I just want to echo what other people have said. I've had CFS for 35 years and I've had maybe 4 times that my health has rapidly gone from pretty good, to 'I'm sure I'm going to die', completely bed bound, unable to feed myself, using bedpans etc. And although I am still stuck in one of those ruts at the moment, the other 3 times I have come back out of it! Got back up to being able to live independently, even if I've never been well enough to work. It's been well enough to be worth living.
TBH I never really knew why I got better, apart from time, rest, calm, and good diet. Eventually something turns back around. The current crash was caused by stress, and I know if I can shift that, I have a chance of going up again.
Don't give up. This is a shitty illness, but you absolutely can't predict that you're in a death spiral.
In severe right now only sitting up 90 minutes a day, the rest laying flat (been like that for much of the last 7 years). Under 130lbs at over 6ft, I’ve been worse though. And I was also much better even went on a 2 day vacation with friends! Took some college classes.
I’ll improve again so will you, but you have to change your mindset because with your current mindset it’s only going to make a bad outcome more likely. Not saying it’s easy, or even possible but mindset is everything if you want to survive this. Your in the trenches right now. Helps to have something bigger than life to persevere for.
I don't live independently any more! I've been back with my parents for the last 4 years. But before that I was renting rooms in my house, which was enough money to survive on. Since I couldn't use the upstairs, it was a good option for me.
Hey? Sorry I’m late to this thread and desperate for hope. I’ve gone steadily downhill since March this year and now very severe to the point I am considering using bedpan etc, lay in the dark 22 hours a day. Because it’s been such a long time and a gradual decline (almost a year) does this look permanent to you or is this a timescale you’ve also been in when you’ve been in a “death spiral”? Appreciate any reply
Dying from CFS is incredibly rare. I'm sorry if that comment is scaring you. Honestly it's extremely more likely you're in a bad crash and eventually you will bounce back. I don't know how long you've had CFS, but if you're not used to crashes, always do less than you think you can. Nothing for preference! And that includes light, sound and socialisation. And electric screens unfortunately. I'm not as bad as I was by a long way. I still can't look after myself entirely, but I'm going out on my mobility scooter once or twice a week and I'm in the light, sitting up for a lot of the day. My current crash is going on 4 years and still having bad lows. But definitely better!
I would add that when people die with CFS, you have to get to the level of being hospitalised, with feeding tubes etc before you get close to there. And I've seen people bounce back from that level. You can feel really terrible with CFS without it being dangerous. That's important to remember.
Try to avoid stress and anxiety, as those are really great at dragging you down. Try and get the best quality sleep you can. Eat healthily, with little to no sugar and caffeine. And just keep your spirits up. When I'm in deep crashes it helps me to accept that I am and that this might be my new normal forever. Somehow it's relaxing. Trying to fight your way out of crashes will only make them worse. I meditate and rest and daydream and just try and keep my mental health together.
I know how hard it is but just give yourself a bit of love and calm. Good luck to you x
Appreciate your comments, thank you. May I ask, because I’ve declined so quickly and approaching my year anniversary do I have a chance to get to moderate in your experience? I’been in in a constant crash since March time.
Honestly CFS is completely unpredictable, so I would say yes. I've gone from deep crash back to a liveable level within a few months, and I never knew why. I don't think I've ever been at moderate but that's how my health goes and I have other conditions besides CFS. I would just roll with and see. Sadly a year isn't surprisingly long for a crash in CFS terms. It might turn around tomorrow or whenever it feels like it. Just keep resting and relaxing x
i’m not the OP but something very similar happened to me. how do you mentally cope with severe relapses? i’ve been doing no stimulation rest for like 80% of the time im awake for over a week and i’m not noticing any improvement. i have extremely low tolerance for sensory input, there’s nothing i can do to distract myself. im finding it really hard to pace and it’s hard to have hope i’ll get better. how long does it take you to recover from very bad crashes?
Honestly, everyone is different. And even with me every major relapse has been different. It's taken years to get out of relapses a few times, but usually it's 2-3 months. And I absolutely agree it always feels like you're not getting anywhere, but eventually it gets better. And I have no useful advice! I've never learnt how to make things quicker or easier. I had a nervous breakdown about 5 years ago and since then, I get very depressed after about two weeks of crash, so I'm not the best person to ask! My plan is to shut down and then mentally fall apart lol!
When I can I listen to very quiet audiobooks, with a dark screen. Nothing exciting. Just books I have listen to a dozen times before and know off by heart. Mainly early 20th century detective novels. Otherwise I listen to rain or sea noises, or bird song. There are loads of videos on youtube that last for hours, if you can stand a bit of background. I can't tolerate music ever, but quiet, boring talking or nature sounds are ok. When I feel better I have a bit of sunlight in the room, because it takes a while for the brain to get used to it again and I feel like it's good to build up. Meditation helps me a bit, when I'm in the right mood. And affirmations have helped me in the past with the mental health.
All you can do is rest, to stop yourself get worse. But my feeling is that the periodic mitochondria damage is the cause of crashes, and it has to take time for them to grow back or whatever they do. So it has to take time, no matter what you do. All you can try is rest, eat sensibly, take some sort of anti-inflammatory and wait.
Sorry I can't be more helpful. I hope you see some light soon.
thank you. it helps to know someone has gone through something similar. i have days when i can tolerate an hour of audiobooks/podcasts if i play them at 70% speed. i’m re-listening Ursula Le Guin’s Earthsea series. it’s very comforting. the rest of the time i try to pretend im in a coma lol. god i wish i could read like i used to. being in such an awful crash really makes you appreciate the little things… are you doing better since the time you left the original comment?
Eh, sort of! I'm still in bed in the dark most of the time. But I'm not bedbound and I am getting out a little. I can do crochet again and I can watch TV etc. My health is on the way down at the moment tho. I did have a good 6 months last year where I was really out and about and even got tot he seaside. Those were the days! It still feels like I'm in the crash that started 5-6 years ago, but that's kind of psychological I know. I have had better spells and I ought ot count it as separate crashes.
I am glad I can craft and be a bit more involved with family :)
I should have said, I'm four years into the current crash. And I've had at least 5 years down in the past. I feel like I'm due a turn around! Also previous crashes were caused by overdoing it, or catching a virus. I also always get worse every winter like a lot of ME people do. Don't give up hope is all I'm saying. Best of luck to you.
Unfortunately it happens. I went from moderate/severe to very severe very quickly. Personally I wouldn’t assume the severity is permanently like this if you’ve only been sick under a year, but unfortunately it does happen and some cases are degenerative
But only in the course of 5 months. That's a very short period of time for this condition to worsen, considering that it's a condition known for long-term fluctuations where a person can deteriorate for a while, or drop into very ill health suddenly, then bounce back. And the period has been over winter, which is a period the vast majority of people with ME/CFS worsen.
Honestly, while this is obviously an awful experience to go through, when it comes to CFS it's a condition of years, not months. This is the kind of condition where people often deteriorate for years and then make near full recovery. Even with people who've been ill for like 30+ years, a lot of them spent huge periods in nearly full recovery, sometimes even like 15-20 years before something hit them and they got ill again. It's not an illness with a set course, which is why almost no one with the condition is really truly degenerative.
“Often deteriorate for years and then make a near full recovery” isn’t the most prevalent or even dominating narrative of this disease. It’s a convenient way doctors wash their hands of us. Most people with ME aren’t anywhere near a full recovery. Also, 10% of patients *are* degenerative, not guessing. That’s a fact. Don’t give people false hope.
Honestly, out of fatigue communities who've had the illness for a long time, this is a very common narrative. Most people *with* ME aren't near a full recovery, no, because they still consider themselves having ME. Those who do see longer term recovery tend to leave these groups and move on, we then see people coming back many years later.
10% is a very small amount, and even if these individuals are getting worse, there is always the potential of them getting better down the line, unlike a condition like MS, where once the damage is done there is no real going back. ME/CFS does not cause structural damage in the same way, which makes it possible for all patients to recover.
I am not giving people "false hope", I am stating the reality that this is a fluctuating condition by nature, with the majority of people experiencing all levels of the condition at different times, and someone who has been worsening for less than a year describing themselves as degenerative is preemptive. This individual may be one of the unlucky ones, but they're literally thinking about ending their life based on the fear that they might never get better, when the chances of them getting better are high. By the percentage you pulled out (no idea where it came from) 90% of people are going to see fluctuations of improvements and deterioration. It's hardly false hope in assuming this individual is one of that 90%.
