I've had it 8 years, started very mild and have gradually declined into severe. I've never had periods of improvement. My father had it 7 years, started at his worst (severe during acute mono then moderate after) and only ever stayed the same or improved. After 7 years he was back to normal and never got ME/CFS again.
The most common trajectory is fluctuating severity. People get knocked down by PEM, illness, etc and then gradually recover, then something happens and they drop again.
The one thing for certain is that you can't be certain what your own trajectory will be. Maybe future diagnostic tests will be designed that can determine what the most likely outcome is, but for now, it's a lottery. Sometimes people spontaneously improve significantly or even recover fully. We don't know why and can't predict it, but there's always hope it can happen, even if it's unlikely.
I had struggled with moderate ME/CFS for two decades, but experienced an almost full remission after moving to the San Francisco Bay Area. I was over the moon excited about it and started making all these plans, but it only lasted for two weeks because my husband brought home Covid during the omicron spike. I got Covid, too, and have been moderate-severe ever since. I pray for a miracle cure for all of us suffering.
You explained what life with CFS perfectly. I was doing okay but then I got an infection last fall and I haven't recovered. I'm hoping I will recover again. I've accepted that I most probably will never live a normal life.
Do you think your dad’s experience has affected you getting worse? My mom has fibro but is still able to work so she just kept saying to pace but also exercise, so I progressively got worse. She normalized illness so I never thought I was that bad. Even believed the doctor gaslighting me to exercise too. It sent me from mild-moderate to much more severe
I'm sorry that has been your experience. Unfortunately him having had it has made things harder for me, too, since it gave him a biased view of what's needed to recover. He started going on walks as he felt better, so he saw that as the way to improve, but him doing what was essentially GET was unlikely why he improved. He most likely was improving on his own and that's why he could go on walks. But because he saw it as the reason he got better, he pushed that expectation on me.
It also led to him not understanding that I was getting worse and why. He finally has gotten better about it the past few weeks, but for months after I moved in with him he didn't provide the level of help I needed. He kept insisting I need to find and treat the root cause, ignoring me when I said ME/CFS isn't just a lazy diagnosis by doctors who can't be bothered to do tests (which is how it was viewed when he had it). It is a legitimate diagnosis that is managed by pacing. By not seeing it as legitimate, he didn't value the importance of pacing, leaving me with no choice but to get PEM in order to do basic things like prepare food.
My mom forced me to do the same. I remember early on crying every day from the pain of exercise. I started to get better around that time so everyone thinks that same logic applies now. And that I’m lazy and making myself stay sick by not exercising. They won’t even look into me/cfs, though my mom saw a video on it once and got excited saying that’s what she has too. I’m not sure if my mom is a narcissist or just emotionally immature. Still she won’t actually read about this illness to try to understand my situation. She avoids me because I’m probably “too depressing” for her, I’m lucky I can still crawl upstairs to eat microwave meals.
No one is more wrong about this than people who supposedly had it and got better. Really annoying people out there on YouTube and stuff turning this into a lifestyle brand and promoting exercise and CBT when that has nothing to do with recovery, only makes you worse. Doctors assume I am deconditioned and lazy too but I know for a fact that a decondotioned person on bed rest is still able to eventually get up and do things once their illness is over.
It is really frustrating when people can't be bothered to actually do research. You'd think they'd take the initiative to learn about a debilitating illness affecting someone close to them. Also doesn't help that a lot of websites still have outdated and harmful information, so even if some do research, they may still end up with an incorrect understanding.
I don't think everyone who gets better only 'supposedly' has it. I can't remember where I saw the figure, but I think like 5% of people with it do fully recover. The issue comes from the fact that most of those who recover from ME/CFS likely did it independently of any treatment they tried, but they believe it was the treatment and assume it will work for everyone. Ignoring the experience of others due to their own, different experience is the real problem. That and the fact that some doctors do misdiagnose people with it or some people misdiagnose themselves, muddying the waters. Or they intentionally lie, like grifters do. But still, not everyone who fully recovers is a misdiagnosis. It can happen, just rarely, and likely not for the reason people think.
