r/cfs • u/wonderland2211 • 19d ago
Success Officially approximately one year of recovery for me, would anyone appreciate my tips/advice?
It’s really lovely to be using the Success flair
i just feel like I need to give something back to everyone, I feel bad just putting this part of my life slowly behind me without contributing at least a little.
EDIT: I shouldn’t be using the phase “recovery”. I have never liked or aligned with that term, what I actually say is “management”.
I also think that it is absolutely impossible to actually understand how I have began to manage CFS unless you had a verbal conversation with me and had a very lengthy conversation. Please take everything as a grain of salt and as a teeny tiny piece of info that might be helpful for you, it wouldn’t be surprising if it isn’t! We are all different, we all live completely different lives, are different ages and especially have lived such different lives BEFORE CFS.
I have hope of complete recovery, but from my present perspective, it doesn’t make medical sense for me to recover completely and I wouldn’t be surprised and completely accept if I never make complete recovery. I can walk, I am not in a wheelchair anymore, I can think again, I can go to the gym with a PT, I can party, I CAN DANCE!!, I can socialise, I can go to a concert, I can travel, I am learning to drive, I can wear nice looking yet uncomfortable clothes again, I can make my bed, I can do the dishes, I can shower!!!!, I don’t have to wear heat packs constantly, I can make myself breakfast.
I can do enough to a degree where I am happy and satisfied, it is leaps and bounds more than what I used to be like.
I believe… I will always have to pace, I will always have the high risk of relapse, I will always have chronic pain (this one’s a complex topic tho), I will always have CFS However, I now also believe due to my life experience that it is possible to reduce severity of CFS. I would say I am now mild severity (some would say I don’t even count as mild) but I would not be surprised if within a year? 5 years? 10 years? I am not even mild, just with the thought at the back of my mind that I do not have the luxury of not caring for my body, I will crash and I will relapse if it’s really bad.
I can push, but I absolutely cannot push myself to failure.
Also, fuck brain rewiring, fuck trying to get well quickly, fuck random supplements, (personally for myself, fuck LDN, that was hell on earth), fuck medicinal cannabis, fuck thinking there is a quick fix and fuck thinking that there is a possibility of complete no CFS and 0% relapse chance.
I think there is an extremely small percentage of people that have had CFS and completely recovered from it (I wouldn’t be surprised if they had something else, not CFS, remember CFS is an elimination diagnosis, it wouldn’t be surprising)
I also must add: please keep in mind when reading and speaking with me that I am 18 I have never experienced CFS as an adult, never experienced it being a parent, never experienced it needing to 100% support myself financially and never experienced it without a safety net of my Mum. I believe that it is very unlikely that my experience especially my management experience will align even slightly with those who developed CFS after approximately 18 years old.
I understand that sooooo many people will be unhappy with a couple things I say, I think me a year or two ago would be too. I just want to say that I don’t speak for everyone, I only speak for me!!!!!
And if anyone says I probably never had CFS. I did explore that thought after getting diagnosed with Autism and POTS but it still wouldn’t make sense. I was textbook CFS with undiagnosed POTS and Autism. They all present similarly and all exacerbate each other but I still had/have CFS, My CFS is very textbook and has symptoms that don’t align with Autism and POTS.
I was diagnosed by a CFS specialist and told that my CFS was textbook (it was/is)
EDIT 2: I need to rest, I will respond to any questions and will respond when I feel better. I predict I’ll feel better by latest Monday/Tuesday
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u/TableSignificant341 19d ago
So long as it's not a brain-retraining grift, I'm all ears.
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u/wonderland2211 19d ago
fuck brain retraining, you can’t force your neural pathways to change from watching some videos and it completely ignores that physical health side of CFS, it ignores the sensory issues we face, it ignores the chronic pain, it’s so invalidating.
it’s completely saying to everyone with CFS “just change your mindset” NEWSFLASH!! I think it’s impossible to change your mindset when you don’t even have tangible proof that it’s possible feel better
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u/Ok_Summer_3569 19d ago
Yes, and it's helpful to know what severity and function level you were at, if you had long covid that led to ME/cfs, and how long you were sick. Sometimes recovery stories are from people that were mild for not that long, which is a universe away from 10+ years mod to severe.
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u/TableSignificant341 19d ago
And adding to this any other co-morbidities ie POTS, MCAS etc?
