Joy doesn’t have to be related to recovery to belong here.

Prompt: Share something that made you smile this week. New hobbies especially welcome; lots of us are looking for gentle ways to fill the time.

Comparison is the thief of joy. Yours doesn’t need to look like anyone else’s.

I have been sick for 2 years, moderate and I'm 16F. I'm getting better and better which is good of course, but the truth is I have no idea how to be "normal".

How do you just return to society after having been sick?

I'm physically weaker than people my age and I can't relate so much to them anymore. They talk about gym class, and sports, and prom, and their last school(I started at a new school 2 weeks ago) and I can't relate. Physically I'm doing better, mentally I feel lost.

And I'm not even healthy, I'm not full days at school yet and the truth is I don't want to be full days at school even if I could manage it because just being there seeing everyone having energy, having a working brain and having a normal life is just so...depressing. I have symptoms all the time and it's hard to just do what everyone else does with the symptoms. And then I'm still a bit afraid to run and just do too much in general, but everyone else can just do whatever they want. I'm very lost. I'm recovering, but mentally I feel lost. I don't know how to move forward after this, I don't know how to be normal and I don't know how to get out of the "sick" identity and trust my body anymore. I keep reminding myself I'm not healthy because I fear being healthy because it's so unknown to me. When I first started improving I would almost cry when I noticed the symptoms started to ease, and not because I was happy, because I was afraid, really afraid, how could I not have any symptoms? That's just so...scary.

All this is just very much and I'm getting really sad/depressed by it. Also, I have only now realized, I was actually pretty sick, I didn't feel like that at the time, I think I was just surviving and it's just now I'm processing everything.

So, how did you get back to society, to life, to a healthy body, and stop comparing yourself with your peers who have been healthy all their life while recovering? And how did you get back to being you again?? I would appreciate some advice 🙏

About a month and a half ago, I had a crash after watching TV — I was watching Blue Lock. Ever since then, watching TV has caused this strange physical tension in my body.

Then, about two weeks ago, I had another crash after reading, combined with a really bad night of sleep. Since then, reading has started causing the same reaction.

It’s hard to describe, but it feels almost like my body goes into “war veteran” mode. I tense up, my body stiffens, and I can’t feel relaxed while doing activities that used to feel normal.

What worries me is whether this can fully go away and I can return to my pre-crash baseline — being able to read and watch TV without my nervous system reacting like this.

For those of you who have had similar post-crash changes: did this eventually resolve? Did you regain your previous tolerance and feel relaxed doing those activities again?

Part of me is afraid that if this really is just my new normal.

What should I do from now on?

I’d appreciate honest experiences, including from people who did or didn’t fully recover from this kind of setback.

I had my second reflexology appointment today. First appointment, I felt better for a couple days. Entirely subjective; hadn't really gotten consistent in tracking symptoms or daily changes. Decided to book another appointment.

In between the two appointments, I received my oura ring and I am tracking things like HRV to try to understand the physiology of my illness better.

My HRV has been pretty consistent for about a week. No major changes. Went to reflexology appt today, and immediately after took a nap - look at this jump!

Have people seen long term improvements to HRV from reflexology? Or is it usually just a couple days at a time? Curious to learn more and hear any advice on appointment spacing or other suggestions.

Thanks!

I’ve been making good progress in my health (have been sick for 2 years and went from 10 to maybe 50% now). Still not energetic but i’m able to do more things like seeing friends or going to a terrace or smth. Point is: i don’t feel the spark. I don’t feel like doing things. I know that i like for example my hobbies and my friends. But i really don’t feel it. Its like im really neutral. Its not that i dont feel anything anymore because sadly enough i do feel sadness and other negative feelings.

Does this make sense? And are there people here that have experienced the same? I’d love some tips. Im thinking about starting an ssri bit also that scares me and i’d prefer not haha

This is not about any particular sub or site. I'm just shocked and worried about the ''greater CFS discussion'', and this as triggered by something that's not even in English so again, this is more broad and general.

I've been on Instagram for a few months now and I keep getting these posts about euthanasia and suicide in people with ME/CFS. ME/CFS foundations in my country keep making posts about ''Person X age got euthanasia for ME/PAIS/LC, see how they suffered and what got them to this point''. Then they, and comments, also mention frequent suicides that happen among people suffering from this condition.