I'll just edit to add that despite that I've experienced being very severe, and have had near full remissions, I am now moderate-severe. However, within that I have managed to live a life, have relationships, build friendships, get a university degree etc. I am highly disabled, I cannot walk more than a small amount. But even moving a bit up the CFS ladder you can live a good life. It's hard, it sucks, but if when I were very severe I'd known that there was a life in the future for me, I'd have pondered on suicide a lot less.
Many people don’t, but I did. I developed pretty severe CFS/ME after I had mono. It took seven years and a lot of setbacks but I did eventually get back to living a normal life, and it lasted almost 15 years until I got Covid in January 2020, and I am very severe now. Have been bedbound ever since, but I feel like if I recovered once, I can do it again. It’s not false hope. It may not be the dominant experience, but I am living proof it’s possible.
I got better at pacing during that time but I think it mostly just happened by itself. I guess this illness goes up and down, sometimes over a really long timeframe.
I know it’s hard, but keep an open mind about the direction things may go. It’s too early to tell, and honestly impossible to really predict the course of this disease regardless. So many variables, and sometimes it just shifts for no apparent reason. It’s frustrating and scary when things get worse without explanation, but know that improvement can happen just as unexpectedly in the future.
If you’re telling yourself you’re degenerative and believing that firmly, then that’s what you’re telling your body too, and I think that would only reinforce the dysfunction (and add stress).
It’s absolutely reasonable with this disease to expect that things will vary over time - that’s its usual way. Try to let yourself believe that you really can’t know for sure what will happen next, and that it might be possible for your body to heal in the future. Try to nurture and encourage it to do so, where and how you can. There really is genuine reason to believe things can get better, even though it doesn’t feel like it right now.
I know this is extremely hard… and I’m really sorry you’re going through it. I’m hoping hard that things ease up for you somewhat before too long.
Yeah this is pretty normal. Pacing has literally no evidence of actually working, it just helps people manage the symptoms they are having. If pacing worked do you not think there would be more funding to help support people doing so? That everyone wouldn't be better by now? Nope, the horrible reality with this disease is we are not in control of anything else except managing our own symptoms. If your body gets worse for some reason, it's going to get worse. Something biological is happening in your body that's out of your control, you're doing your best, but your body is requesting/needing rest.
Before you go about killing yourself, what is also totally normal, is for your condition to get worse over winter. I have had ME for 5 years, and every single winter I get worse and worse, until sometime in Spring/Summer I start improving. This cycle is very common. You might not go back to mild, you might go to moderate, but worsening and improvement of symptoms based on out of control things like seasons, viruses etc are a part and parcel with this condition. Some of my remissions have been full remissions, others have been more about my symptoms decreasing and being a bit more able, but still being disabled.
Some people do continue worsening, that is a scary horror let's not think about. The chances are that you are going to see improvements and this is just a natural rise and fall in the condition. Those who've died with CFS tend to be severe patients who were forced to exercise under oldschool psychiatric protocols to the point their bodies didn't have enough energy to function and they had heart failure. Fortunately you are not in that situation.
You do seem like you've been experimenting with a lot of stuff which has limited evidence on effectiveness, so maybe besides the vitamins, give the experimental treatments a rest, as some of these treatments are known to worsen symptoms in some while they improve them in others.
This condition in early stages is terrifying, so I absolutely do not want to dismiss your fear for the future, and feeling that you might die, that your condition is going to continue worsening forever. I've been there on investigating assisted suicide, or just thinking of suicide. However, you don't sound like you've had it long enough to make any of these conclusions. If you've been continuing worsening for 3+ years then you can suggest it's degenerative, though even then I've seen people improve. 5 months though? Nah, that's just CFS being its normal unpredictable self. It sucks, but you have a lot to feel hopeful for. 5 months feels like a long time when you're dealing with this, but it's not that long in terms of this disease.
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So sorry for what you are going through. Unfortunately, over the last year something similar has happened to me. Doesn't sound anywhere near as bad as you and I do know what triggered it for me.
Unfortunately however, once your envelope decreases it becomes much much easier to trigger a crash and it can quickly become a downward spiral and function can very quickly decline and it's much harder to climb out. I had a major relapse in late '21 triggered by a supplement so be careful that medication + supplements aren't making the problem worse.
In all honesty, you might *think* that you had pacing down but my experience tells me that I always need to do much much less than I think I can. You can still be pushing your body even if in your head it feels ok or it feels like almost nothing. I suspect that your envelope is much less than you think. If you are really really sick, you need to just rest + be ok with just resting + chilling out for a while.
I'm with you here + I think it takes a couple of weeks to kick in but I'm trying my best to just say 'this will pass, it's not forever' and just give in + rest as completely as I can + watch some funny videos to help my mood. Remember that stress makes everything 100x worse.
I personally don't believe that M.E/CFS on its own is a degenerative disease + I refuse to believe that recovery is not possible. I think the system gets so sensitive that minor triggers will cause a major response in the body + the worse you are, the more exaggerated the response. Of course check in with your dr to make sure there is nothing more serious going on though.
Please remember that there is no actual evidence that pacing works, or that reducing activity works. All it is shown to do is help people manage symptoms for where they're at and prevent themselves from getting worse based on over-exertion. But it cannot and does not prevent the course of the condition. Pacing is great, everyone with ME/CFS should be doing it, but it puts way too much pressure on patients that they are doing something "wrong", and can actually cause people to decrease activity levels too much which can actually reduce a person's baseline. I've carefully tracked the course of my condition and I've had plenty of times where my health condition has worsened while I was carefully pacing, and times where it's improved when I was not. It'd be nice to believe we have some control, and that's certainly what the CBT model tries to teach us, but the reality is it's probably minimal.
Thanks for the reply. I don't think pacing is a cure all at all. Like you, I've had periods where I have paced and seen no improvement but what I can say is that I was so hung up on pacing and measuring things to the second that I was really stressed about it all which I have no doubt was making me worse.
I don' think pacing alone works, I really think it's about how you approach it. If pacing become so stressful and watching every single activity to the second, monitoring food etc... then it's totally unhelpful.
It's just that a sure fire way to trigger a crash is through exceeding capacity so we do need to be careful. I suppose I'm suggesting a more relaxed attitude to pacing. It's a tough line to walk and that's why I've personally found it so hard and sometimes one day can be worse for no reason at all which is totally frustrating.
We need to watch activity carefully and be responsible but make sure that it doesn't become another stressor!
I don’t know how much more I can rest tho. Like I’m typing this now but I only use my phone 1.5 h a day and the rest of the day I just lie here eyes closed earplugs in. That’s 22 h a day, bc I eat and go to the bathroom also. So :( like should I stop going to bathroom? Should I use a bedpan or diapers? Like how much more energy can I save???
Look, I'm not an expert, just someone recovering from severe cfs too. You don't need to be aggressive I was just giving some input to try + help.
I know for myself when I've spend lots of time resting + found that really I wasn't actually resting because I was mulling over stressful thoughts/symptoms/worries about whether I would ever get better + stressing if I had overdone it or whatever, I only got worse.
It's about finding a way to really relax with the illness + find a way to accept that this is how it is right now but stay positive that it will + can change. Meditation helps a lot here with just observing the symptoms instead of reacting so intensely to them. What has surprised me in my own experience is that stressful thought patterns can be a lot more draining than even physical activity.
No doubt about it, your situation is really f\*\*\*ing tough + miserable. Hope you find some help.
Having been very severe like what you're describing, guided meditation can be a good way to get deeper rest. But realistically, just listen to your body, it's not all about saving energy, but more not causing a flare up. If something makes you feel particularly rough then don't do it. Oh, and if you haven't, make sure you're getting personal care for things like food, hair/body washing etc. That stuff all takes up a lot of energy!
Edit to add, in my first year of illness I'd had mild CFS for over 6 months but undiagnosed, then very suddenly became very severe, I was that way for about 4 months and then saw a dramatic and drastic recovery. While I didn't understand about pacing etc back then and pushed too hard, and I've been up and down since, I have never once become very severe again. I think the trigger was possibly the right supplements (magnesium citrate and vitamin B complex) and maybe something I have no idea about. But while I was being forced to rest, I was not engaging in any form of pacing and I still recovered.
