Caitlin's CFS and POTS full recovery - a multifaceted approach

New CFS Recovery Programs Guide: healwithliz.com/programs-guide/ Caitlin from Australia shares her journey from post-viral Chronic Fatigue Syndrome and POTS that left her bed-bound then couch-bound, and how she is now in her best health. We talk about rest, nuanced movement specifics, neuroplasticity, diet, having the right support, & more! TIMESTAMPS:
Timestamps:
0:17 Intro: Meet Caitlin
0:38 Caitlin's gradual onset - she didn't bounce back from these 2 viruses
3:48 Pushing through and how she tried to hide it during acting rehearsals
4:50 Health collapse in a foreign land
6:24 Caitlin's functionality levels and key symptoms (see list 7:47 and timeline breakdown 8:17)
8:43 What it was like missing out on life in her early 20s
9:57 Early experience with doctors
10:35 Getting misdiagnosed with THIS
11:11 Why Antidepressents caused this reaction
12:01 Finding a caring doctor with a diagnosis and a plan
12:49 First attempt at physiotherapy and facing her Reality
14:14 What rest ACTUALLY looked like, relying on her support system, and delegating tasks - 15:42 Great quote! So powerful.
17:59 Caitlin's "family" of holistic practitioners - she started with THIS modality
19:02 How an integrative doctor unlocked something that was missing & what supplements she found helpful (23:43 a list)
24:11 We talk about her and my experience with mold and addressing that (information only - not prescriptive)
26:36 Caitlin details her POTS onset (postural orthostatic tachycardia syndrome), POTS symptoms, and wild experience getting diagnosed.
31:52 What she did to help alleviate her POTS symptoms (and the treatment options she said NO to - not medical advice)
33:01 The Catch 22 of having POTS and CFS. The home visit by a physiologist that met her where she was at - she explains what she actually did & how painfully GRADUAL it was when it came to movement / exercise. How she called the shots and adapted things to work for her.
37:19 How her new boyfriend played a positive role & she talks about overcoming anxiety associated with CFS
39:47 Caitlin's opens up about her past and dealing with people who didn't understand CFS
42:58 How CFS cause is often multifaceted, and the way out is, TOO!
44:05 Caitlin talks about the diet that helped her (note: we are all unique!)
48:07 Powerful words about taking control of your journey
49:33 Caitlin's sleep hygiene tip she got from her naturopath
50:07 ANS REWIRE! We talk about the brain-retraining neuroplasticity program that pulled Caitlin out of CFS (after she had all the other things we mentioned in place)
52:28 The ANS Rewire approach to physical activity
54:14 The ANS Rewire rewiring rounds - Caitlin gives a gist without giving away copyrighted info
56:42 Caitlin's actual meditation protocol & the app she found helpful
57:45 When did Caitlin recover from CFS and POTS?
58:14 How has she transformed BEYOND just physically? What her boundaries look like? What trait did she let go of?
59:32 Caitlin talks about what her life now actually looks like -- I include a collage of pictures
1:00:53 Why she WOULDN'T change it even though CFS was horrible. How she's getting closer to her dream of being a physiologist for people with CFS, EDS and other complex chronic conditions.
1:03:33 Dealing with setbacks and did she ever see the finish line? Her answer makes me laugh.
1:05:01 Caitlin's purpose for starting her instagram blog account
1:05:53 Caitlin's words of wisdom and purpose for sharing her story
Find Caitlin:
/ caitlinmichellehealth
Links mentioned:
ANS rewire: ansrewire.com (holistic brain-retraining program for CFS that Caitlin found helpful)
DNRS: retrainingthebrain.com/?wpam_... (neuroplasticity program I did)
Written transcript coming November 26th on my Heal With Liz blog:
healwithliz.com
^ I share more recovery stories and insights on my written blog.
*New: CFS Recovery Programs Guide by Heal With Liz & Lindsay Vine*
healwithliz.com/programs-guide (A detailed, independent review of ANS Rewire, DNRS, and over 20 other lifestyle & nervous system regulation programs)
****
Update:
My friend Raelan and I are 70% towards our goal of funding an important ME/CFS research project that could lead to a simple diagnostic test. Thanks to all who've contributed. Deadline is May 1, 2022! Learn more: kernls.com/projects/foundatio...

