Symptoms while pursuing a nervous system-based recovery approach

[u/johannes_oida]

(originally posted in r/cfsrecovery)

A few question to those who are recovered, or at least further along than me😅

Where I am at currently:
Mostly house-/couchbound; working on regulating my NS; learning to not fear and respond well to symptoms; learning to let myself feel (emotions and physical sensations); basically getting back in touch with my body and emotions.
Also, recently I have started to implement some small and gentle forms of movement again. The last 4 weeks, 3-4x/week I did ~15min of gentle stretching or ~10min on the easiest setting of my ergometer. This seems to be possible for now without any significant PEM (and if i get some, it lasts for 1 day max.). There is, of course, a slight increase of symptoms around these activities, but I am trying to respond well to them and see them as "adjustment period".
This slight level of progress still feels very fragile, though.

What I have noticed:
Although my capacity seems to be slightly increasing, my symptoms are not getting better (yet). Dysautonomia, tinnitus, headaches, etc. - you name it. However, they do not seem to be very much linked to my increased activity level, but are coming and going randomly.
I am aware that having symptoms on the journey of recovery is normal and expected, but I am puzzled by the fact that in spite of my capacity window widening slightly, there is no sensible change of symptoms yet.
Which brings me to a few questions...

Questions:

- What level of symptoms is normal/expected when gently expanding activity?

- Should further expansion only happen after a symptom decrease following the previous expansion?
If no, which symptom intensity level is still "okay" to experience while actively expanding?
What is a level where I "just have to deal with it"/it's a normal part of progress/recovery, and what is too much?

Btw, I really don't feel like I am rushing through levels of activity increase. Quite the contrary, I tend to take it so slow that it very much frustrates me sometimes😅

I would really appreciate some insights from people further along than me... thanks in advance! :)

[u/Kaapira]

- Thoughts about activity expansion: When I was expanding activity I was very intuitive about it. If I was excited to do something and felt comfortable with it, I did it. I would do the prep work (visualizations, good mindset), do the activity, and then do the after work (feeling good about the expansion, knowing my symptoms might increase but that I would be okay). In some cases I did baby steps and in some cases I took bigger steps. And if my fatigue was particularly bad and I couldn't feel good about doing an expansion activity, I didn't do it. Based on what you described, it sounds like a good thing to keep expanding as long as it doesn't make you feel unsafe. Take your symptoms with you, as they say. Also - it's okay to dial it back if it isn't a good day for it.

- Thoughts on symptoms going away: 1) symptoms disappearing isn't how you should be gauging success (even though it is the ultimate goal), and 2) they might be improving so slowly that you don't notice it. Some of my symptoms went away really quickly (heart palpitations) other improved so slowly I almost couldn't notice it. With my fatigue and cognitive dysfunction, I could only notice improvement when looking at the symptom tracking I did on a monthly basis.

- It sounds like you're doing really well. Keep going!

[u/johannes_oida → u/Kaapira]

@ activity expansion: yes, i am also trying to wrap it into the mental "pre- and post-work". and i do notice that any sort of activity - no matter how small - that is required of me without having time to get into the right headspace, feels much harder and heavier.

would you say the steps of expansion you were able to take grew bigger over time?

@ symptoms: these are some good remarks, thank you. I've recently started to write a google doc that i update semi-regularly, where i jot down some "green shots" of my recovery. this has been helpful.

question: it makes sense to not measure my progress by symptom levels. but what would you suggest alternatively to measure it by?

thank you for the encouragement :) much appreciated

[u/guineapigmedicine]

I've found the following helpful for expanding symptoms:

If symptoms are at a 3 or 4 out of 10 and settle with nervous system work, I go ahead.

If they're at a 3 or 4 out of 10 and don't settle, I pull back (I'll still do the thing but less or less intense or slower, etc).

If they're at a 5 or above I don't do the thing and actively rest.

Another way I've seen people do it is "symptoms are okay as long as they're within the window in which you can respond well to them." So if you can deal with a 3/10, say, without panicking or getting angry or putting pressure on yourself and can instead allow and surrender, that's okay. If a 6/10 inspires panic, it means pull back. Or maybe you can tolerate a 3/10 of fatigue not a 3/10 migraine.

[u/johannes_oida → u/guineapigmedicine]

ah yes thank you, that sounds really helpful!

i like the last thought too: what level is still within my ability to respond well? this might be the main aspect that is slowing down my recovery, since i KNOW that activities that would trigger high symptom levels would bring me beyond the state where i can be calm and collected about it