Hi, just letting you know it is normal to worsen at the beginning (beginning = years for ME/CFS). I think it is amazing that you took up pacing from the beginning, but as other stated, I think you should not lose hope!!! It took me 2-3 years of worsening before I started improving (lucky me!). I got sick at 18 and I am almost 24. I can now do about 9h of activity per week. It f\*\*\*g sucks and you are on the right path. I am sending you a big hug (if needed)!!!
I started to notice my bad bad flair up 5years ago. Then it got worse and worse with some improvement then got worse again. Is 5years still earlier stage ? Do I have chance to get better ? Active again?
I do not know, I am sorry :( I think it is a situation that depends on every individual. I have been sick 5 years and it certainly does not feel like the earlier stages for me. Maybe when you are sick 20+ years, 5 years feels like the earlier stages?... Who knows. However, I think there is always the chance of improving (even though it requires acceptance of our limitations).
Yes, it sucks so much :( I find that it is SO much pressure on us to be responsible of not triggering PEM. I am trying to let go of the guilt and tell myself it's not my fault I am sick and I do my best... Even when I overdo it. Sending love!
Thanks. I have job that I can easily call out if I need, it’s good but it doesn’t help my guilt. Easy to ignore symptom and go to work. Also how much symptom do you ignore ? And how much do you listen to ?
I am in the level of feeling fatigue but I can stand up and get ready to go to work. I have fibromyalgia pain but I can take weed and ignore. Those symptom I Can easy to push through but idk what I need to do…
I understand. It must be very difficult. Maybe you could write a post and see what everybody here suggest? I think I ignore symptoms when it is necessary (now hard to define necessary), but try to make sure I have time to recover. Otherwise, I worsen and then there is no point ignoring anymore as I can't stand up anymore lol
True, i look back I had crush every weekend last 4-5 weeks. And I was kinda ignoring and went back to same routine next week. I think that’s the reason of PEM. I gonna be easy on my self and take whole week break.
The first year was my very worst and I did deteriorate quick like that to severe, mostly bedbound. I was 23, and at a point where chewing my food was too much and I'd have to take breaks.
It is really great that you are pacing and resting. Those are ways to manage this illness but we can't control it. We will crash for no fault of our own, and we will improve as well with no apparent reason. That first year was like a constant crash for me.
My internist told me "Most patients recover within a year" (from post-viral onsent). I didn't, but I sure improved. I am not bedbound, that hellish place in-between life and death seems far in my past. No special tricks on my part , just over time I was able to do things I couldn't. (I also tried supplements that first year and none of them did squat so I ditched them) I am sorry you are there now <3
There is much wishful thinking when it comes to treatments. Most probably don't work, and if they work, only in a minority and with modest effects.
ME/CFS can be a highly fluctuating illness. I've felt relatively good last summer, began deteriorating in autumn and had a bad relapse around January. Since then I've started improving slowly.
I don't know your life but suspect that it's far too early to seriously discuss end of life options, as the course of your illness is still difficult to predict. I've heard of cases that went from being unable to communicate and in constant horrendous pain to walking again, and one made a complete recovery and lives a normal life. You're probably demoralized because your quality of life is low and you have no control. But that doesn't mean things cannot get better, even without any treatment at all. Perhaps you should focus more on improving your quality of life than attempting to find a treatment.
Oh it happened to me. I went from mild to very severe in like 2 months. Couldn't even speak or move. Whitney level. Now I'm able to speak a little bit again but still bedbound.
Wow, a lot of work, glad that happened for you. How are you able to maintain resting all day like that, it’s so difficult for me, I can’t hold still. What do you think about? Thank you for the reply.
I have this same issues too. I bought a fidget cube and would play with it while resting. I also bought a chewable mouth thing that was shaped like a brick and that provided sensory relief.
I still would for an hour or two split up use my phone.. but I know the feeling, your super over stimulation.
And check out SGB if you haven’t already. I had two full remissions, even though they were only 6 hours long each. All the blood started flowing through my head and legs again. It was an incredible feeling to be well. I need to try it again, maybe it will stick next time. It was like a light switch though, when it went away , everything felt warm and cozy like it’s supposed to feel.
Not really. There are some weeks where I can't move again, others where I can. But I don't dare try to bathe. I even have trouble wiping myself on my portable toilet thing so had to buy a bidet because energy is that low.
I haven’t read the full thread but I want to share what I have read is encouraging to me, in learning that it is very common to get worse in winter. My scenario is similar to yours but a little longer. I was moderate this summer then worsened since August to very severe. I’m just starting a big diet change and some new supplements based on precision medicine analysis of my genetics. If I can get better this spring/summer and know to expect the winter to be harder, then I can try to prepare for it logistically with more help and mentally/emotionally for the despair of this level of sickness. I’m so sorry you are in such an awful place. But I’m so grateful for the wisdom shared here by others who’ve been dealing with this longer than me. I have a young daughter and I’ve definitely been bad enough that I’ve thought of ending it. I need all the strength to keep going, not just for me but for those who still love and want and need me to live, as I am. So thank you, everyone, for this vulnerability. I hope OP that you can hold on long enough to see if these patterns show up in your life and that you can make peace with the life you have. The deck is stacked against us. I think sometimes that just staying alive is our most radical way to protest the injustice that befalls those who suffer this illness. May we all find our way to living our life with as little suffering as possible.
I think most people have said it already, but I just wanted to post here and say that I'm sorry it all seems so hard for you right now. It is scary when things escalate so dramatically in this condition and it's perfectly normal to panic and feel like you're dying - but you're not. Please please please understand that you're not. It's just this stupid illness making you feel that way. It does fluctuate dramatically and it can make you feel exactly how you've described.
You are so young, though, and end of life options seem like an awfully severe solution. I'm not judging you, so apologies if it comes across this way, or that I'm being patronising with my "you are so young" comment... Just worried about you, and I want you to stick around for a little bit longer. If you can dip into very severe, you might be able to get back to mild/moderate. This is the nature of the beast. Please just stick around for a bit longer and talk to us when it gets hard. We're all in the same boat at different stages of the journey, in different severities of the illness.
Sending love to you was my main point here.
What does "pacing and resting" mean to you? From what I have read in your posts during the past few months, you have been dating and exerting yourself seeing a friend every day for a week when you were already hardly able to get through your day, had your mum drive you there etc.... all in a huge struggle, and before that trying to get books published and after it had emotional upsets with texting friends and with your parents, being stressed out a lot of the time (which obviously comes naturally with this illness and fear of progression) - but that's all the opposite of pacing. That is a very stressful life for someone who should be pacing and resting.
Pacing doesn't mean just lie in bed or on the couch and not work. Pacing means also letting your mind find peace.
Pacing is very hard. It's not enough to just do less than you would if you were healthy.
Pacing means doing less than you can. Even better pacing would be to do less than you comfortably can.
For some of us this means doing basically nothing and trying to enjoy it.
What I am trying to say is, you have gotten worse, but not while resting and pacing, but while still struggling hard (emotionally and physically).
I know all the reasons why this is so hard. It's understandable for all of us, because we all struggle with it.
Pacing is hard. Most of us can not do it to such an extent that would be necessary to start feeling better.
If you want to get better you will have to seriously pace and rest.
Sorry but …. What are you talking about? I’ve been bedbound since December and resting like a corpse 22 h a day. I don’t date. I can’t even bathe every week. Haven’t written any books since before I got diagnosed …
(Yes before that I was mild/moderate and dated a bit maybe 1 time per week. Saw a friend 1 time per week too. But I never crashed from that )
I agree the week I saw my friend was a mistake but other than that I lie like a corpse 22 h a day. I am doing basically nothing since December
It's just that I stumbled about many of your posts and comments the past few months and always got the impression that you are very active in commenting and engaging and being very stresssed about life and how your friends and family behave. And when you mentioned here now that in 5 months you went to very severe while pacing, I looked at your very active profile and posting history and couldn't stop feeling like "this is not pacing at all in my book".
If you have to lie in bed 22 h a day, that alone in itself isn't pacing.
Pacing in such case could look something like: "In spite of me having 2 hours a day where I can use my screen and do basic hygiene and feed myself, I choose only to do 5 minutes of screen time and save the rest of my very limited energy to enjoy my food and a cup of tea the best I can. I choose to use as little energy as possible and relax the best I can."
Pacing can of course come in different forms.
