioned, and am making my new focus of 2024 nervous system cool down. Sending you warmth and continued strength through your healing journey!
Thank you so much for your beautiful comment, Hannah! I'm so happy to hear that my story and reflections have helped you feel motivated to focus on nervous system regulation this year. Sending you lots of calm and ease 🙏
Hi Victoria--I just came across your video and was so pleased to see you mention CFS Unraveled--I feel like Dan's program truly saved my life! I'm still in recovery but I've come a long long way from where I was before...cheers to you!💖💖💖
Hi Karen! So pleased you came across this resource too and so glad that CFS Unraveled made such a positive impact on your healing journey too. All the best for your recovery!! 💖
Wow Victoria what an awesome story to share - not only because of how many wonderful tools and skills you developed (your 'body code' is brilliant), but also importantly because you understand how hopeless it can feel when crushed by a chronic illness and this is a purely HOPE FULL message. It's been a real privilege to support you and we couldn't be happier at your 110% health status! Your coach, Bee
THANK YOU BEE!! You were such an integral part of my team in that final recovery chapter 💪 I will forever be grateful for your empathy and rock solid support during that time 🙏
It was my absolute pleasure and I'm thrilled for you@@ATouchySubject
Thankyou so much. You packed in alot of info there. You look and sound so happy. You are such an amazing person. I pray to God your hearts desires come true..turn to God and thank him for your recovery, appreciate everyday. I am still battling...
Is Esther, thank you so much for your well wishes! I really appreciate your message. I wish you all the very best for a speedy recovery
Hi Victoria, I have enjoyed your posts. I went through your last one with interest, I have experienced some problems with my recovery having 2 back operations after Prostate surgery and recently had a setback with nerve damage and needing more treatment, I have put a lot of my problems to this damage not getting full control and sometimes getting worse. I do plenty of exercise to keep it the best I can expect, there now seems that Ablation of nerves may be my future. Thanks for all your help, I will keep looking at any posts. I guess at 78 I’m going ok.
Hi Tony thank you for your message and for sharing your recovery journey. I'm sorry to hear of your recent setback. I hope my posts continue to provide hope and inspiration. Wish you all the best on your recovery journey.
great video. recovery feels like climbing mount everest, constantly slide 10 steps backwards. i still struggle to believe that ill make it. but i wont give up !
Hi Shauna, I completely understand what you are saying here, it really is a rollercoaster ride. Hope you found some valuable insights in this video to help you. All the best for your recovery!
Glad you are feeling better , sounds a lot like my post prostate cancer journey 4 years and still working at the side effects 😬
Hi Wes, thanks so much for your comment and well wishes. I am so pleased it resonated, all the best for your continued recovery 😊
Same story as mine , glad that you recover from it. I'm still struggling with energy sometimes, by the way. 😊
Hi there, thanks for your comment. So pleased to hear that this story was relatable and hope it gave you some valuable tips for your own recovery journey. Sorry to hear that you are still struggling with your energy, we wish you all the very best on your ongoing healing and recovery!
It's interesting that you say you experienced CFS after having a virus. I am convinced that my onset of CFS happened after I was diagnosed with mononucleosis. I recovered from that, but from that time onward, I would get bouts of never ending fatigue, aches, pains, headaches, like when I had mono. I wish we could understand the cause better. I've lived with it for over 40 years. I've managed by jealously guarding my time devoted to sleep and rest. Not a cure, but how I've adapted.
Thank you for sharing I am so proud of you and happy for you! I am struggling now but it’s stories like yours that give me hope!💕 May I ask how you were able to know how much activity to do/how to listen to your body and rest vs push yourself a little? I relate to you a lot where sometimes I feel worse or better and have no idea why!
Hi thanks so much for your comment and reaching out!
I really struggled with this too and got better at listening to my body the more I did nervous system regulation activities such as meditation and got to the point where I would only do something if I had a lot of capacity. I also worked with some exercise physiologists to get a handle on pacing. What I found helpful was lots of stretching and yin yoga, moving my body in a way without pushing it too much.