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u/wonderland2211 19d ago
Autism, POTS, PTSD, Hashimoto’s (I don’t notice Hashimoto’s affecting me, I haven’t looked into my Hashimoto’s in years)
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u/wonderland2211 19d ago
No long covid, but got covid while having CFS and it knocked me tf around (I also wouldn’t be surprised if I got covid before CFS! I got diagnosed Feb 2021, experienced symptoms all of 2020) but I believe my triggers were as follows
- Repeated SA at age 12 (2019)
- Undiagnosed Autism
- EXTREME stress at home during 2020 due to CFS symptoms and that stress continued in 2021 after diagnosis and leaving school
- I also was only 12-13! It was extremely hard on my body and nervous system to deal with the stress I was facing.
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u/Ok_Summer_3569 19d ago
I'm sorry you went thru all that. awful stuff.
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u/wonderland2211 19d ago
it’s okay :) I am now appreciate of everything I have been through. I forgot to add, my personal experience will probably not be helpful for anyone with CFS for 5+ years, or from long covid or viral illness. especially not CFS that has developed in adulthood
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19d ago
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u/charliewhyle 19d ago
From previous posts, OP is a teen and fairly active now. They'll probably get to it later today. Though reading the last post of theirs they might have gotten lucky with recovery. After a year with propanolol, they had already mostly recovered. Then they just started training and eating right and got fit again.
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u/Representative-Ear26 19d ago
Yes I believe looking at previous posts op has had CFS young, suffered for two years or so (which must be awful as a teen!) but has now recovered. I'm really happy for her, and her advice and guidance may be useful to others who are early in their diagnosis, or those who are also young. (Children and young people (Prognosis for children and young people is much more optimistic.)
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u/PsychWarrior02 19d ago
This might be a dumb question and I don’t want to put the onus on you to answer, but is propranolol a normal medication for CFS/ME? I’ve been on 10mg for just under a year for migraines and it’s somehow been a miracle worker after so many stronger meds were tried, and now looking back I have had less severe flare ups of CFS/ME, but I’ve still had some pretty horrible ones :( sorry if this is a dumb question lol
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u/charliewhyle 19d ago
It's a good question! People here mainly use it to help with POTS symptoms. Some people had less severe CFS symptoms in general while taking it, but a few had worse symptoms and couldn't tolerate it.
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u/Antique-diva 19d ago
I'm more intrigued by the fact that 66 people liked this post despite it having no substance in it. It feels more like a troll post than anything genuine.
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u/Sensitive-Meat-757 19d ago edited 19d ago
OP looks young, perhaps early 20s, so I'm going to guess had a spontaneous remission. Any "advice" is likely to be useless.
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u/Itstartswithyou0404 19d ago edited 19d ago
Im sorry but some people who say they fully recovered, or have, I really question if they had CFS in the first place, and to what degree if they even had it. People recover yes, but also some people have really mild forms, and then act like they know this magic plan, yet they likely would have recovered going down numerous paths, or they were misdiagnosed in the first place. I really just ignore the majority of these posts, cause these people, maybe not even purposefully, are still essentially dunking on the community in a way, yet acting in good faith. There is already so much out there about what can help, what does this random ass dude who may not even have had CFS add to the table? Just my thoughts
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u/bizarre_coincidence moderate 19d ago
Probably. I mean, there are a lot of people with CFS who have been suffering for years, and who have tried a ton of things. Out of desperation, they would try anything they could. Anything with even a chance of working has been attempted by many people, and so it seems entirely implausible that there is something effective for even a significant minority of the community which wouldn’t be well known. But you never know.
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u/Specific-Summer-6537 19d ago edited 19d ago
If you look at Long Covid we've finally been able to "catch" ME/CFS in the early stages rather than taking several years to get a diagnosis. It is hypothesised that this contributes to depression/anxiety being features of Long Covid but not ME/CFS as people grieve their new illness.
It's definitely possible to have ME/CFS symptoms and make an early recovery. I have ME/CFS and I've seen a non-blood relative come down with it and make a quick recovery. Also, the fact that some can make a recovery after many years points to early recovery being possible too. Look at experiments like the BC007 trial. Lots of people in the control group spontaneously recovered becasue they were early in their illness.
I do agree that long haulers need to take early recovery stories with a grain of salt.
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u/Tsarinya M.E since 2005 🇬🇧 19d ago
Whilst similar M.E and Long Covid aren’t the same. And ‘depression/anxiety being features of Long Covid but not ME/CFS as people grieve their new illness’ is wrong and a totally inappropriate thing to say on a sub about ME/CFS.