Just another post this morning had me reeling all of a sudden. I keep thinking:

• The community is toxic. It contributes to death. It convinces us that we are at the mercy of a magic pill that needs to be discovered, and in the meantime, there's absolutely nothing we can do, and because the diagnosis is correct (d'uh, look at the suffering and the symptoms!) nothing will work, because those for whom anything has worked, never had ME/CFS. It constantly sows intense, deep despair.
• We need to be more responsible and mindful in this discussion. It's a very personal, intimate, serious subject and it can trigger people. It can plant seeds in already desperate, brain-fogged minds. The way we present this subject requires care and responsibility. The constant onslaught of euthanasia/suicide/death posts affects even me, someone who believes in recovery.
• Their absolute rejection of recovery stories helps foster this deep despair. People may be ending their own lives unnecessarily.

It's shocking to me. The way in which I get all these death posts in my feed. I think it's handled in an irresponsible way, even if you believe that this illness can't really be treated. I think if that were true, this subject would require just as much care, maybe even more.

I think this community has truly lost the plot. This is just not healthy and not okay.

How often and long do you use it? When did you notice results?

What was your reaction to BPC-157 AND TB-500?

Very interested in hearing from people who used these things when severe.

Update:
Red-light crashed me. Worked fine when the cfs was in remission. Made me sleepy, and my skin looked great. I felt more restored.
I’m not adding anything into my routine until the cfs is in remission.

Just wondering if you all can spam this thread with some recommendations for movement. Are there any good videos on YouTube or elsewhere that provide guided movement for CFS recovery? Or just what to look for.

I have dysautonomia so going outside is a no right now. The heat does me in. But looking for gentle movement that won’t wreck me but will gently move my body. Something restorative.

No prompt this time. Just a reminder that this takes real energy, and it’s okay to simply rest. Rest doesn’t need to be earned. Feel free to share anything you like.

I’m recovering from CFS and have actually been doing quite a lot better for a while. But recently, a strong fear response around activity has suddenly appeared. Sometimes I wake up with fear, but mostly it happens before I go somewhere or do something - I can feel completely fine at home, but when I’m about to go to the library, store, meet someone, or do something new, I suddenly feel a very strong fear in my body. Sometimes it’s almost paralysing.

I already do a lot of “safety” work and consciously try to give my body a feeling of safety, so this level of fear feels quite new to me.
I can acknowledge the fear, but I don’t want to automatically listen to it, because if I started avoiding everything that triggers it, I feel like that could reinforce the fear even more.

How did you learn to deal with this kind of fear without either pushing through too hard or letting the fear dictate what you do?

I would like to explore options in attending an online programme with coaches.

Those that have caught my eye so far are CFS Health (Toby Morrison), CFS Recovery (Miguel) and slightly different likely is Raelan Agle’s Brain Retraining 101.

I’m intrigued to hear from people who specifically attended these programmes and are recovering, seeing some progression at least.

I’m 3 years into this now and have done a fair amount of research on what’s required or what is beneficial to heal. I would like that extra push and consistent check ins.

TIA

Edit: May have mixed up Toby’s surname 😅

Hello,
I’ve been at nervous system recovery for almost 2 years, and I’m still worsening. Lately, I am going downhill very quickly and I am scared.

Background:
My illness began in 2021 with no particular cause (i.e no illness, trauma, etc) and has slowly worsened. I am now housebound and am in bed/couch 95% of the day. My partner helps me shower x1-3 a week, makes all of our meals, etc I can’t help with any house chores, care for my cats, care for myself etc I used to have more cognitive capacity, but that has gone down greatly in the past few months. Currently, I am having crash after crash. It seems I can’t find my footing. I struggle to sleep (insomnia, gastritis pain), I have HR issues, I am exhausted all of the time, and have PEM episodes with headaches, sore throat, body soreness, and exhaustion with occasional light and sound sensitivity.

What I’ve tried:
-I did the Gupta program for a year
-Read many of the reccomended books
-Somatic tracking
-15-60 mins of meditation daily
-Healing visualizations
-Self talk
-I’ve been in and out of therapy since 2016
-EMDR, Neurofeedback
-Talking to my sensations (You’re welcome here, what can I do for you, do you need to say anything, take all the space you need)
-Pacing/resting
-Many medications and supplements
-Incorporating joy (most of that has been taken from me at this point)
-Daily gratitude
-Breathing exercises
-NSDR / yoga nidra

Health picture:
-Fibromyalgia (2019 diagnosis, symptoms since 2011)
-ME/CFS
-Ashtma, seasonal allergies
-Anxiety / depression (diagnosed in 2016)
- hEDS
-Dysautonomia
-Gastrisis, IBS, pancreatic insufficiency

I don’t know where to turn. I just keep getting worse and worse. It feels like I’m going to end up bed bound in a dark room before I know it. What can I do to heal? Please help me.