You might like to check out the following link - Kristin Danis has some videos on this topic.
youtube.com/@kristindainis?si=ZE7ztWSD7F-Z2n7z
I hope this helps and wish you all the best for your recovery! 💕
So glad to hear your story and see that you recovered, because you and your work are a gift. Question: You mentioned nervous system regulation. Without getting into specifics, did you experience childhood trauma of any kind (since that is so often a source of nervous system dysregulation)?
Hello Jim, that's an excellent question, something that I'm now grateful CFS forced my hand in doing was looking back at stress/trauma in early childhood (with the support of a trauma informed therapist). I feel that integrating those aspects certainly helped with nervous system regulation, and mopping up that kind of background stress along the way has definitely led to a calmer life now regardless of whatever impact it had on recovery! For anyone reading this particularly interested in addressing trauma, I found somatic experience practices, inner child healing hypnotherapy (via an online program called To Be Magnetic), and self compassion based mindfulness helpful. The book "the body keeps the score" is also an excellent starting point.
@@ATouchySubject Hi Victoria. I have a pretty significant history of both physical and emotional trauma. Over the past year, I've had some of the most incredible movement through my mental healing journey with a type of therapy called IFS. It's broadened my emotional capacity, self awareness, and both self communication and interpersonal communication in incredible ways. I'm so grateful for it.
I'm now in the 3rd month of CFS symptoms, and have been conflicted on whether I should continue therapy work right now because it can sometimes be very emotionally demanding, but at the same time, I feel strongly that this specific therapy is also helpful in regulating my emotional states and ultimately my nervous system because I'm fine tuning being in touch with all my needs. That was a long intro, but my question is, were you working through SE/trauma informed therapy in the midst of your CFS symptoms? And if so, did you feel like it made your symptoms flare up more? Or was it manageable?
Hi Victoria, thanks for sharing. As I am using Activated Charcoal to treat mould and Chronic Inflammatory Response Syndrome (CIRS), I wondered how you used it? I am using 1/2 tspn 1 hr before meals and the same 2 hrs after. Will try once or twice a day initially, then maybe three times. Many thanks Kevin
Thankyou again
Hi Martin you are welcome!
Dear Victoria,
Thanks for all the information about ED and sharing all of the details and relational suggestions for couples on enjoying intimacy again . My Physical Therapist suggested you. Thank you again
Be well and God Bless you .
Hi there thanks for your message, I am so pleased to hear that you are enjoying and finding our resources valuable. All the best on your recovery journey!
Great video, so grateful.
Are there any specific recovery stories that helped you the most ?
Hi there Ace, so pleased you found this video helpful on your CFS journey!
Here is the YT video playlist of recovery stories: Recovery Stories: th-cam.com/play/PLYGv2houTixnrfxc1uvVbfbcTWhSNz4vq.html
Thanks very much
Hi Chris. You are welcome!
Hey Victoria! Thank you SO much for telling us about your journey! I am now 3 months in my symptoms and I would say that the worst part for me is the brain fog. Unfortunately, I sometimes don't know how to even begin my journey (especially when it comes to the crucial part of meditation and "rewiring" the nervous system), because my fuzzy brain won't really allow me to go very deep into the procedures. Do you have any tips for this? You mentioned that you also struggled with brain fog - how did you go about this?
Hi there, brain fog was a really difficult symptom. sometimes the nervous system regulation practices would help a little but, luckily it cleared up for me over time. Wish you all the best on your recovery!
This sound similar to my situation. Came down with CFS in Aug 2018. Still have it although my condition has improved a lot. Could use the extra help though.
How was your protocol with activated charcoal? I also have mold issues at home. Thank you so much.
Hi there, thanks for your questions, Victoria's activated charcoal protocol for mould was tailored to her alongside supplements to support me going through that process. Her team at Melbourne Functional Medical clinic tailored this for her. The process took a few weeks and she undertook it once she was in a mould free environment.
