New to this forum - trying to improve CFS

Hello,

I'm Lucie, 25, from Germany and have Chronic fatigue syndrome. About 3 years ago, I woke up unable to get out of bed with a whole bunch of symptoms: Severe fatigue, brain fog, exercise intolerance, muscle weakness, POTS, insomnia, light and sound sensitivity, nausea, headaches, ice cold hands and feet, shortness of breath, blurry vision, extreme pallor and much more. After some time, I was diagnosed with CFS.

Over the last years my symptoms have improved a little bit but I'm still severely disabled. I can go for short walks but that's about it. I'm willing to try whatever it takes to get my life back. I've started listening to Dr Sarno's book (The Mindbody Prescription), is this a good starting point? I'm also seeing a Somatic experiencing practitioner once every two weeks.

About my past:

I was born about 10 weeks premature/early and had to stay in the Nicu for two months. I therefore didn't attach properly to my parents - I have a dismissive avoidant attachment. I barely remember my past, which is also due to my attachment style (dismissive avoidantly attached usually don't have a lot of memories). I have always dealt with my emotions by suppressing them, it was the only thing I knew.

There was a lot of arguing at home, mainly because of my twin sister - she had massive amounts of rage and anger. She would insult me daily and attack me verbally almost 24/7. I was also bullied at school. I have never felt connected to anyone before in my life, not even my parents. They provided us with everything, but I feel like the emotional support was lacking.

I did pretty good in school and university. I would describe myself as a hardworking and very self critical perfectionist (a lot of negative self talk) and I would continuously push myself to get better and better in almost every area of my life (university, work, sports, other hobbies). When I "failed" and didn't get the grade I wanted, I would see myself as a failure and would continue to be even harder on myself.

Maybe performance/workoholism helped me to not slip into depression because of the missing emotional connection to anyone. Plus the external validation increased my self esteem... Until I crashed hard and developed CFS. Although I did experience mind body symptoms before: insomnia (since birth basically), allergies, hair loss, acute hearing loss, tmj issues, stiff neck muscles and more. I ignored all those symptoms and pushed through which lead me to developing CFS.

I know this is a long story but I couldn't keep it shorter. I'm hopeful for this journey because I know I'm a typical case of mind body disease (this took me 3 years to accept), although this journey might take a long time. A goal of mine is also to reconnect with my emotions, especially felt emotions in the body since I hardly feel anything in my body. Plus there might be a lot of repressed anger since I don't remember being angry at any time and I don't even know what anger feels like. Basically the only emotions I have is occasionally joy and sadness and fear in extreme situations. That's it - finally .

 

Welcome to the Forum! You've written an excellent introduction and you are definitely in the right place. Starting by reading books by Dr. Sarno is a great place to start.

Here is a link to an article by Dr. Schubiner (a student of Dr. Sarno) about how CFS is a mindbody disorder.

https://www.tmswiki.org/forum/threads/article-on-chronic-fatigue-syndrome-by-dr-schubiner.12744/#post-66998 (Article on Chronic Fatigue Syndrome by Dr. Schubiner)

Here is a list of other resources that you may find helpful:


Once you’ve read or re-read a book by Dr. Sarno and have taken some time to digest it, you will have a better idea of how you might proceed in dealing with your symptoms. To get an idea of the appreciation experienced by Dr Sarno in his lifetime, check out the Thank You Dr. Sarno book project here: https://www.thankyoudrsarno.org/2012/03 (March, 2012 - Thank You, Dr. Sarno)


The ACEs "quiz" is a short Yes/No questionnaire to help you recognize how your childhood might be affecting your mental and physical health in adulthood. This thread explains the purpose and how to use the results of the test: https://www.tmswiki.org/forum/threads/aces-quiz-online-printable-versions.27061 (ACEs "quiz" - online & printable versions)

We also recommend that you visit the Success Stories subforum at https://www.tmswiki.org/forum/forums/success-stories-subforum.27/ (Success Stories Subforum). Reading just one Success Story every day is a great way to be inspired about doing this work.

Consider investing some time in completing the Structured Educational Program. It will teach you some of Dr. Sarno's methods and provide skills for your self-recovery. Among other things you will learn 1) to recognize that NONE of this is your fault, and 2) how to reframe your self-perception. The program is free and does not even require any kind of registration: https://www.tmswiki.org/ppd/Structured_Educational_Program (Structured Educational Program)

Anxiety is a common TMS symptom, and needs to be addressed directly as part of the recovery process. Resources by Dr. Claire Weekes are very effective in dealing with anxiety. You can find more here: https://www.tmswiki.org/ppd/Overcome_Anxiety_with_Dr._Claire_Weekes (Overcome Anxiety with Dr. Claire Weekes) or read her seminal book "Hope & Help For Your Nerves" which is also readily available in multiple formats and has probably helped tens of thousands of people worldwide since it was published in 1969!

Journaling for emotional awareness (also called Expressive Writing) is a vital tool for recovery. Resources for emotional writing include:
The TMSWiki’s guide to journaling: https://www.tmswiki.org/ppd/How_do_I_journal%3F (How do I journal?)
Nichole Sach’s method of journaling, called Journalspeak: https://www.yourbreakawake.com/journalspeak (JournalSpeak | BreakAwake by Nicole Sachs)
David Hanscom MD and former back surgeon, from his Back In Control program: https://backincontrol.com/the-4-stages/stage-1-laying-the-foundation/begin-expressive-writing/ (Expressive Writing - Back in Control)


And feel free to ask questions any time. We are all here to support one another.

 

Hi, @Lalaland123 ! Welcome!

I related to your story so much. So sorry to hear of your troubles. It must be hard!

I didn’t have the exact hard childhood you had, but I had a hard one. And like you, it caused me to become a perfectionist and to also not feel my emotions in my body. I’ve been on this wiki for 5 months.

This forum and everything I’m learning has changed my life. And it will change yours. You sound like you have a terrific grasp of what’s going on and the dedication to heal. So glad you’ve joined us! @Ellen ‘s advice of where to start is the way to go. Best wishes to you!

 

I can't add much more to what @Ellen already has above - all of it's gold.

I did recently watch a great success interview with Dan Buglio and favorited it. Phil talks about his CFS being one of his symptoms. I really enjoyed this video because you could feel his emotions as he navigated TMS. This video really tugged at my heart strings.



Best wishes!

 

A TMS coach I used also recovered from CFS/ME Here's her story: https://www.rebeccatolin.com/blog/chronic-fatigue-syndrome-crash-to-cure-story (Chronic Fatigue Syndrome: My 13 Year Crash to Cure Story — REBECCA TOLIN | MIND-BODY & LIFE COACHING) and she has a few other CFS client stories on her website too.

 

That is a great success story, @HealingMe ! I loved it, too. I really like the “against all odds” stories. This is a biggie. Very inspiring!

 

Cactus, can you please say a little more about having a TmS coach? How long did you have her? How often did you talk? How did it help you? Thanks!!!

 

Thank you all for your responses! I am going to look into all the links and videos for sure!