Intro- CFS, Long Covid, Feeling lost

Hi everyone. This is my first post here and I'm so glad I found a place like this. Looking forward to hearing from all of you and sharing my full recovery story one day. Until then, I'll just cut right to it.

In early February of 2020 I got hit with Covid and then West Nile a month later. After TONS of horrific symptoms and 6 ER visits, things finally (somewhat) settled down and I began to finally live my new, chronically ill life. I saw 3 specialists and 2 GPs with a myriad of imaging and blood work done until I was finally diagnosed with Chronic Fatigue Syndrome.

April 1st of this year, I was recommended the work of Dr Sarno from former my martial arts instructor who claimed it had gotten rid of his back pain and migraines. I subsequently blazed through the audiobook of The MindBody Prescription twice and was sold on the theory of CFS being autonomic nervous system dysfunction.

Much like what is said in the book, just the knowledge alone has alleviated some of my symptoms. I can walk for an hour, do some pull ups, make my meals, etc etc. Stuff most people with CFS absolutely (understandably) dread.

After having a few terrible days symptom wise, I came up with a few questions I'd like to ask though.
1) I understand the general idea of how to rid oneself of TMS, but not the specifics. what do you PERSONALLY do on a daily basis to implement what Dr Sarno was talking about? I've been looking around and there's a TON out there.

2) Have any of you, while along you recovery journey, dealt with high heart rate/POTS/tachycardia? Its the one ******* symptom that scares me. I don't get many flutters, standing dizziness, or chest pain, but ANY time I check my pulse, its 90-120. Did it go away?

3) Very broke person. No money for TMS coaching/therapists or mind rewiring programs for CFS. What are some solid free resources?

Thank you all so much

 

I had similar fatigue/heart rate symptoms for a few months and they went away slowly when I learned about the polyvagal theory and exhaled long and slow.

 

@CarlPanzram:

First of all, I'm sorry about your terrible symptoms days. I've had a few recently as well, so you are not alone. As for specifics, that is a good question. In a book I bought not long ago "Back in Control" by David Hanscom, he largely follows a lot of the same ideas as John Sarno, but with more specific advice (he is a back surgeon who suffered from nerves-induced pain and other symptoms, and over time cured himself of it). He has a web site it seems, backincontrol.com, although it doesn't have as much in depth info as the book. (the "roadmap" he gives seems to be under the Resources pulldown).

His biggest thing is daily journaling ("expressive writing"). Once or even twice per day take 15-20 minutes and write your thoughts, positive or negative, writing in longhand. It could be about past traumas, current worries, some good or encouraging thing that happened, some happy memory, or whatever I guess. Then when you are done writing, tear it up (I guess ensuring you can really write anything without fear it will be read). The other major things starting off are ensuring you get a good night's sleep, using meds if necessary, practicing "active meditation" (a very brief period of actively focusing on something), not complaining too much to family and friends ("making yourself a victim"), regular physical exercise, and being grateful, like daily cataloging the things in your life you are grateful for. The other thing I would add to that (that he mentions too, but apparently was not a part of his personal program) is daily mindful meditation, mindful breathing. I think there is tons of evidence showing that developing meditation as a habit helps many things. I am personally just trying to develop these as habits. I think it takes a little time to "get the hang" of mindful meditation.

The key thing that he states is the need to turn these kinds of things into consistent habits to reprogram your brain.

There are probably other concrete things people could suggest, but that is what he says worked for him, and many of his patients. He is a surgeon who will operate on someone's back if there is a very clear structural issue, but apparently he gives all of his patients this "protocol" and tells them to try that first, and says it has worked for many of them. ("I have now watched hundreds of patients become pain free much faster than I did").

hope it helps

Actually one more thing regarding your heart symptoms: he says at one point he had 16 different symptoms of what he calls neurophysiological disease (your nervous system affecting your physiology), and among them migraines, back pain, burning in both feet, tinnitus, migratory skin rashes, chronic tendonitis, and others, but among them he lists chest pain and heart palpitations.

 

Another free resource that could be useful is a British lady named Dani Fagan has a site (see here: https://mytmsjourney.com/about-me/ (About Me)), with a lot of resources, free yoga classes. She also has a lot of content on YouTube. Somewhere in there she lists "things I do every day", I can't find it right now (site is not really easy to navigate), but in there she lists daily breathing and meditation, positive affirmation and visualization of good outcomes, daily exercise, journaling. Not really different from what I listed above from the David Hanscom book.

 

@hawaii_five0

This has helped a ton. Mostly in the reassurance that the heart issues are also TMS. Thank you so much for the resources too.

 

Hi Carl. If you go to my profile and click on My Story, the second half lists all the things I did to recover from TMS. Other Success Stories often list what people specifically did to recover. If you go to the Success Stories sub-forum, you will find many there.

Also, the Pain Recovery Program is free and a link is provided on the top of the page.

Best wishes.......

 

Hi Carl,

Covid and West Nile! You sure been through a lot. Glad you made it to this forum. Lots of good resources here.

I had heart murmur that went away after I recovered from TMS. So hopefully, as you recover you will see improvements in your health. Actually, my hay fever, heart murmur, gastritis, and reading glasses went away as I was recovering from pain and disability.

Regarding your question “1) I understand the general idea of how to rid oneself of TMS, but not the specifics. what do you PERSONALLY do on a daily basis to implement what Dr Sarno wastalking about? I've been looking aroundand there's a TON out there.”

That’s exactly the question I had. I knew enough psychology to combine Dr. Sarno’s protocol with techniques used by Olympic athletes for peak performance to design a recovery plan. It helped me improve immediately and recover rapidly.

In this interview with Omar Pinto, host of the very popular Sharing Helps Addicts in Recovery podcast (SHAIR) I explain in detail how it works and how you can design your own recovery plan. He invited me to provide a natural drug-free treatment option for pain. Hope it helps.