4 years since original post: I'm in charge of my own life again! (CFS / Fibromyalgia)

Hey everyone,

I just wanted to post an update. It's been 4 years since my original post and 3 years since my positive update.

Just a summary: I've struggled my whole life with mind-body symptoms including widespread chronic pain/fibromyalgia, TMJ, migraines, headaches, menstrual issues, panic attacks, IBS. From 2017 for about four years or so, it became very severe. I struggled with severe CFS and then also agoraphobia that left me bedridden, then using a wheelchair, and even after I could walk again, I was homebound because I was getting so many terrifying symptoms when leaving the house. Discovering the science on the mind-body connection through the Curable app was the breakthrough that helped me start getting more control over my life.

When I updated you guys, I had gone from a really restricted life mostly inside my home to finally being able to get out of the house and socialize, do some movement activities like long walks, short bike rides, etc. My life was starting to look halfway normal even if my energy levels weren't very high.

Fast forward a few years and I'm doing more than I could have ever imagined. No, I'm not pain or symptom free. I still deal with a lot of those symptoms. That's the bad new. The good news is that it no longer controls my life. I can do SOOO much more now than back then -- or even before my downward spiral in 2017. I have been able to participate in intensive physical activities like martial arts and dance. Since a few years I've been pursuing my creative ambitions, starting so share my music and perform publicly, which I was always way to scared to do before. I've also been able to travel again to places across the globe and tolerate difficult conditions. I am working freelance from home and coping with full time hours. I'm generally trying to live my life aligned with love rather than fear. Trying to make the most of each day.

Has all of this been a breeze? Am I "pain free"? Absolutely not! I still get a lot of anxiety and sometimes panic attacks. If I over-do it, I get ill. But my stress tolerance is MUCH higher. And I have gotten to know my own boundaries better -- that's how I've been able to expand them. None of this happened overnight. The whole time it has felt like taking one baby step forward, two steps back. Snail's pace. But when I look back over the past 4 years, the changes are dramatic. I'm much more in charge of my own life now instead of the symptoms controlling everything. My symptoms aren't gone but they also aren't worse because of all the new things I'm doing. If anything they are better. But they go up and down to remind me to take care of myself.

I am finding that balance between avoiding/fleeing every activity at the first sign of discomfort vs. pushing through and overdoing it. There's a sweet spot in the middle where I challenge myself to do new things and tolerate some anxiety, but don't traumatize myself. That's how growth happens.

How did I do this? Primarily I worked with the exercises from the Curable app as well as getting regular support from a good therapist who is aware of mind-body issues. Go with baby steps and celebrate the smallest wins. When I went from only being able to lay flat in bed to being able to sit upright in bed, that was a HUGE win. It doesn't seem like much. But that was just as important as when I performed at a concert for the first time, or was able to keep up through a martial arts class for the first time. And find the little things to appreciate in your life NOW. Sometimes we get so caught up in our pasts and futures that we forget what we have now. What have you always wanted to do that you feel like you can't do because of your symptoms? Is there some way you can adapt it so you can do it today? If you want to dance but you can't get out of bed, can you find a way to make a bed-dance? Get creative and take inspiration from others who have gone this path too.

Happy to answer anyone's questions. Keep going and don't give up hope.

 

Congratulations on your success! Thanks for sharing your story which will inspire others.

 

I'm happy for you, well done.

Questions:
- How did cognitive behavioral therapy help you? Can you give us a few examples without going into personal details (private)?
- Do you work out regularly? How often?
- You feel like you used your willpower in order to start making small changes in the beginning?

I'm in your situation, I can relate after reading your message.
Thanks.

 

Thanks everyone for the kind words!

@Sita
- I'm not sure if it's CBT specifically because I've had many CBT therapists in the past. I'd say the most important thing is finding a therapist that you resonate with and who has an understanding of mind-body issues. The PPD Association directory is a good place to start. Therapy helped me understand the way my brain works and the circumstances in my past that helped shape it. It also helps to talk to someone about current issues that are going on, who can notice things that you don't notice. Also, the Curable app has a lot of CBT-based and other psychotherapy-inspired exercises that really helped me get more out of my therapy.
- Currently not, though in some phases of the past couple years I would work out about 2-3 times per week. More important than "working out" is just trying to keep an active/mobile lifestyle as much as possible, whatever it means to you. You have to start where you are. Don't go from 0 to 100 suddenly. At the start of my healing journey, my "workouts" consisted of moving my arms and legs in bed. That's a valid place to start.
- Not sure about the willpower question. Maybe? But finding some kind of peace and acceptance in the present moment is just as important. If you're always pushing and straining yourself, it's counterproductive for your healing process. But of course we need to go through some discomfort to grow and that takes some courage and commitment.

Hope this helps!

 

Thanks for your answers.

Maybe I was not clear regarding my situation. I'm a success story but never felt the need to write mine here. Your story/journey resonated with me because it resembles mine in a way. I did CBT also with multiple therapists, you are right in your comment about it. And I noticed in your signature that you mentioned it in the Treatment Program there. That's why I asked you about your experience with this type of therapy. I found two mind-body therapists here on the wiki list but they were not good. I knew more about it than them at that point in time. That was some 8 years ago. In the end I worked with a great psychotherapist specialized in trauma. She used EMDR method and I had only 8 sessions. They were enough. I did CBT in the past with others ( I changed them because I moved) and they were decent/pretty good but wanted me to talk and talk, something I was OK with for a few months but not forever. At some point it was not necessarily anymore. I understood the process and the idea behind it. How to change the mental patterns/grooves in the brain.

Working out is very important for me. It helps me mentally a lot. Plus I want it for health reasons, I want to die healthy and for vanity reasons, I want to look great naked. What you wrote is great and accurate. Very well said, to start small and do what you can. I started exercising only mentally, using visualizations in the beginning. But I'm a former athlete and I missed not being able to exercise when I was in pain, in bed. Then I started to walk outside a little, then for 40 min/day every day, then working out with weights, then also stretching etc. So yes, gradually.

You definitely used your willpower, for sure. I know I did. Acceptance was hard for me but I got it now. Surrender is not an easy thing to do. There is always another level of surrender, and then another one and another one.

I asked the questions for more clarity and because I was/am curious.

Thanks. All the best to you.

 

So glad to hear things are going much better for you! I think you're right that working out is an important piece of the puzzle. It can be particularly helpful for anxiety/panic if we do it in a mindful way because it can help us get used to the "symptoms": sweating, feeling hot, heart racing, etc. It is excellent training for the mind and body. Wishing you all the best!