[@HealwithLiz]

Hi everyone, I put the timestamps in the description for easy viewing. Caitlin shares so much useful and specific info. My favorite parts though are actually in between the key points, and the transformation that happens from where her story starts off 4 years ago to who she is today. I hope you appreciate our interview and Caitlin's nuanced approach! Sending anyone who is reading this my support. ❤️

[@LeTrashPanda]

If you're Autistic like I am, turn off the sound to avoid the random music or you'll never get through this interview, lol. Otherwise, thanks for the info, I'm almost in remission from Long Covid and am a Complimentary Medicine provider that focuses on Ayurveda, if only our doctors could have seen what we couldn't....I also have Ehler's Danlos (and dislocations) but it was "invisible" to mainstream medicine until I pointed it out myself.

[@HealwithLiz]

@@LeTrashPanda Glad to hear you've almost recovered from Long Covid! Thanks for letting me know this about the music. I was experimenting and trying new things out, and I appreciate the feedback since I want this to be accessible. For others reading this, I included some background music for effect within the minutes of 2:45 to 5:47 when Caitlin was talking about her struggles and within 7:48 to 8:41 when I had slides up that listed her symptoms and functionality levels. There is no music between minute 8:42 until 1:06:14 where I put background music in her closing remarks. For those who prefer to read the captions, I uploaded captions from an AI program that is 99 percent accurate, and I tried to go in and update any errors the AI transcription made, though there may be a couple mistakes here and there. Also, hoping your knowledge of Ayurveda combined with your experience healing from Long Covid and understanding of the musculoskeletal component can continue to help others.

[@sarahmason3622]

Hi Caitlin, I’m from Adelaide too and am doing ANS Rewire, very nearly recovered. I too see an Integrative Dr in Adelaide, her advice has been the same, I wonder if we are seeing the same lady? Mine is Kerry Harris. Glad you are better. Thanks so much Liz for your work.

[@caitlin5740]

Hi Sarah! I am seeing Paulyn from the same place! It's a great integrative centre! Thank you so much for your lovely comment and I'm so glad to hear that you are nearly recovered! You can do this!!

[@Nsh311]

Excellent. Please keep putting recovery stories on. It’s a source of so much hope when you feel so lonely in this journey at times. It’s a tough one but I hear that it’s truly amazing when you get to the other side.

[@nolamayer4101]

Many thanks Liz and Caitlin, so very happy that you got your life back Caitlin . It’s very uplifting and inspiring when your “down the rabbit hole “ to hear of people getting their life back. Much love to you both 🥰

[@Sarahpreecenelsonnz]

Thank you Liz, and thank you Caitlin. Sarah here from New Zealand. In January 2018 I too was prescribed SSRI's off-label (in my case for a misdiagnosed physical injury that wasn't depression). I too ended up with Serotonin Syndrome. And Akathisia. Both are life-threatening medication toxicities. So sorry for your experience Caitlin, and so glad that you found a Dr who recognised what was happening to you. Unfortunately, even though I was taken off the medication that caused me to be hospitalised with the Serotonin Syndrome and Akathisia, I continued to be misdiagnosed and mistreated (with Benzodiazepines) which severely disrupted my neurological system. I eventually withdrew myself off the Benzos but that withdrawal process was the beginning of my CFS experience (from Oct 2019). My experience of persisting dysautonomia related to the toxic effect of medication is shared by many others who have taken Benzodiazepines as prescribed. I am now very grateful to be 2 years medication-free after my experience of such negative neurological impacts from medication harm, and in the process of transforming through my CFS experience. Also very grateful to my partner for his support, and for seeing vitality in me even through my fatigue. Wishing you both well, Sarah, NZ

[@caitlin5740]

Wow I am so sorry you experienced that! I can't even imagine having experienced the after effects of that syndrome for so long!! I send you lots of love and healing vibes!! ❤

[@WeepingWidowSueAna]

Hi Liz! Thank you so much for these stories of hope. I watch one every day to keep myself motivated. Right now I am at rock bottom with chronic illness - but your success stories inspire me. I hope and pray that one day I am on the other side, sharing my success with the world too!!!!!!!!