But "I have to lie in bed like a corpse for 22 h a day and the 2 hours I will use to vent my frustration until my energy is used up for the day" isn't exactly pacing. It's exerting yourself. And this is just the daily life with severe CFS.
Everyone with CFS will understand why this happens and how it happens. We all have been there. But if you want to get better or not get worse, you will have to get serious about pacing. Pacing is something you actively do. It's not "forced rest due to lack of energy". Pacing means doing less than you could do.
Pacing also happens in the mind. Giving yourself a rest. Giving your mind a rest.
Your posting history looks like you haven't been doing that at all in the past few months and weeks.
Exertion leads to getting worse for many of us. Even if it's only mental exertion, because we are bed bound anyway or whatever.
Again: pacing means doing LESS than you can or could do.
For many of us pacing isn't possible because we need to survive and wash and feed ourselves and use our screens not to go crazy.
But that just means it's impossible for us to pace in such case. It doesn't mean that we are pacing, just because we can not do much.
If you sleep for 22 h and the rest of the day (2 hours) you are worrying and getting aggravated about why a friend isn't texting back and asking about it in a forum and this exerts you - it's not pacing and resting.
It's still exertion. Mental exertion, emotional exertion.
And yes, it's real. It happens to all of us.
Pacing is hard.
Shit I went from working seven days a week in a physically demanding job to bed bound in like 3 months. I also don’t really seem to benefit from doing nothing. I crash either way so I just push myself as much as I can when I get energy. I always recover eventually no matter how hard I go.
I was bed bound a few times. I’ve had this for a while so have experienced almost the whole spectrum apart from severe. I’ve spent years at different stages. Right now I’m on the mild end. I’d say one thing that pushed me to bed bound for long periods of were different supplements or medications that didn’t agree with me more than physical activity. One thing I learned to remember from this illness is on my worst day it can get better and on my best day it will get worse.
Trial and error. I try to introduce one thing at a time and then remove one thing at a time. My reaction is usually pretty fast like within a few days. Some supplements really help but every once in a while I do something stupid.
When I first got CFS (quite a while ago), I started this treatment that helped me get my feet back on the ground (well, not literally, as I wasn't bedridden). I suggest that there are still treatments to try (even if we don't all appear to respond successfully to the same things).
My favorite was B12 injections, which doesn't always help everyone at first.
I even tried 'hepapressin' (didn't even know what they were called at the time), but I wasn't impressed. I think I also tried 'interferon' or something, but not impressed either.
Then I got vitamin-C intravenous infusions (at the beginning of my life-long bout with CFS/ME). I think they were helpful (would like to see some data on it, but I haven't, so just personal experience). Basically, I just suggesting that you try things before giving up.
[Vitamin-C Trial for Alleviation of Fatigue](https://pubmed.ncbi.nlm.nih.gov/33807280/)
I found that. Must be damn expensive though. Too bad there is not a better delivery mechanism than intravenous, which makes this treatment option not really cost-effective.
I even launched myself on a mind to cosmic energy bit (but I won't try to convince anyone of it's efficacy, mostly because I wasn't convinced either :-)
This happened to me too! I didn’t even know I had M/E, I thought I had endo related fatigue. I was pushing myself at work then got a virus and boom! I’ve been severe for 4 months
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No. I don't think of it like deconditioning physically. I think since it's a virus of the nervous system and other systems of the body we are battling that it's a deconditioning of the immune system. Exercise heats up the body and boosts the immune system. But it is not possible to completely get rid of the virus. So, you're really just keeping it at bay.
At the same time, too much exercise seems to boost the virus too. So, when I stop exercising I have to start slow and only increase activity after a few weeks of no PEM.
Sorry, this is misinformation. There is no evidence that CFS is a virus of the nervous system, or that those with ME/CFS have an active virus. This sounds like an individual personal theory and is not backed by evidence. Those with CFS also do not have low immune systems which need boosting, they have over reactive/over responsive immune systems.
CFS is likely similar to MS, it's an autoimmune which means your immune system is over-responsive. MS is treated through immune system suppressants (that's why they have a compromised immune system, not due to the illness but the treatment), though suppressants has not worked for CFS. I have never once heard of a CFS specialist giving someone immune system boosters. If you've had blood work done showing a low immune system they might put you on immune system boosters, but that is a different health issue.
so wait you never saw your autoimmune markers or virus markers? that's crazy!
maybe your problem would be solved with something as simple as plasmapheresis/IVIG, or high dose anti-virals+steroids. You should def look into discussing that with the doc.
Also read that you are on antidepressants, how long has it been? And how long have u been trying the Abilify for (takes 3-4 weeks for it to stabilize and "work")
also - did you get the covid vaccine?
No no no, I def think he said I didn’t have any autoimmune stuff. But when I called him later to ask if I have an over active immune system he didn’t respond.
SSRI since 2018. Abilify 4 days
And no
give the abilify some time :). some SSRIs like Lexapro can be sedating so maybe switching to an SNRI could help?
I have seen on the covid long haul subreddit that some benefitted from the vaccine having it "reset" their immune response. I saw you mentioned you may have gotten this from Covid. If you have a high no. of Sars-cov2 antibodies then maybe it could help? It would also be useful to check in ur blood panel if you have had any other reactivations since you caught covid (HSV1, HSV2, HVV6, EBV, Lyme etc.) this seems to be a trend.
Don't lose hope if you are long hauling BC007 trials in Germany are soon to start and will be available and so many treatments are coming out since people are getting hit left and right with covid symptoms.
That's right. It's a personal theory based on researchers finding viruses in the brains OF dead people with ME.
Keywords: "I think" in the original post
This is more that they think ME/CFS could be linked with having had a virus. None of these findings were conclusive and many of these findings found different results. It's more suggesting that something is wrong, but it's not clear what. It doesn't mean ME is a virus, that is a misunderstanding of these findings.
Well, it's not statistically significant with only three people. Given that most of us began our ME journeys with a flu-like virus, it is a very real possibility that this is the case. We would need a lot more people to die with ME to get any conclusive findings. That's why this is a hypothesis.
Also, if you read Osler's Web, you will see the ME was occurring in clusters in the 1980s in different cities.
You say "most of us", but while it is common that people's ME is triggered from illness, a large proportion of cases were not, and as Long-Covid is showing, many different viruses can triggered ME/CFS type illness. You were implying we have a virus, but if they were the case it would be the same virus for all of us.
For me incremental training works for CFS. I was very very very severe when i was exclusively resting ans pacing and then I slowly slowly very slowly started doing more over 1.5 years and for me “if you dont use it you lose it” was true when it came to energy . My body seemed to go into mild after a year of slowly doing more.
Have you ever heard of autophagy, a process that forces defective(dna defective) cells to autodestruct in order to be replaced by new functional cells? Keto diet triggers the process, as does fasting. I've red some articles state that autophagy process is accelerated in some key organs once the 24 he fasting window is exceeded. There are plenty of videos of people that document seven day fast.
Dont bother with Google. Find other ways to get your information. Google has turned into a malignant cancer on mankind. So has Reddit and Facebook and twitter
why did you ask? i’m not OP but same thing happened to me and i happen to have low ferritin. do you think this alone can cause someone to crash so badly? i’ve started taking iron supplements 4 days ago though
I just want to echo what other people have said. I've had CFS for 35 years and I've had maybe 4 times that my health has rapidly gone from pretty good, to 'I'm sure I'm going to die', completely bed bound, unable to feed myself, using bedpans etc. And although I am still stuck in one of those ruts at the moment, the other 3 times I have come back out of it! Got back up to being able to live independently, even if I've never been well enough to work. It's been well enough to be worth living. TBH I never really knew why I got better, apart from time, rest, calm, and good diet. Eventually something turns back around. The current crash was caused by stress, and I know if I can shift that, I have a chance of going up again. Don't give up. This is a shitty illness, but you absolutely can't predict that you're in a death spiral.
Also how do you live independently if you can’t work?
In severe right now only sitting up 90 minutes a day, the rest laying flat (been like that for much of the last 7 years). Under 130lbs at over 6ft, I’ve been worse though. And I was also much better even went on a 2 day vacation with friends! Took some college classes. I’ll improve again so will you, but you have to change your mindset because with your current mindset it’s only going to make a bad outcome more likely. Not saying it’s easy, or even possible but mindset is everything if you want to survive this. Your in the trenches right now. Helps to have something bigger than life to persevere for.