I didn’t assume it was a misdiagnosis because he recovered. I mention that as a possibility because it’s strange to see someone claim exercise is a cure if they actually has me/cfs with the PEM and everything. That said I know lots of people are only mild and still work. Or they don’t ever get worse than moderate. Or they do eventually get better and start to do more so they think the doing more is the cure. Hell, even I “got better” and assumed walking helped. In reality it was only a remission.
Ah, gotcha. I just see recovery denial here a lot, where people are quick to say that all recoveries are a misdiagnosis, which is understandable but doesn't seem to true scientifically. I do think that people who get better from exercise were already getting better on their own, or else they would get stopped by PEM. That's why I say my father likely walked because he got better, not the other way around.
I think the recovery rates could be a lot better if like MS and AS this condition was caught much sooner and treated. Even if the treatment is mainly resting and avoiding crashes. It’s common sense really, but I think the stigma is so severe that a lot of people like me go 10 years or more still being told to push out of the “rut” and exercise more. Our medical system is a total joke.
CFS for 27 years.
Got a virus in 1997. Lead to CFS. Was bad at the start. Pushed myself to finish uni. Got to a point where I worked full time.
End of 2016 I got Influenza A and went downhill big time.
End of 2022 I had to leave a part time job due to becoming bedbound.
Now am housebound, but only in bed when I'm crashing.
Due to better understanding CFS I don't push through. So, my symptoms are less than I had at the start. But, i also do way less. So, it is debatable whether my quality of life is better or worse.
Oh my god — I could have written this myself!
I’ve been sick about that long. Kept pushing through uni, then work, got the flu and pneumonia really bad in 2019. Thought I’d go back to part time work but struggled and finally bit the bullet and gave up work. Best decision ever!
I can actually pace properly and listen to my body without thinking “I just need to get through this workday and *then* I’ll rest”. I used to have a guilt complex about it and now I just don’t.
I would also say my quality of life is much improved (due to pacing and rest) but if I tried doing half as much as I used to, I’d probably collapse in a heap.
this post made me realise how long i've been with this horrible illness... i was going to say "same, it's only been a few months for me too". few months? it's been 3 years. sometimes i forget that i lost a good chunk of my teenage years to ME/CFS.
i feel this. im 25 and still often resent that my high school years were stolen from me like that. CFS was one of several issues that contributed but it's a toss up for being the worst next to bipolar depression. and in reality, if i didnt have ME/CFS, i most likely would have been a LOT less severely depressed too 😭
this may sound selfish but i'm glad to know i'm not the only one who feels this way. thank you for sharing this with me.
depression is another type of hell, i'm really sorry you suffer from it aswell. lots of love ❤️
Yeah I got it at 14 and now I’m an adult with no high school diploma or anything really. I can’t take classes anymore (I tried for a long time) WTF am I supposed to do? 10 years of bullshit now to look ahead to more bullshit
That's really hard, dealing with both bipolar depression and ME/CFS. I've had bipolar since I was 7, and it went untreated until I was 18. Made for an extremely miserable childhood. After a total mental breakdown I finally got the bipolar medicated and was so happy to be able to live my life fully. Six months later I got ME/CFS due to negative side effects from those bipolar meds. Just can't win. I did finally find meds that don't cause me issues and have been depression-free for over a year, which has made being severe much more bearable.
