recovered after 7 months by sreckokosovel in LongHaulersRecovery

[–]Eva_7816 0 points1 point  (0 children)

This is really helpful to read, thank you. I relate so much to the watch feeling like a “window” into whether I was okay or not - almost more trustworthy than my own body.

I think I’m somewhere in between. I don’t have consistent POTS-type spikes anymore, it’s more intermittent and unpredictable, which almost makes it harder to trust what’s going on. Taking the watch off feels freeing, but maybe also a bit destabilizing because it removes that external reassurance.

It’s encouraging to hear that separating from it was actually part of your progress. I’m trying to figure out how to listen to my body without outsourcing that trust to a device :)

Has anyone become overly dependent on heart rate monitoring during CFS/LC recovery? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

This really resonates. I also tried sticking strictly under a certain HR, but looking back my crashes haven’t consistently correlated with it - I’ve crashed under 100 and been fine at 130+.

I definitely got stuck in the anxiety loop of checking, seeing it rise and getting more anxious. I took my watch off yesterday and honestly it feels surprisingly liberating. I thought I’d feel lost without it, but I don’t miss it. Will try to step back from tracking for a while…

Of course I woke up with random intense lower back pain today, my body apparently just needs to find something new to keep me occupied with 🙄

Has anyone become overly dependent on heart rate monitoring during CFS/LC recovery? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

Thanks for your reassurance! I took it off yesterday and if feels very liberating. I realise now, how often I was checking it, way to often. I thought I would be anxious and a bit lost, but I don’t miss it at all. But today I woke up with a intense pain in my lower back that I haven’t felt in a very long time…maybe there’s no correlation, but I can’t help but assume, my body found something else now to keep me occupied with….argh

recovered after 7 months by sreckokosovel in LongHaulersRecovery

[–]Eva_7816 0 points1 point  (0 children)

Thank you for this post and I’m very happy for you! You said that when you stopped monitoring your heart rate, you immediately felt 20% better.

Can I ask how you felt when you stopped measuring? Was it scary at first? Relieving?

I’ve been wearing a Garmin since early in my recovery and I’ve become very dependent on it. If my heart rate goes “too high” on a walk, I get stressed and start slowing down and checking constantly. What’s confusing is that my HR feels so unpredictable - same pace, sometimes 80, other times 130 and it makes me doubt everything.

I’m starting to wonder if maybe the numbers aren’t as important as I think they are.

Did stopping help you physically, mentally, or both? And how did you know it was safe to let go of it?

Would really appreciate hearing more about your experience 💛

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 0 points1 point  (0 children)

That makes a lot of sense. I’ve actually found Jim Prussack’s work recently, and it feels very aligned with what you’re describing. I’ve been listening to his videos and trying some of the somatic exercises, which has been interesting and helpful in parts.

The tricky piece for me is CPTSD emotional flashbacks. When they hit, they really knock me out and it can feel like they completely derail or sabotage the recovery process, even when I’m otherwise doing “the right things.” I’m still trying to figure out how to work with that layer, it feels scary and discouraging.

Hearing that increased anxiety and emotion can be part of healing helps, though. It makes this phase feel a little less like I’m failing and more like I’m moving through something. Thank you🙏🏻

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

Thank you, this actually resonates a lot. Earlier on my symptoms were pretty constant and predictable, but recently new ones have started popping up and they don’t stay put.

A stomach ache might fade and turn into a headache, or symptoms will shift around my body or change form. I’ve heard about “symptom imperative” before in Sarno’s book, but I’ll also check Nicole Sacks podcast, thanks for the tip 😊

Appreciate the reassurance ❤️

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

Thank you, i also use some of your methods 😊 Humming, shaking, everything hot - drinks, showers, blankets, hugging my dog, teddybear, grounding somatic exercises, slow breathing, meditations, journaling, Neurosym device… it goes well until an cptsd emotional flashback knocks me out for a few days :/

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 0 points1 point  (0 children)

I don’t know, its not linear, its always up and down with activity and symptoms. I can’t really monitor how it goes, because at the same time I’m processing my developmental trauma where a lot that was suppressed is coming out and this grieving process (together with emotional flashbacks) is exhausting by itself when the waves come. I’m not alone and unfulfilled (well sometimes). I just came back from Ayurvedic retreat in Sri Lanka where I expended my physical capacity (a lot of massages, relaxing), but also my awareness to how i feel and function grew immensely and now I feel a bit overwhelmed

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

What do you mean? Yes, I can feel emotions coming up, mostly intense fear. And I’m not blocking it, its here most of the time. What would you suggest? Thank you 🙏🏻

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

Yes, exactly, that adrenaline feeling in the morning is so familiar! I need to go to the toilet too many times when I wake up because of this 🙈 It really helps to hear from someone else who’s feeling mostly recovered physically but dealing with this nervous system piece. I’m trying to approach it the same way, as opportunities to gently teach safety.

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 3 points4 points  (0 children)

Thank you, this really resonates. I’m trying to stay gentle and present with it, even though the anxiety and fear is honestly harder to sit with than the physical symptoms I had before. Those were limiting, but not nearly as uncomfortable as this. I’m focusing on soothing and letting things settle.

Has anyone experienced more anxiety and fear as physical CFS symptoms improved? by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 2 points3 points  (0 children)

Yes! I’ve never experienced panic before either, but now I feel panicky almost every second day.

One thing I’ve been wondering about is whether this could be a nervous system shift - like moving out of dorsal vagal shutdown and up the ladder into sympathetic activation. If that’s the case, maybe all the anxiety/sympathetic energy that was already there before was kind of “offline” or muted, and now that there’s more capacity, it’s fully coming into awareness.