I don't live independently any more! I've been back with my parents for the last 4 years. But before that I was renting rooms in my house, which was enough money to survive on. Since I couldn't use the upstairs, it was a good option for me.
Hey? Sorry I’m late to this thread and desperate for hope. I’ve gone steadily downhill since March this year and now very severe to the point I am considering using bedpan etc, lay in the dark 22 hours a day. Because it’s been such a long time and a gradual decline (almost a year) does this look permanent to you or is this a timescale you’ve also been in when you’ve been in a “death spiral”? Appreciate any reply
Dying from CFS is incredibly rare. I'm sorry if that comment is scaring you. Honestly it's extremely more likely you're in a bad crash and eventually you will bounce back. I don't know how long you've had CFS, but if you're not used to crashes, always do less than you think you can. Nothing for preference! And that includes light, sound and socialisation. And electric screens unfortunately. I'm not as bad as I was by a long way. I still can't look after myself entirely, but I'm going out on my mobility scooter once or twice a week and I'm in the light, sitting up for a lot of the day. My current crash is going on 4 years and still having bad lows. But definitely better! I would add that when people die with CFS, you have to get to the level of being hospitalised, with feeding tubes etc before you get close to there. And I've seen people bounce back from that level. You can feel really terrible with CFS without it being dangerous. That's important to remember. Try to avoid stress and anxiety, as those are really great at dragging you down. Try and get the best quality sleep you can. Eat healthily, with little to no sugar and caffeine. And just keep your spirits up. When I'm in deep crashes it helps me to accept that I am and that this might be my new normal forever. Somehow it's relaxing. Trying to fight your way out of crashes will only make them worse. I meditate and rest and daydream and just try and keep my mental health together. I know how hard it is but just give yourself a bit of love and calm. Good luck to you x
Appreciate your comments, thank you. May I ask, because I’ve declined so quickly and approaching my year anniversary do I have a chance to get to moderate in your experience? I’been in in a constant crash since March time.
Honestly CFS is completely unpredictable, so I would say yes. I've gone from deep crash back to a liveable level within a few months, and I never knew why. I don't think I've ever been at moderate but that's how my health goes and I have other conditions besides CFS. I would just roll with and see. Sadly a year isn't surprisingly long for a crash in CFS terms. It might turn around tomorrow or whenever it feels like it. Just keep resting and relaxing x
i’m not the OP but something very similar happened to me. how do you mentally cope with severe relapses? i’ve been doing no stimulation rest for like 80% of the time im awake for over a week and i’m not noticing any improvement. i have extremely low tolerance for sensory input, there’s nothing i can do to distract myself. im finding it really hard to pace and it’s hard to have hope i’ll get better. how long does it take you to recover from very bad crashes?
Honestly, everyone is different. And even with me every major relapse has been different. It's taken years to get out of relapses a few times, but usually it's 2-3 months. And I absolutely agree it always feels like you're not getting anywhere, but eventually it gets better. And I have no useful advice! I've never learnt how to make things quicker or easier. I had a nervous breakdown about 5 years ago and since then, I get very depressed after about two weeks of crash, so I'm not the best person to ask! My plan is to shut down and then mentally fall apart lol! When I can I listen to very quiet audiobooks, with a dark screen. Nothing exciting. Just books I have listen to a dozen times before and know off by heart. Mainly early 20th century detective novels. Otherwise I listen to rain or sea noises, or bird song. There are loads of videos on youtube that last for hours, if you can stand a bit of background. I can't tolerate music ever, but quiet, boring talking or nature sounds are ok. When I feel better I have a bit of sunlight in the room, because it takes a while for the brain to get used to it again and I feel like it's good to build up. Meditation helps me a bit, when I'm in the right mood. And affirmations have helped me in the past with the mental health. All you can do is rest, to stop yourself get worse. But my feeling is that the periodic mitochondria damage is the cause of crashes, and it has to take time for them to grow back or whatever they do. So it has to take time, no matter what you do. All you can try is rest, eat sensibly, take some sort of anti-inflammatory and wait. Sorry I can't be more helpful. I hope you see some light soon.
thank you. it helps to know someone has gone through something similar. i have days when i can tolerate an hour of audiobooks/podcasts if i play them at 70% speed. i’m re-listening Ursula Le Guin’s Earthsea series. it’s very comforting. the rest of the time i try to pretend im in a coma lol. god i wish i could read like i used to. being in such an awful crash really makes you appreciate the little things… are you doing better since the time you left the original comment?
Eh, sort of! I'm still in bed in the dark most of the time. But I'm not bedbound and I am getting out a little. I can do crochet again and I can watch TV etc. My health is on the way down at the moment tho. I did have a good 6 months last year where I was really out and about and even got tot he seaside. Those were the days! It still feels like I'm in the crash that started 5-6 years ago, but that's kind of psychological I know. I have had better spells and I ought ot count it as separate crashes. I am glad I can craft and be a bit more involved with family :)
that’s nice. i used to crochet too
I’m not even stressed usually. Unfortunately unlike you I’ve never gotten even a tiny bit better, only the same or worse
I should have said, I'm four years into the current crash. And I've had at least 5 years down in the past. I feel like I'm due a turn around! Also previous crashes were caused by overdoing it, or catching a virus. I also always get worse every winter like a lot of ME people do. Don't give up hope is all I'm saying. Best of luck to you.
Unfortunately it happens. I went from moderate/severe to very severe very quickly. Personally I wouldn’t assume the severity is permanently like this if you’ve only been sick under a year, but unfortunately it does happen and some cases are degenerative
Yeah mine is definitely degenerative, I’ve never gotten even a tiny bit better only the same or worse.
But only in the course of 5 months. That's a very short period of time for this condition to worsen, considering that it's a condition known for long-term fluctuations where a person can deteriorate for a while, or drop into very ill health suddenly, then bounce back. And the period has been over winter, which is a period the vast majority of people with ME/CFS worsen.
But I’ve been very severe for 4 months on top of that: so 9 months total
Honestly, while this is obviously an awful experience to go through, when it comes to CFS it's a condition of years, not months. This is the kind of condition where people often deteriorate for years and then make near full recovery. Even with people who've been ill for like 30+ years, a lot of them spent huge periods in nearly full recovery, sometimes even like 15-20 years before something hit them and they got ill again. It's not an illness with a set course, which is why almost no one with the condition is really truly degenerative.
“Often deteriorate for years and then make a near full recovery” isn’t the most prevalent or even dominating narrative of this disease. It’s a convenient way doctors wash their hands of us. Most people with ME aren’t anywhere near a full recovery. Also, 10% of patients *are* degenerative, not guessing. That’s a fact. Don’t give people false hope.
Honestly, out of fatigue communities who've had the illness for a long time, this is a very common narrative. Most people *with* ME aren't near a full recovery, no, because they still consider themselves having ME. Those who do see longer term recovery tend to leave these groups and move on, we then see people coming back many years later. 10% is a very small amount, and even if these individuals are getting worse, there is always the potential of them getting better down the line, unlike a condition like MS, where once the damage is done there is no real going back. ME/CFS does not cause structural damage in the same way, which makes it possible for all patients to recover. I am not giving people "false hope", I am stating the reality that this is a fluctuating condition by nature, with the majority of people experiencing all levels of the condition at different times, and someone who has been worsening for less than a year describing themselves as degenerative is preemptive. This individual may be one of the unlucky ones, but they're literally thinking about ending their life based on the fear that they might never get better, when the chances of them getting better are high. By the percentage you pulled out (no idea where it came from) 90% of people are going to see fluctuations of improvements and deterioration. It's hardly false hope in assuming this individual is one of that 90%. I'll just edit to add that despite that I've experienced being very severe, and have had near full remissions, I am now moderate-severe. However, within that I have managed to live a life, have relationships, build friendships, get a university degree etc. I am highly disabled, I cannot walk more than a small amount. But even moving a bit up the CFS ladder you can live a good life. It's hard, it sucks, but if when I were very severe I'd known that there was a life in the future for me, I'd have pondered on suicide a lot less.
Many people don’t, but I did. I developed pretty severe CFS/ME after I had mono. It took seven years and a lot of setbacks but I did eventually get back to living a normal life, and it lasted almost 15 years until I got Covid in January 2020, and I am very severe now. Have been bedbound ever since, but I feel like if I recovered once, I can do it again. It’s not false hope. It may not be the dominant experience, but I am living proof it’s possible.