i feel that 😭 im so sorry you reacted so badly. ive done so well on my antipsychotics/mood stabilizers, its always wild to me to remember how awful they are for so many people 😭 im glad you have ur mood symptoms under control but im sorry you got CFS in exchange 😔
i can't be sure when my hypomania first emerged but i was actively suicidal by 10 so i definitely at least had the depression stuff early, if not full-on bipolar 2 😭 i was 15ish before i got onto antidepressants and probably 17 before anyone figured out it was bipolar and that SSRIs on their own really weren't great for me 💀 but once we got me on seroquel we killed two birds with one stone bc it dealt w my bipolar mood symptoms & hallucinations AND my ME/CFS related insomnia 😅 ive heard some BAD stories from others who used seroquel, but ive been lucky to have it help me IMMENSELY for the last 7-8 years now 😭
though admittedly it was a BITCH at first on the lower doses (which often have stronger side effects than high doses in many ppl for some reason??). i started seroquel a couple months before i dropped out of school formally and i was so sleepy i was lucky to get through more than one class period every few days. i physically couldn't stay awake no matter what I tried, to the point my first period history teacher didnt ever even get mad at me bc she could tell i was TRYING and couldn't help it. like you KNOW it's bad when you show up to a given class maybe every other day, sleep through the whole thing, and literally never finish any classwork or homework, and all the teacher does is occasionally ask if you're okay/check in to be sure you arent dead 💀💀 she never ONCE got after me for it. absolute angel 😭
I wish doctors were better at recognizing bipolar in children. I think the usual onset is around 20, so I get why they might not notice, but that means those of us who do get it young have to struggle with it for a long time without even understanding why we're suffering so much.
Medication can be a real gamble, and I understand why people can be apprehensive about psychiatric medication. But honestly, I was magnitudes more miserable with untreated bipolar than I am now with severe ME. It really sucks I got sick from my meds. I should have stopped taking them sooner, but I know why I didn't. I desperately wanted to not be depressed anymore. I can't regret trying the medication, since I'd be dead if I didn't have my bipolar under control. But it didn't have to be like this and I wish it wasn't.
I do believe though that even if I didn't take those meds, it probably would have been something else that eventually triggered ME, like covid. I think I inherited a risk factor from my father, who also got it in his 20s, that made me predisposed to this happening.
a lot of my issue was also not really feeling like i could tell my parents what was going on until things got so bad i had no choice tbf, so i wasn't ever seeing drs except for yearly checkups. that said, i agree w u, and this is much of why i think part of well child visits should involve basic psych evals without parents present :/ that's becoming pretty normal with teens but i feel like it should begin at LEAST at normal puberty initial onset age, like 8ish.
i am glad you at least have better quality of life now than before, but i also wish it didn't have to be a trade off. you deserve for BOTH issues to be well controlled 😔 i feel you on the inevitability too.
I'm light-years worse. Though, I didn't know what it was for 5 years. So, I caused myself to crash repeatedly because I did not know that it could make my baseline worse. Hell, I did not know I had a baseline. Now, my baseline feels like a rough crash did back then.
I was told to do GET so my first couple of years were a roller coaster.
Long term I'm prone to relapses from adverse events, but my baseline has slowly trended up over time from severe to moderate. I've never made it back to how well I was just before GET crashed me though.
I often wonder how my life would have turned out if I had a doctor at the 1 year mark who said "you have ME/CFS, you need to learn pacing" instead of "it's Postviral syndrome, you need to do more GET and CBT".
If he had called it by the right name I would have found the correct information myself. It just never occurred to me that a doctor could be giving out disastrous advice.
Graded Exercise Therapy. the gist is basically just gradually intensified exercises designed to increase your exercise tolerance and fitness level. basically just exercise training designed to gradually raise the bar as you meet new goals.
until the last like. 2-3 years i think? it was the only formally "recommended" ME/CFS treatment. it's so atrociously damaging for almost all of us, they finally stopped recommending it, after YEARS of ME/CFS activists begging them to stop pushing us all into something so harmful.
The thing is, for MOST conditions with chronic fatigue as a SYMPTOM, GET is actually a great thing bc the issue is deconditioning, and in most these cases, those people don't expect PEM (Post Exertional Malaise), so even if they feel kinda awful after exercise at first (much like someone who just lives a sedentary lifestyle deciding to start working out would), they gradually improve and soon begin to feel BETTER after exercise, not worse.
for ME/CFS sufferers, we will gradually feel worse after each workout no matter how "conditioned" or "fit" we get, thanks to PEM (which is a diagnostic requirement for ME/CFS and is what sets us apart from most other fatigue sufferers). exercising causes us to crash, not improve, and can even PERMANENTLY worsen our baseline. any dr who actually understands ME/CFS will tell you pacing and avoiding triggers (including strenuous exercise!) is the way to go.