[@melindabrown9718]

I’m from Adelaide, Australia too 😊 Still working on my recovery ❤️‍🩹

[@HealwithLiz]

Sending you my support Melinda, hope you find Caitlin's story encouraging! ❤️

[@caitlin5740]

Hey Melinda! Feel free to send me a message on my page! Love meeting fellow Adelaide-ians!!

[@sublimestudi000]

great interview - thank you!

[@catherinejohns7080]

Thanks so much Liz and Caitlin. This was inspiring and educative. From Catherine in Melbourne, Australia.

[@janegelberg2003]

Great discussion, very helpful. Liz, you are a very talented interviewer!

[@HealwithLiz]

Thanks Jane, I sincerely appreciate your kind words!!

[@rachelannbarkley2329]

Newly diagnosed with Gastroparisis and POTS . I needed to hear all of this!! Thank you so much for sharing this. What is the rewiring therapy called so I can talk to my Drs about it. My conditions are all from Long haul Covid.

[@HealwithLiz]

Hi Rachelann --- ANS Rewire is the program Caitlin mentions, I made a timestamp of where we talk about it in the interview. It contains the most scientific research material out of all of them. DNRS, the program I talked about, if you go to their site retrainingthebrain and select Doctor Recommended on the menu, you can see testimonials from doctors if having a medical doctor perspective is very important to you, to consider brain retraining. Most regular doctors are not familiar with the latest research on dysautonomia, how sympathetic nervous system activation can perpetuate these conditions, and how we can harness the mind-body connection to influence our neurology to support our body's healing state. If you are very science minded and practical, ANS Rewire is a good choice.

[@lisamccullough5150]

ANS does not work for POTS. Junk science.

[@seascape1059]

This is such a beautiful testimony of your recovery. Inspiring and life giving. Thank you so much ❤️

[@caitlin5740]

Thank you so so much ❤

[@maciejsiedziako680]

I would love to know specific examples of Caitlyn diet/meals/soups that she made. Specific recepies.

[@caitlin5740]

Hello! Sorry I just saw this now! I really focused on anti inflammatory foods and whole foods! Also ate more protein to keep blood sugars regulated. I liked (and still eat) casseroles with chicken and veg, cooked salmon/steak/chicken with veggies and brown rice, ratatouille, brekkies were things like omelettes or chia pudding with boiled egg on the side and snacks I enjoy dairy free yoghurt, lactose free cheese on buckwheat crackers, apple and peanut butter, carrots and hummus, low carb protein bars :)

[@SplendidlyBright]

Thanks for that, a great interview! I’m in Adelaide also, was just wondering who your fab GP is Caitlin, mine is retiring and I need to find a new one soon! Also re Integrative doctors, did you say there is only one in Adelaide ?? or in your suburb, I’ve seen soooo many! Curious who yours is, Kerry, Kylie, Margie T, Belinda, Roger, could you let me know also, that would be great! All the best ~

[@caitlin5740]

Hi there! I saw Paulyn and still see her! She's based at Integrative Health!

[@ceciliamac4283]

Could you please share the name of the Zinc/ Magnesium supplément you are taking? There are so many out there and my budget is tight. I can’t afford to buy one that I’ll end up not using. Thank you so much Love and light to both of you

[@caitlin5740]

Hi Cecilia! Mine is made up from a compounding pharmacy which is a mag-zinc complex! Best to try your local compounding pharmacy and ask what their recommendations are! Thank you for watching ❤

[@ceciliamac4283]

@@caitlin5740 Thank you Caitlin! WIll do!

[@privateaccount7537]

For future videos PLEASE do not include music. Thank you.

[@elle706]

The music is so distracting while she’s talking 😵‍💫