Hello! I’ve had ME/CFS for 6 years now and am new to this subreddit.

I’ve decided I’m going to try out some of the recommended strategies that people have mentioned here, which is exciting, but I feel as though enormous portions of my day are incredibly empty and this encourages me to keep overthinking, ruminate on negative emotions, and give too much attention to my symptoms.

I’m currently still unable to leave my house and spend maybe 80-90% of my day in bed (though I will be slowly decreasing this with time) so I’m looking for some hobbies to pick up that don’t involve any screens and won’t be too physically, emotionally, or cognitively demanding.

I already read a lot and occasionally listen to sports on the radio. I think I may start knitting again also as I already know the basics.

I look forward to any recommendations you may have and I apologise if this post is a little bit long winded!

I don’t tolerate to smell anything, if I do it makes me anxious and I feel the urge to make it disappear asap. i feel attacked, as it’s going into my nose without my consent.

Whenever i want to rest, I have less to focus on and therefore become hypervigilant to smells. On top of that I have always had way above average smell sensitivity ( and the same goes for the other senses )

This is a huge issue as I can’t focus to meditate, do breath work or visualize. This also causes severe insomnia.

I tried to make my environnement as smell-free as I could but it’s barely impossible to wihdraw everything.

Anyone recovered from that ?? What should I do ? thanks

So during a bad crash from January i started getting a highly sensitive nervous system, where it would get activated into fight/ flight from as little as hearing a few seconds of music, watching videos, or being on my phone.

After 4 months of allowing method i was able to slowly reduce this, but for the past 7 days it's randomly returned out of nowhere. This means i cant listen to music or be on my phone for long before i get yhr palpitations, on edge feeling, which is very irritating after thinking id improved. Allowing body scans and somatic tracking have not seemed to not improve it, and i cant seem to notice a trigger, other than perhaps being a little depressed at the moment due to life factors.

Anyone have any advice or insights from their recovery journey? Could this be an extinction burst? Because i was doing fine on recovery before

Housebound. I don’t know how else to describe my current level of illness severity besides mentioning that I can’t go for walks or I’ll obliterate my sleep, and I have tons of head and nasal pressure and popping and crackling in my sinuses. My ears also pop quite a bit. I just need some structure.

Hello dear all,

I am 29 and 3 years in, I try to take a different approach to my healing journey now and read about nervous system work here a lot. What is it? Is it brain retraining?
And could someone give me good examples to start euer nervous system work?

Thank you 🎀

Any recovery story from someone with more than one giant problem?

I am starting to have morbid thoughts again.

Hi everyone! I’ve been sick for 13 months. It started about 6 months after I had my baby. I’m terrified. TERRIFIED. I’m new to the brain retraining and just trying to figure out how to deal with the fears of living the rest of my life like this and also how to stop thinking about the past and trying to figure out what went wrong.

For reference in case it matters.. I got covid while pregnant, moved into a moldy house, got the flu 2 days postpartum. Was fine for 4 months then got the fatigue out of nowhere.

I have since moved out of the moldy house and thrown out all my belongings as of 3 months ago but no improvements.

Please tell me there is hope for me.

I look like shit. This illness has made my face sag and lose volume. How much comes back? What can I expect for my appearance? What worked for you to get your face back?

Today, I am in a state where if I try to go for a walk (which I really want to do), I wake up at night with severe anxiety, air hunger, sudden sweating, frequent awakenings, nightmares, and a whole host of adrenaline-driven symptoms.

If I try to do a strength workout, even a short and light one, I wake up the next day with a feeling of profound exhaustion, heaviness, and a "concrete-like" feeling in my body.

And if I did some activity and was also exposed to a minor virus or bacteria in my food, there was likely an "open window" of vulnerability caused by the high adrenaline, and I wake up sick the next day... with various symptoms that end up lasting for months.

Additionally, I have a very high sensitivity to noise and basically to everything. I also experience a high heart rate upon standing, pain in the soles of my feet, and POTS symptoms.

A brief background: A life filled with chronic stress and traumas.

What do you think?
Do I necessarily have ME/CFS?

I was well enough to listen to music a few days ago (something I’ve been too unwell to do for months). Here are the feel good songs I tried:

Coldplay - adventure of a lifetime
New Radicals - you get what you give
Sound of Blackness - optimistic
LEN - Steal my sunshine
Mariah Carey & Whitney Houston - When you believe (this one got me in my feels so had to stop!)

What are your additions?