I didn't mean it that way. I was wondering whether age is negatively impacting CFS, as in what specifically might trigger worsening CFS symptoms if you pace correctly. I guess it's longing for control over an aching body heh.
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Okay. I have had CFS for five months now and try to gauge the risk of worsening as well as the chance of betterment. My clueless doctors as well as the painfully slow time my diagnoses are processed into further steps aren't very encouraging, hence I am here. Though it seems less of a treatment and more of a restructuring of your own life to rest as much as possible, while at the same time being rather powerless to circumstance.
It truly feels that way, aging doubly, living occasionally. Yet living, huh. I am carefully optimistic when it comes to scientific progress regarding this illness. Not very optimistic when it comes to social progress, development of healthcare and living conditions. It's like a race, almost, here in Germany at least. But if CFS has gotten me to do one thing it's to focus on the present at all times, in a nurturing, deliberate kind of way. Although I'm sure my outlook will be vastly difference in times to come. Funnily it's my partner that is the sole reason for me to even think of making plans. Otherwise I would just isolate for a long, long time, probably.
Either way, wish you the best of health, out looks and, rather than bearable moments, moments of true happiness. :)
I would strongly suggest at your age that you try — what’s it called? The aggressive resting thing where you conserve your energy as much as possible? I think that’s one of the few things that’s helped a fair number of people improve their baseline.
I’m trying it now myself. I’ve had this blasted disease for 18 years now, and I’ve declared 2024 the year of trying everything I can! I’ve gotten a lot of ideas from this subreddit, actually.
I started out pretty mild (I was under a huge amount of stress at school and just randomly broke out in Shingles, which brought on the ME) and somehow kept teaching high school full-time for eight more years, then left to care for my mom for four years, and then came back and had to teach a few more years before I could buy some years and retire early. Those last two years really did me in, and now I’m moderate to severe most of time.
But at least now I’m retired, I have almost no stress, and life is good other than being miserable lol.
Damn. Thanks for your story. I have the fortune that I just finished school. I lost my job summer of 2022 because due to, well, long covid I was unable to walk for three months, and no doctor could explain to me why. It also went away on its own with no reason. Then I didn't dare to tackle another job due to the ever since then quiet foot pain. Felt a bit unlucky (lol).
Finished school, did a year off. For travelling, for writing (my novels) and finally moving out end of 2024. Instead, I caught covid again, or the flu, or whatever, either way, it never left me since first week of January, but this time... for real. Struggling with my long-distance relationship and pretty much unable to write too, but at least it happened when I had time, I suppose.
I still want to move out, and badly, too, mostly because I worry about reinfecting myself with covid in winter here, what with my "you can't avoid catching viruses so might as well get it over with" mother and my 4 year old "let's bring home every conceivable virus possible" nephew in the house. But of course with a lot more worries on my plate. Very very careful about not overdoing it, especially with my anxiety disorder and autism making it hard to not overstimulate quickly. I crashed a few times already, but always minor, like one or two weeks of rest and it was fine. First time now that it takes longer. I do not want to crash again.
Rest is king. If I rest, I can stay dynamic, if I stay dynamic, I avoid pain and, most of all maybe, utter isolation. It's a constant balance game and as long as society will help me out with the bare minimum of existence, I will be able to keep doing it for a long time I'm sure.
Hearing your story, I am very much humbled by my fortunate circumstances. I wish you the best of moments.
I’ve had it 35 years with a post viral (EBV) onset. First year I was totally bedridden. I recovered but couldn’t exercise at all and still needed to rest loads. I didn’t know I had it then. I got sinusitis all the time (looking back probably PEM driven). In 2018, a bit overweight and out of shape I thought I would start exercising and that tipped me over the edge plus a covid infection and a HSV2 skin infection so that I was bedridden again in 2023.
I’m slowly climbing back up - but mine relapses and remits. May was awful - I spent 2 weeks in bed but I’m slowly recovering some baseline now and feeling a bit more positive.