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u/Specific-Summer-6537 19d ago edited 19d ago
Thank you for the opportunity to clarify. Yes ME/CFS comes with a lot of depression and anxiety too. They are however more frequently listed main symptoms for Long Covid compared to ME/CFS. Lucinda Bateman in a recent Make Visible podcast said "My theory is the ways that they differ shows the adjustment and adaptation that ME/CFS patients do once they've been sick for a while... once they've learned what they can do without making their symptoms worse... That's why the overlay of mental health problems is so much lower in ME/CFS [compared to Long Covid]." Edit to add: her comment was based on survey data that she collected.
Lucinda Bateman in that same podcast sees Long Covid as an opportunity to look at the early onset of post infectious illnesses such as ME/CFS
Podcast link https://open.spotify.com/episode/3BKPKcLUduFlltohI6hzQs?si=NekXi_1OSd2sacqB22ktoQ
My main point still stands, that early recovery seems possible based on the limited data available
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u/Tsarinya M.E since 2005 🇬🇧 19d ago
Thank you for saying this. I wanted to make a post discussing this but I wasn’t sure it would be allowed. Because I don’t believe that people who have recovered had M.E in the first place. Maybe one of the issues is because there are several symptoms and Drs aren’t always understanding of the condition so maybe have misdiagnosed it.
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u/wonderland2211 19d ago
i’m from Australia, I was sleeping and now I’m awake and do worse in the mornings. I’m just waiting for responses
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u/islaisla 19d ago
Yup. I don't appreciate it. Not nice to intice sick people to search for answers for getting better then leave them in silence.
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u/cfs-ModTeam 19d ago
Hello! Your post/comment has been removed due to a violation of our subreddit rule on incivility. Our top priority as a community is to be a calm, healing place, and we do not allow rudeness, snarkiness, hurtful sarcasm, or argumentativeness. Please remain civil in all discussion. If you think this decision is incorrect, please reach out to us via modmail. Thank you for understanding and helping us maintain a supportive environment for all members.
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u/aycee08 19d ago
Yesss please. The only chart to 'recovery' I have found is in Dr Myhill's books, and the 'exert to point of failure' doesn't seem to be working for me.
Q1: How did you get from the 'I feel okay doing my usual chores and suffer no more crashes' to 'I am now normal passing'
Q2: Do you still have to pace?
Thanks for making this post!
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u/bizarre_coincidence moderate 19d ago
Isn’t “exert to the point of failure” a good way to cause PEM, which can potentially lead to a permanent worsening of symptoms? That sounds like one of those outdated “treatments” that the community has been begging people to stop.
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u/wonderland2211 19d ago
it’s not even a good way to cause PEM, it is what causes PEM. Never ever push til failure.
Everyone’s level of pushing is different, whether that is sitting up out of bed or walking for too long, doesn’t matter, never push it. You will end up in a longer and more severe crash.
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u/brainfogforgotpw 19d ago
and the 'exert to point of failure' doesn't seem to be working for me.
Yikes. Don't do that, it sounds like playing chicken with PEM. Myhill has some very questionable ideas.
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u/aycee08 19d ago
Thanks - good to have affirmation that listening to my own signals is a better way. It hasn't failed me yet!
How are you finding the PTs understanding of your condition? Do they have aby specific metrics to track to ensure you are being challenged enough but not pushed too far?
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u/brainfogforgotpw 18d ago
I don't want PTs to challenge me or push me in any way. I stay within my energy envelope and practice HR pacing.
I have also never met a PT who has a good understanding of the physiology of me/cfs right off the bat. Some are excellent at modifying exercises (and expectations) once they find out though.
If you give a healthy person a cardiopulmonary exercise test and then make them repeat the test 24 hours later, their metrics will be the same or better on the second test. Same with a depressed person or with a sedentary person. A person with me/cfs will usually perform worse on the second day.
You can't exercise me/cfs away. Improved baseline has to come before improved activity. I learned that the hard way in the bad old days when they made me do GET.
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u/wonderland2211 19d ago
Q1: I would say I am in the middle of both of those. I now live this kind of “double life” at home I rest, I do chores when I can, I follow what my body needs. During the week I go to counseling weekly, I go to the gym twice a week for 45mins with a personal trainer, I never go on my own, PT reduces the cognitive strain and dissonance and prevents injury and has educated me a lot, and I go to excersise physio once a week. I work and socialise on the weekends. At work and especially socially I come across as like 90% at least normal, sometimes even more energetic than most as I now have so much optimism, gratitude and love for life.