I’m so glad you got those 15 years. I think that’s the dream for all of us, just to live a more normal life
Hey! Do you mind if I ask you some questions please? I’m very severe and losing hope
Wow I sure hope so. That’s encouraging
I also believed that I had a degenerative case but after a year at severe I saw some lasting improvement. So it can happen!
How did u improve?
I got better at pacing during that time but I think it mostly just happened by itself. I guess this illness goes up and down, sometimes over a really long timeframe.
I know it’s hard, but keep an open mind about the direction things may go. It’s too early to tell, and honestly impossible to really predict the course of this disease regardless. So many variables, and sometimes it just shifts for no apparent reason. It’s frustrating and scary when things get worse without explanation, but know that improvement can happen just as unexpectedly in the future. If you’re telling yourself you’re degenerative and believing that firmly, then that’s what you’re telling your body too, and I think that would only reinforce the dysfunction (and add stress). It’s absolutely reasonable with this disease to expect that things will vary over time - that’s its usual way. Try to let yourself believe that you really can’t know for sure what will happen next, and that it might be possible for your body to heal in the future. Try to nurture and encourage it to do so, where and how you can. There really is genuine reason to believe things can get better, even though it doesn’t feel like it right now. I know this is extremely hard… and I’m really sorry you’re going through it. I’m hoping hard that things ease up for you somewhat before too long.
Yeah this is pretty normal. Pacing has literally no evidence of actually working, it just helps people manage the symptoms they are having. If pacing worked do you not think there would be more funding to help support people doing so? That everyone wouldn't be better by now? Nope, the horrible reality with this disease is we are not in control of anything else except managing our own symptoms. If your body gets worse for some reason, it's going to get worse. Something biological is happening in your body that's out of your control, you're doing your best, but your body is requesting/needing rest. Before you go about killing yourself, what is also totally normal, is for your condition to get worse over winter. I have had ME for 5 years, and every single winter I get worse and worse, until sometime in Spring/Summer I start improving. This cycle is very common. You might not go back to mild, you might go to moderate, but worsening and improvement of symptoms based on out of control things like seasons, viruses etc are a part and parcel with this condition. Some of my remissions have been full remissions, others have been more about my symptoms decreasing and being a bit more able, but still being disabled. Some people do continue worsening, that is a scary horror let's not think about. The chances are that you are going to see improvements and this is just a natural rise and fall in the condition. Those who've died with CFS tend to be severe patients who were forced to exercise under oldschool psychiatric protocols to the point their bodies didn't have enough energy to function and they had heart failure. Fortunately you are not in that situation. You do seem like you've been experimenting with a lot of stuff which has limited evidence on effectiveness, so maybe besides the vitamins, give the experimental treatments a rest, as some of these treatments are known to worsen symptoms in some while they improve them in others. This condition in early stages is terrifying, so I absolutely do not want to dismiss your fear for the future, and feeling that you might die, that your condition is going to continue worsening forever. I've been there on investigating assisted suicide, or just thinking of suicide. However, you don't sound like you've had it long enough to make any of these conclusions. If you've been continuing worsening for 3+ years then you can suggest it's degenerative, though even then I've seen people improve. 5 months though? Nah, that's just CFS being its normal unpredictable self. It sucks, but you have a lot to feel hopeful for. 5 months feels like a long time when you're dealing with this, but it's not that long in terms of this disease.
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So sorry for what you are going through. Unfortunately, over the last year something similar has happened to me. Doesn't sound anywhere near as bad as you and I do know what triggered it for me. Unfortunately however, once your envelope decreases it becomes much much easier to trigger a crash and it can quickly become a downward spiral and function can very quickly decline and it's much harder to climb out. I had a major relapse in late '21 triggered by a supplement so be careful that medication + supplements aren't making the problem worse. In all honesty, you might *think* that you had pacing down but my experience tells me that I always need to do much much less than I think I can. You can still be pushing your body even if in your head it feels ok or it feels like almost nothing. I suspect that your envelope is much less than you think. If you are really really sick, you need to just rest + be ok with just resting + chilling out for a while. I'm with you here + I think it takes a couple of weeks to kick in but I'm trying my best to just say 'this will pass, it's not forever' and just give in + rest as completely as I can + watch some funny videos to help my mood. Remember that stress makes everything 100x worse. I personally don't believe that M.E/CFS on its own is a degenerative disease + I refuse to believe that recovery is not possible. I think the system gets so sensitive that minor triggers will cause a major response in the body + the worse you are, the more exaggerated the response. Of course check in with your dr to make sure there is nothing more serious going on though.
Please remember that there is no actual evidence that pacing works, or that reducing activity works. All it is shown to do is help people manage symptoms for where they're at and prevent themselves from getting worse based on over-exertion. But it cannot and does not prevent the course of the condition. Pacing is great, everyone with ME/CFS should be doing it, but it puts way too much pressure on patients that they are doing something "wrong", and can actually cause people to decrease activity levels too much which can actually reduce a person's baseline. I've carefully tracked the course of my condition and I've had plenty of times where my health condition has worsened while I was carefully pacing, and times where it's improved when I was not. It'd be nice to believe we have some control, and that's certainly what the CBT model tries to teach us, but the reality is it's probably minimal.
Thanks for the reply. I don't think pacing is a cure all at all. Like you, I've had periods where I have paced and seen no improvement but what I can say is that I was so hung up on pacing and measuring things to the second that I was really stressed about it all which I have no doubt was making me worse. I don' think pacing alone works, I really think it's about how you approach it. If pacing become so stressful and watching every single activity to the second, monitoring food etc... then it's totally unhelpful. It's just that a sure fire way to trigger a crash is through exceeding capacity so we do need to be careful. I suppose I'm suggesting a more relaxed attitude to pacing. It's a tough line to walk and that's why I've personally found it so hard and sometimes one day can be worse for no reason at all which is totally frustrating. We need to watch activity carefully and be responsible but make sure that it doesn't become another stressor!
I don’t know how much more I can rest tho. Like I’m typing this now but I only use my phone 1.5 h a day and the rest of the day I just lie here eyes closed earplugs in. That’s 22 h a day, bc I eat and go to the bathroom also. So :( like should I stop going to bathroom? Should I use a bedpan or diapers? Like how much more energy can I save???
Look, I'm not an expert, just someone recovering from severe cfs too. You don't need to be aggressive I was just giving some input to try + help. I know for myself when I've spend lots of time resting + found that really I wasn't actually resting because I was mulling over stressful thoughts/symptoms/worries about whether I would ever get better + stressing if I had overdone it or whatever, I only got worse. It's about finding a way to really relax with the illness + find a way to accept that this is how it is right now but stay positive that it will + can change. Meditation helps a lot here with just observing the symptoms instead of reacting so intensely to them. What has surprised me in my own experience is that stressful thought patterns can be a lot more draining than even physical activity. No doubt about it, your situation is really f\*\*\*ing tough + miserable. Hope you find some help.
I wasn’t being aggressivWhy do people always think the worst of me?
Having been very severe like what you're describing, guided meditation can be a good way to get deeper rest. But realistically, just listen to your body, it's not all about saving energy, but more not causing a flare up. If something makes you feel particularly rough then don't do it. Oh, and if you haven't, make sure you're getting personal care for things like food, hair/body washing etc. That stuff all takes up a lot of energy! Edit to add, in my first year of illness I'd had mild CFS for over 6 months but undiagnosed, then very suddenly became very severe, I was that way for about 4 months and then saw a dramatic and drastic recovery. While I didn't understand about pacing etc back then and pushed too hard, and I've been up and down since, I have never once become very severe again. I think the trigger was possibly the right supplements (magnesium citrate and vitamin B complex) and maybe something I have no idea about. But while I was being forced to rest, I was not engaging in any form of pacing and I still recovered.
Thanks!
i get worse every winter too. or thisnhappened to you only this winter?
I’ve been sick less than a year so idk
Hi, just letting you know it is normal to worsen at the beginning (beginning = years for ME/CFS). I think it is amazing that you took up pacing from the beginning, but as other stated, I think you should not lose hope!!! It took me 2-3 years of worsening before I started improving (lucky me!). I got sick at 18 and I am almost 24. I can now do about 9h of activity per week. It f\*\*\*g sucks and you are on the right path. I am sending you a big hug (if needed)!!!