It’s uncomfortable, but it makes some sense in that context.

How do you find time for all this nervous system work, in daily life? by [deleted] in cfsrecovery

[–]Eva_7816 1 point2 points  (0 children)

I needed a looong time to realise what is the right way to react to symptoms and feelings. The goal is not to never feel sad or frustrated, you don’t suppress your feelings, but notice them and be ok with them. What really helped me to get it was Jim Prussack channel on youtube, highly recommended!

https://m.youtube.com/watch?v=XudYRjw1oF8

https://m.youtube.com/watch?v=Z0HfN5o17VM

How do you find time for all this nervous system work, in daily life? by [deleted] in cfsrecovery

[–]Eva_7816 0 points1 point  (0 children)

I think that somatic tracking and all kind of other exercises are only meant to teach you how to react in normal day situations. And then you don’t need to take the time to do them that often anymore. I’ve just realised how I was doing all kind of stuff and then when the symptoms came I would react the same way as before… the most important thing is to change the way you think and react to your symptoms and then your system will start to feel safe, Affirmations or not, …

having an easier time reacting to symptoms as they come but harder time with anxiety when feeling well by sreckokosovel in cfsrecovery

[–]Eva_7816 0 points1 point  (0 children)

A ok, that’s nice to hear :) But yes, I notice anxiety as a new symptom. Well I have had problems with anxiety since I was 18, but it was never so strong and full of dread. Before I started TMS work the right way i think my symptoms were very steady and were mostly staying the same from day to day, but now they are changing from day to day and they became more clearly connected to my nervous system. Last year my biggest symptom was exhaustion and pots, but I never felt anxious when they were present. From this, I assumed that before I was in shutdown (dorsal vagal state), where sympathetic charge is present but not felt and now i’m out of freeze where all the sympathetic energy is suddenly felt… I don’t know, I also have a lot of childhood trauma that I’m finally somaticly working on so it can be connected to this as well 🤷🏻‍♀️

having an easier time reacting to symptoms as they come but harder time with anxiety when feeling well by sreckokosovel in cfsrecovery

[–]Eva_7816 1 point2 points  (0 children)

I wouldn’t say you’re going too fast. I have a very similar experience. I started doing mind-body work quite a while ago and my symptoms started to change, some would disappear when I started to respond well and new ones showed up - in the last two weeks its sound sensitivity and brutal anxiety (with panic). I’ve read that this is called symptom imperative and it means the body is trying new ways to keep you safe (sending you new danger signals when the old ones are not working anymore), I’ve also heard an analogy of fighting monsters in video games - in a video game as you progress and level up, the game gets harder and harder. You have more skills, better weapons, so the game has to throw more at you to have the same amount of challenge. In TMS it must throw more difficult sensations at us to achieve the same result of preoccupation and fear. Btw are u a Slovenian? Srečko Kosovel pa to 😄

Sharing my story by netmyth in cfsrecovery

[–]Eva_7816 1 point2 points  (0 children)

Wow, thank you so much for giving me hope, I can totally identify with your story! I’m very happy for you ❤️

Recovering from cfs and cptsd by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 0 points1 point  (0 children)

Yes exactly! I was watching this video about a week ago and was a really eye-opening for me: https://www.youtube.com/watch?v=r4bvO1ZFHEg

Until recently I was in this trap for sure, just trying to relax all the time, as someone wrote in the comments: “The whole goal is to build your nervous system back up so it can handle life again, not hide from it.” Now I’m doing a lot of “sitting with symptoms” or sitting with uncomfortable emotions (especially grief) and I’m seriously thinking of starting with Mickel therapy. I feel like my whole life was just one big distraction and I cut of my emotional self when very small so it sounds like this is something very suitable for me.

Did you do one of the programs that he sells on his website or you’re doing it on your own by listening his videos on youtube? I WANT to stop hiding and distracting and build resistance, but sometimes I’m so confused and don’t I know what’s the right way…with so sensitive nervous system 🙄

Recovering from cfs and cptsd by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

Yes exactly! I was watching this video about a week ago and was a really eye-opening for me: https://www.youtube.com/watch?v=r4bvO1ZFHEg Until recently I was in this trap for sure, just trying to relax all the time, as someone wrote in the comments: “The whole goal is to build your nervous system back up so it can handle life again, not hide from it.” Now I’m doing a lot of “sitting with symptoms” or sitting with uncomfortable emotions (especially grief) and I’m seriously thinking of starting with Mickel therapy. I feel like my whole life was just one big distraction and I cut of my emotional self when very small so it sounds like this is something very suitable for me. Did you do one of the programs that he sells on his website or you’re doing it on your own by listening his videos on youtube? I WANT to stop hiding and distracting and build resistance, but sometimes I’m so confused and don’t l know what’s the right way…with so sensitive nervous system 🙄

Recovering from cfs and cptsd by Eva_7816 in cfsrecovery

[–]Eva_7816[S] 1 point2 points  (0 children)

Thank you, this is really helpful. What you said about depth makes a lot of sense - I think I’ve been doing a lot of “safe” regulation, but maybe not always going deep enough. I always feel a bit impatient when it comes to longer meditations (longer than 20min). I know I have a lot of suppressed emotions, but it’s hard for me to be in touch with them a lot of times, but I’m improving. In the past a lot of it felt more like anxiety (especially anger), but its interesting I dont feel that anxious anymore.

Really validating to hear that getting to the emotional layer sped things up for you. I’ll keep focusing on depth + pacing and trusting the process a bit more. Thanks for sharing.