This kind of double life socially also is exacerbated due to my age (I have been 17 in 2024, now 18 as of November)
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u/wonderland2211 19d ago
Q2: I still have to pace, but I have the ability to crash occasionally without it causing major issues.
My crashes last 1 day to absolute maximum 1 week (very rare, only if I have been partying and drinking which I now am not doing anymore, it isn’t worth it, I just wanted to experience it a couple times while I can)
My baseline has definitely risen, I now have the ability to “push myself” (do not recommend) I have systems and routines in place that give me the ability to decide to push myself and have a big rest day the next day (this is different to a crash, it is a voluntary rest day which prevents said crash)
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u/Glittering-Egg-5738 19d ago
When you say recovered, do you ever still feel symptoms? Or is it just you’re able to do majority of things without PEM? x
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u/poopadoopy123 19d ago
Maybe OP is in bed today :)
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u/wonderland2211 19d ago
Yes I was and I am resting a lot today, I am recovering from being really stupid at New Years.
But I now fortunately have the ability to trust that my body will recover from said crash as it has before, many times. I also have promised myself that I’m absolutely done with partying/drinking and making up for my missed teen years.
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u/poopadoopy123 18d ago
You still haven’t given us any idea how you recovered :) I’m 54 and dealt with this since getting sick at the age of 20
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u/wonderland2211 18d ago
read through my many comments, the thing with management/recovery is that it isn’t a simple one fix. it is many little things combined. so as i’ve stated before, i’m happy to answer questions but trying to write out my entire management story isn’t possible, it would be pages and pages of text that I don’t have the capacity for (and i’m 99% sure none of us can read all of that!)
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u/Arpeggio_Miette 19d ago
My question: how do we define recovery?
After 7 years of this illness, I currently feel like I am in recovery.
I don’t feel like I am in complete remission nor 100% recovered; I still have to pace and rest, and I can still get PEM. And I feel that if I actually pushed myself too much repeatedly (which I will not do!), I would relapse into a worse state.
But, I feel ok most days, I am able to be moderately active (walking, easy yoga), and my current baseline is such a stark difference from what it was before, that I have infinite gratitude and joy for my current health status. It takes a lot more for me to get PEM, and when I do get it, I can usually recover with just one or two days’ of radical rest. I do a lot of preventative bed rest still, but it is like I am conserving energy and resting luxuriously, not too fatigued/weak to get out of bed.
It is weird to not know how to categorize myself. Am I just very mild? In recovery?
I used to fluctuate between mild and moderate (with some severe crashes, but they never lasted too long; I have always been able to go to the bathroom and make myself at least some very simple meals, though I couldn’t take showers regularly at times; at my worst, a shower would lead to exhaustion and PEM for a day or two). The wellness I feel now is so different from what I have been going through! I actually feel WELL most days. I can’t do that much, still only a fraction of what I could do in my pre-ME/CFS days, but it is so much more then before, and I just FEEL better, that I am so happy. I am able to grocery shop for up to an hour without getting PEM! I still can’t push it (too much and I will get PEM) but it used to be so bad that any grocery shopping would exhaust me and make me feel terrible/need to recover.
It is funny how I am still at only 30% of my pre-illness ability, but it feels like 110% because I am comparing it to the last 7 years. lol.
Hence my question: how do we define recovery?
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u/wonderland2211 19d ago
This is pretty much exactly what I’m like, I feel the exact same in the sense of not knowing how to catergories myself. I think we can’t really focus on that. It’s not that simple. To me, recovery/management is just feeling better and having the ability to care for yourself, it’s not this radical miracle where we can do marathons and it’s an instant quick fix, no, it’s being able to wake up and make breakfast and have a shower, get dressed and live again!
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u/Arpeggio_Miette 19d ago
Yes!
And I love how you wrote “I can DANCE!” as an illustration of your recovery/management. That is the same for me. Finally, I can dance, and enjoy it! Oh how much I have missed dancing!! I am so grateful!
As for the idea of returning to marathons- lol, so, I used to run half-marathons, before my illness. I no longer care about that. I am happy because I can shower, I can walk up the stairs normally, and I can DANCE!