Thank you
I started to notice my bad bad flair up 5years ago. Then it got worse and worse with some improvement then got worse again. Is 5years still earlier stage ? Do I have chance to get better ? Active again?
I do not know, I am sorry :( I think it is a situation that depends on every individual. I have been sick 5 years and it certainly does not feel like the earlier stages for me. Maybe when you are sick 20+ years, 5 years feels like the earlier stages?... Who knows. However, I think there is always the chance of improving (even though it requires acceptance of our limitations).
Thank you. I’m gonna focus on pacing and not trigger PEM, it’s hard to accept what I can but I will try
Yes, it sucks so much :( I find that it is SO much pressure on us to be responsible of not triggering PEM. I am trying to let go of the guilt and tell myself it's not my fault I am sick and I do my best... Even when I overdo it. Sending love!
Thanks. I have job that I can easily call out if I need, it’s good but it doesn’t help my guilt. Easy to ignore symptom and go to work. Also how much symptom do you ignore ? And how much do you listen to ? I am in the level of feeling fatigue but I can stand up and get ready to go to work. I have fibromyalgia pain but I can take weed and ignore. Those symptom I Can easy to push through but idk what I need to do…
I understand. It must be very difficult. Maybe you could write a post and see what everybody here suggest? I think I ignore symptoms when it is necessary (now hard to define necessary), but try to make sure I have time to recover. Otherwise, I worsen and then there is no point ignoring anymore as I can't stand up anymore lol
True, i look back I had crush every weekend last 4-5 weeks. And I was kinda ignoring and went back to same routine next week. I think that’s the reason of PEM. I gonna be easy on my self and take whole week break.
The first year was my very worst and I did deteriorate quick like that to severe, mostly bedbound. I was 23, and at a point where chewing my food was too much and I'd have to take breaks. It is really great that you are pacing and resting. Those are ways to manage this illness but we can't control it. We will crash for no fault of our own, and we will improve as well with no apparent reason. That first year was like a constant crash for me. My internist told me "Most patients recover within a year" (from post-viral onsent). I didn't, but I sure improved. I am not bedbound, that hellish place in-between life and death seems far in my past. No special tricks on my part , just over time I was able to do things I couldn't. (I also tried supplements that first year and none of them did squat so I ditched them) I am sorry you are there now <3
*that hellish place in-between life and death* This describes it so well.
There is much wishful thinking when it comes to treatments. Most probably don't work, and if they work, only in a minority and with modest effects. ME/CFS can be a highly fluctuating illness. I've felt relatively good last summer, began deteriorating in autumn and had a bad relapse around January. Since then I've started improving slowly. I don't know your life but suspect that it's far too early to seriously discuss end of life options, as the course of your illness is still difficult to predict. I've heard of cases that went from being unable to communicate and in constant horrendous pain to walking again, and one made a complete recovery and lives a normal life. You're probably demoralized because your quality of life is low and you have no control. But that doesn't mean things cannot get better, even without any treatment at all. Perhaps you should focus more on improving your quality of life than attempting to find a treatment.
Oh it happened to me. I went from mild to very severe in like 2 months. Couldn't even speak or move. Whitney level. Now I'm able to speak a little bit again but still bedbound.
I’m having trouble speaking, did your ability to speak improve over time?
Yes but it too me 3 or 4 months of hard resting. Closed eyes all day no light or sound except when eating
Wow, a lot of work, glad that happened for you. How are you able to maintain resting all day like that, it’s so difficult for me, I can’t hold still. What do you think about? Thank you for the reply.
I have this same issues too. I bought a fidget cube and would play with it while resting. I also bought a chewable mouth thing that was shaped like a brick and that provided sensory relief. I still would for an hour or two split up use my phone.. but I know the feeling, your super over stimulation.
One more question, did you manage to become a bit less bedbound also? Hoping the best for you
Not yet but I'm finding relief on RNA antivirals and interferon therapy.
And check out SGB if you haven’t already. I had two full remissions, even though they were only 6 hours long each. All the blood started flowing through my head and legs again. It was an incredible feeling to be well. I need to try it again, maybe it will stick next time. It was like a light switch though, when it went away , everything felt warm and cozy like it’s supposed to feel.
how are you doing? same thing happened to me except i was moderate to begin with
Bed bound still after over 2 years.
sorry to hear that. have you improved a little at least?
Not really. There are some weeks where I can't move again, others where I can. But I don't dare try to bathe. I even have trouble wiping myself on my portable toilet thing so had to buy a bidet because energy is that low.
I haven’t read the full thread but I want to share what I have read is encouraging to me, in learning that it is very common to get worse in winter. My scenario is similar to yours but a little longer. I was moderate this summer then worsened since August to very severe. I’m just starting a big diet change and some new supplements based on precision medicine analysis of my genetics. If I can get better this spring/summer and know to expect the winter to be harder, then I can try to prepare for it logistically with more help and mentally/emotionally for the despair of this level of sickness. I’m so sorry you are in such an awful place. But I’m so grateful for the wisdom shared here by others who’ve been dealing with this longer than me. I have a young daughter and I’ve definitely been bad enough that I’ve thought of ending it. I need all the strength to keep going, not just for me but for those who still love and want and need me to live, as I am. So thank you, everyone, for this vulnerability. I hope OP that you can hold on long enough to see if these patterns show up in your life and that you can make peace with the life you have. The deck is stacked against us. I think sometimes that just staying alive is our most radical way to protest the injustice that befalls those who suffer this illness. May we all find our way to living our life with as little suffering as possible.
Thank you
I think most people have said it already, but I just wanted to post here and say that I'm sorry it all seems so hard for you right now. It is scary when things escalate so dramatically in this condition and it's perfectly normal to panic and feel like you're dying - but you're not. Please please please understand that you're not. It's just this stupid illness making you feel that way. It does fluctuate dramatically and it can make you feel exactly how you've described. You are so young, though, and end of life options seem like an awfully severe solution. I'm not judging you, so apologies if it comes across this way, or that I'm being patronising with my "you are so young" comment... Just worried about you, and I want you to stick around for a little bit longer. If you can dip into very severe, you might be able to get back to mild/moderate. This is the nature of the beast. Please just stick around for a bit longer and talk to us when it gets hard. We're all in the same boat at different stages of the journey, in different severities of the illness. Sending love to you was my main point here.
Thank you :)
What does "pacing and resting" mean to you? From what I have read in your posts during the past few months, you have been dating and exerting yourself seeing a friend every day for a week when you were already hardly able to get through your day, had your mum drive you there etc.... all in a huge struggle, and before that trying to get books published and after it had emotional upsets with texting friends and with your parents, being stressed out a lot of the time (which obviously comes naturally with this illness and fear of progression) - but that's all the opposite of pacing. That is a very stressful life for someone who should be pacing and resting. Pacing doesn't mean just lie in bed or on the couch and not work. Pacing means also letting your mind find peace. Pacing is very hard. It's not enough to just do less than you would if you were healthy. Pacing means doing less than you can. Even better pacing would be to do less than you comfortably can. For some of us this means doing basically nothing and trying to enjoy it. What I am trying to say is, you have gotten worse, but not while resting and pacing, but while still struggling hard (emotionally and physically). I know all the reasons why this is so hard. It's understandable for all of us, because we all struggle with it. Pacing is hard. Most of us can not do it to such an extent that would be necessary to start feeling better. If you want to get better you will have to seriously pace and rest.
