Katie's CFS Recovery Story: How she stopped her ME/CFS relapses

This was one of my early favourite CFS recovery stories where Katie talked specifically how she stopped ME/CFS relapses.
Katie shares how she first had severe symptoms "I remember clawing along the walls to get to the bathroom" whilst she had Chronic Fatigue Syndrome (ME/CFS).
Severe brainfog that brought her to tears, sleeping up to 21 hours a day and losing weight whilst nobody understood what she was going through.
For years she struggled with the illness the lack of understanding from all the people in her life including the medical profession. After years of relapses from ME/CFS, she finally found a way to stop the relapses and shares her insight.
Listen carefully to her Chronic Fatigue Syndrome/Myalgic Encephalomyelitis recovery story and how against all odds she broke the ME/CFS relapse cycle.
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**MEDICAL DISCLAIMER**: Dan Neuffer, CFS Unravelled or ANS REWIRE do not provide medical advice, and the information available in this video does not offer a diagnosis or medical advice of any kind. The content is opinions and information presented for EDUCATIONAL PURPOSES ONLY, and MUST NOT be used as an alternative to a healthcare professional’s diagnosis and treatment. Only a physician or other licensed health-care professional are able to determine the requirement for medical assistance. Please seek the advice of your physician or other licensed healthcare providers if you have any questions regarding a medical condition.

[@bender9929]

I have had very similar experience. You must stay mentally strong, avoid antidepressants and seek out a support group so you can socialise with people who are also suffering from this condition. I was diagnosed in 2002 when I was 25. I had a year off work, slowly recovered over the next year. I then relapsed in 2008 and took another year off. I had crippling brain fog, restless leg syndrome, muscle spasms, sore lymph nodes, headaches, sore joints, light and sound intolerance and would easily sleep 20 hours a day. I am 45 now and still have the occasional relapse for several days after mental or physical stress. Don't fool yourself, this condition does not go away easily. Journaling, rest, diet and setting limits are key. You can take a step forward and three steps back very quickly. Its like sailing with your anchor out, so chart your own course.

[@bevillenz]

This is a confusing and vague recovery story. According to Katie she was sick with ME for 8 years but during that time was able to resume university, graduate, study aboard in France for a year which was "great" then go onto a teaching job. She had 10 relapses and some of these relapses were "2 days". From the point of view of people listening, that level of health will not seem consistent with CFS/ME and catching a minor cold would not be considered a relapse. Dan did a reasonable job of pointing out this lack of clarity around 40:30 in.

[@ceciliamac4283]

I actually feel like her. I can get by for a day and then crash hard for few days. And also depends on my periods (I feel more the CFS before and during my periods. I can't move. I have to lie down and keep resting). Her story really really spoke to me. The relapse cycle is real. I hope you are better as your comment is 6 years old. Best wishes

[@grahamkeil2253]

Thanks again Dan and Katie Some very helpful insights.

[@michaelfortune9997]

Thank you for the videos! Much appreciated!

[@genesmolko8113]

Acceptance is really hard, because it seems to imply you've given up, this is how things are and will always be, just accept it and that's it.. But that's not what is meant here. The best way I can think of explaining it is like a crying baby. When trying to sooth a crying baby, you accept that it's crying. You do not try to deny it, you do not try to force the baby to stop in any way. You accept that the baby is crying and you sooth it, knowing that eventually the baby will be fine.

[@ceciliamac4283]

I love the analogy with the crying baby. Thanks for sharing. I'm more about Non-resistance. I'm neither accepting nor rejecting, I am just not resisting this or that. I have heard this moto on a podcast and it stuck with me since.

[@mickeymorgan]

Wonderful, Katie! And thanks so much, Don, for being so well-informed and compassionate in behavior and body language. The entire excellent interview . . . been there, done that, still doing that. I am certain that bajumbles of trauma rocked my body like an earthquake . . . as did the wild cocktail of pills for bipolarity, cervical dystonia (getting Botox), bad spinal degenerative stuff up and down, and 4 hip replacements (with all the chemical goodies the wrecked my ASR); an ex-husband suicide, a son in the Marines . . . knocked my socks off. When I woke from the first revisionary hip surgery, I had a huge fibro flare because of the trauma of the surgery, I suppose. (Also prompted a huge bipolar atmosphere). Katie, you seem essentially to say one has to push one's own envelope for a LONG time. You're right. I did 5 mins. walk yesterday . . .. will do 6 today. Thank you for your inspiration. peace, mickey morgan KarmaLifeReadings.wordpress.com

[@CFSUnravelled1]

+mickey morgan Hi Mickey - many more interviews where that one came from - hope that the explanation on cfsunravelled made sense to you!

[@mellraizer]

Absolutely fantastic i hope to share with you one day too :-) Thankyou!

[@NickFontana]

I think it went very easy with her, she kept working, did just some meditation and diet changing, wish it would have been so easy for me. Not a good example for who has a severe form of CFS. :)

[@7oracle]

Nicola Benvenuto I encourage you to have another listen. In the beginning She was actually struggling hugely, could barely make it to the bathroom, couldn't watch TV couldn't go out at all, couldn't use the computer couldn't tolerate light and sound. You might be focusing on the wrong bits :)

[@NickFontana]

yes you are right :) When i posted that comment i was in a very negative state :)

[@jessezookmann5008]

such a great project

[@randomname4726]

Soy does have higher levels of phytoestrogens than other plant foods, but many plant foods contain phytoestrogen. Phytoestrogen does not function in the body the way that actual estrogen does and has actually shown to have health benefits such as protection against breast cancer. All animal products contain actual mammalian estrogen in high amounts, especially dairy as it is breast milk from a female mammal.

[@CFSUnravelled1]

Thanks for your thoughts on the matter.

[@kimwarburton8490]

it is for that reason i cut out all dairy n now have coconut alternatives

[@sandraluisterburg]

Estrogen is a hormone that has many functions, eg bone health. Some women take supplemental estrogen (oral contraceptives) to stabilise hormone levels and find it beneficial. On top of that, soy has a complete amino acid profile, it is a good source of protein when you're vegan or vegetarian. I do find it intriguing that many people with me/cfs are vegans/vegetarian. I wonder if there is any research on this, do people miss certain essential vitamins or minerals? But it seems counterintuitive that many claim to have improved by eating more vegetables.

[@ceciliamac4283]

Coconut oil never sat right with me. I just feel this pressure on my chest/heart area. Few months ago, I read that long term use clogs the arteries. So I guess, that's why my body wasn't taking it.

[@christinewoolgar2205]

so what happened to me when I was 13-14 till my current age (33) ? I have had 2 weeks my whole life where I felt normal, then bam I was feeling like crap again! this video basically says that the illness is all in your head, that your feeling sorry for yourself!

[@CFSUnravelled1]

Let me assure you that is not the message of the video! ME/CFS is a REALY PHYSICAL illness, I know, I had it for over 6 years! Once you understand how the illness works, you will see why the psychological component becomes so important, even if it isn't what started your illness (mine was triggered by an immunisation, many others have non-psyhcological triggers). Here is the link to the video explanation : cfsunravelled.com/video-explanation/

[@ravenslair117]

Christine Woolgar the video and none of Dan’s videos say this illness is in our heads. Listen a few times and perhaps you will hear a different message. Have you tried any treatments to help you?? Wishing you the best towards recovery.