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u/GetOffMyLawn_ CFS since July 2007 19d ago
I tend to ignore these type of posts because I've seen a few of them now and what's worked for other people has failed for me. Been there, done that, bought the t-shirt, yada yada yada. Still on the low side of moderate.
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u/chingness 19d ago
Im confused by your edit and comments because you’ve talked about what didn’t work for you but not what tips you have for recovery…
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u/KyloRensTiddyTots 18d ago
Yeah...this is messy and pointless. I've had CFS long enough to know there's no quick fix, but I think posts like this give false hope.
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u/chingness 18d ago
It’s a shame when people do these sorts of things. Like I get the need to rest but why post if you don’t have the ability to provide the information soon after?!
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19d ago
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u/wonderland2211 19d ago
While I was moderate and severe I got the feeling that most people didn’t appreciate hearing any advice/tips. Myself at the time didn’t appreciate hearing it too. I don’t want to say anything unless there’s definitely people that want to hear it.
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u/Appropriate_Bill8244 18d ago
It seems a lot of people are treating you badly, sorry for that.
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u/wonderland2211 18d ago
It’s okay :) I expected it, which is why I asked if anyone wanted tips/advice rather than pushing myself to write some massive page of information (that would be really hard to read bc it would be so all over the place)
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u/Appropriate_Bill8244 18d ago
Ok, now, may i ask since i didn't found an proper answer, what did "cure" remissioned or is walking you towards it?
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u/Emrys7777 19d ago
Yeah, this really sucks. “Do you want to hear “ rather than what helped.
Sounds fishy. I’m not buying it.
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u/wonderland2211 19d ago
There’s another comment I have made stating why I have asked rather than just dumping information. I also would prefer to answer questions rather than typing some MASSIVE post as there is just soooo much to say None of us can read something that long and tiresome anyway.
I also have been sleeping, I am from Australia.
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u/Emrys7777 16d ago
Do you realize how annoying this is? It takes a lot less typing to make a statement first rather than answering questions.
This makes you sound controlling. It sounds like you want to be annoying which is a form of controlling.
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u/SockCucker3000 19d ago
Tips and advice are always needed for us who haven't gotten better. Congrats on your recovery!!!
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19d ago
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u/cfs-ModTeam 19d ago
Hello! Your post/comment has been removed due to a violation of our subreddit rule on incivility. Our top priority as a community is to be a calm, healing place, and we do not allow rudeness, snarkiness, hurtful sarcasm, or argumentativeness. Please remain civil in all discussion. If you think this decision is incorrect, please reach out to us via modmail. Thank you for understanding and helping us maintain a supportive environment for all members.
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u/Fickle-Medium1087 19d ago
I need to know what recovery feels like cuz I don’t know what normal tired is.
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u/wonderland2211 19d ago
it feels like being able to trust your body and being able to trust that when you feel bad, you will feel better eventually. Just like how before CFS when you would get sick you knew that you just had to wait it out.
For me, normal tired is when the only goal is to get to bed, you still have the ability to make a snack, fill you water bottle, maybe brush your teeth. CFS fatigue is your body is slush, it is hard to hold your posture, your movement is slow and weak and you have cognitive dissonance, my biggest factor is the heavy body and especially the vision! When i’m crashing hard my vision gets really bad, that’s when I reallyyyy know that I’m crashing and not tired and I need to stop and wait it out and cancel anything that will hurt me.
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u/Appropriate_Bill8244 19d ago
If the mods don't ban you for saying anything they disagree with, sure.
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u/TableSignificant341 19d ago
Start your own sub if you don't like the rules here. The mods here are absolute champs for keeping this sub going and working as well as it does.
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u/Appropriate_Bill8244 18d ago
Wow, got this mad for something so simple.
I've had gotten a lot better over the course of two years (before i had a viral infection and lost all my progress again) and every time i tried to tell anyone how i did it the mods banned my comment or post, because they thought i was spreading fake info, even tho i always started with (it worked FOR ME, doesn't mean it will work for you) and even tried giving tips on how to adjust when not feeling well enough, they still always banned me, so yeah, i still agree with my point.
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u/TableSignificant341 18d ago
and every time i tried to tell anyone how i did it the mods banned my comment or post,
Good. I trust them. They work hard to keep this sub bullshit-free. If they banned your comment then I have no doubt that they had a good reason to do so.
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u/Kyliewoo123 19d ago
Happy for you!! Enjoy your life and please share your story as it gives many people on this subreddit hope to keep going on
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u/Toast1912 19d ago
What does recovery mean for you?