The biggest tool to recovery is not listen to weak people who say it’s not possible to recover loo
Yes! Thanks for sharing your insights! Wish you all the best on your recovery journey.
Hi do you reccomend any particular practitioner at the Melbourne functional Medicine
Hi, can you please give me the name of the meditations in Insight Timer app? De link doens't work for me. I do have the app yet. Thank you
Hi there, thanks for your comment. I would recommend getting the insight timer app, then clicking on these links using the TH-cam app. That way they will link between the apps and it should open the meditation. I hope this helps.
How did they find the mold and iodine deficiency??
Hi Murphy, both were urine samples, my functional medical team sent me the tests. They also included a "visual contrast sensitivity test" for mould detection.
@@ATouchySubject oh like the Shoemaker Protocol VCS??
Thanks! I wonder if they work with people from the states or have recommendations for providers
Did u had panic attacks at night, light sound sensitivity, maigraine heart palpation
Hi there, thanks for your comment, no I didn't experience these types of symptoms, I think that it can vary for each individual. We wish you all the best on your healing journey.
Do you have hypomobility i have cfs 26 years fybromyalgia 6 which for me same thing different interpretations did you have alot if pain
Hi Tom, thanks for your comment. I have heard that that's a really interesting area of research around the connectedness between CFS/fibromyalgia and hypomobility. In my case I didn't have chronic pain or fibromyalgia my main symptoms were PEN, fatigue and brain fog.
@@ATouchySubjectthankyou didn't get reply
I got my symptoms from the HPV vaccine. Same symptoms as ME/CFS and Post Viral Fatigue; Brain fog, blurred vision, anxiety and panic attacks, fatigue, fasciculations, palpitations, shortness of breath, joint pain, food malabsorption and I am sure I am forgetting more. It is so bad that I am considering quitting my job as developer, I simply can't do it anymore, I can't concentrate and get very anxious just by sitting and looking at the screen.
I really don't know what to do, I think it's similar to Long Covid but my situation was caused by a vaccine. I wonder if I have chance of recovery.
I was in the same situation and finally started to recover after learning about leaky gut and how the gut microbiome is directly linked to the immune system. The vaccine messed up the balance in your microbiome. Research how to heal dysbiosis, basically the regimes that help heal SIBO/IBS/leaky gut etc will help you start on your road to recovery. While some things differ for different people, there are some things that everyone benefits from like excluding all gluten from your diet temporarily to allow your gut to heal. It is key that you understand how the gut is linked so that you can be in tune with your body and figure out how to go from there. For me I realized I had extremely low stomach acid due to overgrowth of bad bacteria in my stomach. It's highly likely that you have the same if you have malabsorption of food. A simple way to help your body to improve digestion is to start drinking apple cider vinegar in water before every meal, you will likely notice an immediate difference and joint pain will improve very quickly, it will take a while for everything else to start healing though.
@@j.a.9085 You were also injured by the HPV vaccine? Which were your symptoms and what exactly you did to heal your gut?
Hi, I got the Epstein-Barr virus 6 months ago at 26 yo, still struggelig a lot with fatigue. Doctor says it is post-viral fatigue syndrome. Hurts to walk, hurts to sit straight, sofa-bound and have had home office from the sofa for 6 months as it only affects my physical body, but I can concentrate pretty well. I would say my symptoms were much more intense in the beginning, but I am still very reduced. That someone who was sick for so long recovered gives me hope. :) I will keep eating healthy, listen to my body and not push too hard, not overthink how long it takes, and try to stay present. Sounds about right? 😌
Hi there, thanks for your comment. We are sorry to hear that you are struggling with fatigue and post-viral syndrome, we hear you and understand the impact this has on both your physical and mental wellbeing. We hope you found some helpful information in this resource and wish you all the very best for your recovery.
The ans meditation sounds like yoga nidra.
So familiar symptoms. U were too smart. U were able to afford treatments. I couldn't work .function..oh grief. R u a people PLEASER ?????