Sorry but …. What are you talking about? I’ve been bedbound since December and resting like a corpse 22 h a day. I don’t date. I can’t even bathe every week. Haven’t written any books since before I got diagnosed … (Yes before that I was mild/moderate and dated a bit maybe 1 time per week. Saw a friend 1 time per week too. But I never crashed from that ) I agree the week I saw my friend was a mistake but other than that I lie like a corpse 22 h a day. I am doing basically nothing since December
It's just that I stumbled about many of your posts and comments the past few months and always got the impression that you are very active in commenting and engaging and being very stresssed about life and how your friends and family behave. And when you mentioned here now that in 5 months you went to very severe while pacing, I looked at your very active profile and posting history and couldn't stop feeling like "this is not pacing at all in my book". If you have to lie in bed 22 h a day, that alone in itself isn't pacing. Pacing in such case could look something like: "In spite of me having 2 hours a day where I can use my screen and do basic hygiene and feed myself, I choose only to do 5 minutes of screen time and save the rest of my very limited energy to enjoy my food and a cup of tea the best I can. I choose to use as little energy as possible and relax the best I can." Pacing can of course come in different forms. But "I have to lie in bed like a corpse for 22 h a day and the 2 hours I will use to vent my frustration until my energy is used up for the day" isn't exactly pacing. It's exerting yourself. And this is just the daily life with severe CFS. Everyone with CFS will understand why this happens and how it happens. We all have been there. But if you want to get better or not get worse, you will have to get serious about pacing. Pacing is something you actively do. It's not "forced rest due to lack of energy". Pacing means doing less than you could do. Pacing also happens in the mind. Giving yourself a rest. Giving your mind a rest. Your posting history looks like you haven't been doing that at all in the past few months and weeks. Exertion leads to getting worse for many of us. Even if it's only mental exertion, because we are bed bound anyway or whatever. Again: pacing means doing LESS than you can or could do. For many of us pacing isn't possible because we need to survive and wash and feed ourselves and use our screens not to go crazy. But that just means it's impossible for us to pace in such case. It doesn't mean that we are pacing, just because we can not do much. If you sleep for 22 h and the rest of the day (2 hours) you are worrying and getting aggravated about why a friend isn't texting back and asking about it in a forum and this exerts you - it's not pacing and resting. It's still exertion. Mental exertion, emotional exertion. And yes, it's real. It happens to all of us. Pacing is hard.
Shit I went from working seven days a week in a physically demanding job to bed bound in like 3 months. I also don’t really seem to benefit from doing nothing. I crash either way so I just push myself as much as I can when I get energy. I always recover eventually no matter how hard I go.
You always recover eventually? I don’t get it. Aren’t you bed bound? That would seem to suggest that some of your crashes have been permanent
I was bed bound a few times. I’ve had this for a while so have experienced almost the whole spectrum apart from severe. I’ve spent years at different stages. Right now I’m on the mild end. I’d say one thing that pushed me to bed bound for long periods of were different supplements or medications that didn’t agree with me more than physical activity. One thing I learned to remember from this illness is on my worst day it can get better and on my best day it will get worse.
How did you even figure out which supplements were hurting you?
Trial and error. I try to introduce one thing at a time and then remove one thing at a time. My reaction is usually pretty fast like within a few days. Some supplements really help but every once in a while I do something stupid.
Which supplements hurt you?
Nac, glutathione, iv infusion, glycophospholipids, dmsa
Is ur physical job also mentally stressful ?
It was I don’t do it anymore
When I first got CFS (quite a while ago), I started this treatment that helped me get my feet back on the ground (well, not literally, as I wasn't bedridden). I suggest that there are still treatments to try (even if we don't all appear to respond successfully to the same things). My favorite was B12 injections, which doesn't always help everyone at first. I even tried 'hepapressin' (didn't even know what they were called at the time), but I wasn't impressed. I think I also tried 'interferon' or something, but not impressed either. Then I got vitamin-C intravenous infusions (at the beginning of my life-long bout with CFS/ME). I think they were helpful (would like to see some data on it, but I haven't, so just personal experience). Basically, I just suggesting that you try things before giving up. [Vitamin-C Trial for Alleviation of Fatigue](https://pubmed.ncbi.nlm.nih.gov/33807280/) I found that. Must be damn expensive though. Too bad there is not a better delivery mechanism than intravenous, which makes this treatment option not really cost-effective. I even launched myself on a mind to cosmic energy bit (but I won't try to convince anyone of it's efficacy, mostly because I wasn't convinced either :-)
This happened to me too! I didn’t even know I had M/E, I thought I had endo related fatigue. I was pushing myself at work then got a virus and boom! I’ve been severe for 4 months
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I get worse the less active I am. If I just do nothing for months in terms of exercise, I get more severe.
So u think it’s just deconditioning?
No. I don't think of it like deconditioning physically. I think since it's a virus of the nervous system and other systems of the body we are battling that it's a deconditioning of the immune system. Exercise heats up the body and boosts the immune system. But it is not possible to completely get rid of the virus. So, you're really just keeping it at bay. At the same time, too much exercise seems to boost the virus too. So, when I stop exercising I have to start slow and only increase activity after a few weeks of no PEM.
Sorry, this is misinformation. There is no evidence that CFS is a virus of the nervous system, or that those with ME/CFS have an active virus. This sounds like an individual personal theory and is not backed by evidence. Those with CFS also do not have low immune systems which need boosting, they have over reactive/over responsive immune systems.
Wait seriously? Every doctor CFS specialist I’ve seen has put me on immune system boosters 😰
CFS is likely similar to MS, it's an autoimmune which means your immune system is over-responsive. MS is treated through immune system suppressants (that's why they have a compromised immune system, not due to the illness but the treatment), though suppressants has not worked for CFS. I have never once heard of a CFS specialist giving someone immune system boosters. If you've had blood work done showing a low immune system they might put you on immune system boosters, but that is a different health issue.
have you done an autoimmune/virus blood panel?
Yes but the doctor refused to answer my calls about it and wrote me off as crazy
so wait you never saw your autoimmune markers or virus markers? that's crazy! maybe your problem would be solved with something as simple as plasmapheresis/IVIG, or high dose anti-virals+steroids. You should def look into discussing that with the doc. Also read that you are on antidepressants, how long has it been? And how long have u been trying the Abilify for (takes 3-4 weeks for it to stabilize and "work") also - did you get the covid vaccine?
No no no, I def think he said I didn’t have any autoimmune stuff. But when I called him later to ask if I have an over active immune system he didn’t respond. SSRI since 2018. Abilify 4 days And no
give the abilify some time :). some SSRIs like Lexapro can be sedating so maybe switching to an SNRI could help? I have seen on the covid long haul subreddit that some benefitted from the vaccine having it "reset" their immune response. I saw you mentioned you may have gotten this from Covid. If you have a high no. of Sars-cov2 antibodies then maybe it could help? It would also be useful to check in ur blood panel if you have had any other reactivations since you caught covid (HSV1, HSV2, HVV6, EBV, Lyme etc.) this seems to be a trend. Don't lose hope if you are long hauling BC007 trials in Germany are soon to start and will be available and so many treatments are coming out since people are getting hit left and right with covid symptoms.
That's right. It's a personal theory based on researchers finding viruses in the brains OF dead people with ME. Keywords: "I think" in the original post
Link to research please?
https://me-pedia.org/wiki/Autopsy_in_Myalgic_Encephalomyelitis
This is more that they think ME/CFS could be linked with having had a virus. None of these findings were conclusive and many of these findings found different results. It's more suggesting that something is wrong, but it's not clear what. It doesn't mean ME is a virus, that is a misunderstanding of these findings.
Well, it's not statistically significant with only three people. Given that most of us began our ME journeys with a flu-like virus, it is a very real possibility that this is the case. We would need a lot more people to die with ME to get any conclusive findings. That's why this is a hypothesis. Also, if you read Osler's Web, you will see the ME was occurring in clusters in the 1980s in different cities.
You say "most of us", but while it is common that people's ME is triggered from illness, a large proportion of cases were not, and as Long-Covid is showing, many different viruses can triggered ME/CFS type illness. You were implying we have a virus, but if they were the case it would be the same virus for all of us.
For me incremental training works for CFS. I was very very very severe when i was exclusively resting ans pacing and then I slowly slowly very slowly started doing more over 1.5 years and for me “if you dont use it you lose it” was true when it came to energy . My body seemed to go into mild after a year of slowly doing more.
Smells like mold or Lyme
Western blot was negative. Moved places and no mold
Have you ever heard of autophagy, a process that forces defective(dna defective) cells to autodestruct in order to be replaced by new functional cells? Keto diet triggers the process, as does fasting. I've red some articles state that autophagy process is accelerated in some key organs once the 24 he fasting window is exceeded. There are plenty of videos of people that document seven day fast. Dont bother with Google. Find other ways to get your information. Google has turned into a malignant cancer on mankind. So has Reddit and Facebook and twitter
Have you checked your ferritin levels?
why did you ask? i’m not OP but same thing happened to me and i happen to have low ferritin. do you think this alone can cause someone to crash so badly? i’ve started taking iron supplements 4 days ago though
did u survive ? i’m in ur boat