Probably bc the first few years it can be difficult to accept you’re really ill and continue to do things you used to be able to do and sadly continue to decline without understanding why.
because it was many years ago and diagnoses were almost impossible to get. it took my 2 years of pushing and pushing (per my doctors orders) instead of resting. i saw dozens of doctors and no one would even test me thoroughly to rule stuff out and by the time they had figured it out. i was also forced into GET. it’s not always a choice, there was zero awareness 10 years ago
i don’t think we should censor very severe people’s experiences because they’re not pretty and make mild people uncomfortable, and people should understand what risk they’re in for so they can hopefully prevent that it’ll happen to them
I don’t think they were trying to censor you. Based on other comments they’ve made, I think they are looking for anyway to have some modicum of control over their situation and not progress in severity. I think they are trying to ask what caused you to worsen. It was just asked a bit awkwardly.
I think I also read that you’re only 5 months in to your journey with this horrid illness.
Many of us can remember grasping at straws and looking for any sense of control we could have over our progression in the beginning of dealing with this. I think that’s really understandable.
Many of us have also had people in our lives who blame us for not doing the right things to get better, so it’s understandable that people may bristle when you ask why they progressed. You may not intend it in such a way, but if not worded carefully it can be received as “What did you do wrong that caused this to happen?”
It’s a tricky subject to discuss, especially if there’s a language barrier involved.
I hope you’re one of the lucky ones and you recover. It happens for some, but isn’t the reality for many of us, no matter how well we care for ourselves <3
If you’re to have any chance, your best bet is to pace, pace, pace. Don’t push yourself. Learn to listen to your body. Watch that your heart rate doesn’t become too elevated for too long. Do what you can to increase your coping skills, as the road is often hard and long.
I’m finding some help using my Fitbit to watch my heart rate and connecting it to the Solve Together/My Data Helps app which sends me notifications as my HR becomes elevated. It lets me know how many minutes per day my HR is over 98bpm and how many "active minutes" I've had that day compared to my baseline. I can also log symptoms and treatments on it. I'm currently also trying out the free version of the Visible app, which allows for symptom tracking and checking of base level HR and HRV every morning.
I mean ultimately fault is relative. I am autistic and very direct sometimes. I have made mistakes. I have gamed a lot because I couldn't move much. Gamed too much., Now I've had headaches for two weeks straight and hope they will subside. It is... I just want a sense of control over this. Nobody is to blame. We all just want to live a bit, rather than only survive, and on top of that live in an unforgiving society when it comes to understanding chronical illness.
Fitbit is a cool advice, thanks. My main goal is to be able to write (stories), watch films, and have a bit of dynamic possibilities, be it taking a walk, meeting my partner, yoga, having sex. This illness seems very counterintuitive to fending off... well, other illnesses. It's hard to understand how much is fine. And how much is not. And hard to estimate when you already are in pain, unsure whether it will get better again or not.
I know I'm singing the old tune of newlyweds of chronic pain. Sorry, I truly don't want to waste your time. I'm just thankful for the advice.
My symptoms have improved since I was first diagnosed, but I've also made massive lifestyle changes (switched from a somewhat physical job to working from home) and am on LDN and meds for POTS. I really hope things get better for you.
Thank you! I don’t know if I have POTS but my heart rate is all over the place and I have been getting palpitations after doing something sometimes for even 30 mins after stopping. Also my legs are so weak and feel like I’ve ran 100m after just going up like 2 steps. I might look into what you’re taking see if it helps
The results from this question are going to look a little more bleak than the reality. People who improve over time are more likely to find a stable and satisfying-ish way to live (and so not be spending so much time in groups like this one) and COVID really knocked a lot of people down, who were otherwise stable or gradually improving.
This is true, and now SARS-COV-2 and SARS-COV-3 continue to infect and reinfect *billions* of people, millions of whom will get some kind of CFS.
Pretty bleak!
I've been ill for over 30 years. I've had ups and downs in that time. There have been times where I've been much better than the first year, but currently I am worse. Getting older is bound to factor in of course, but I'm still hopefully I will have better times again one day!
significantly better, not as good as a couple years ago but nowhere near as bad as when i first crashed properly (i say this bc though i had EBV when i was 8 and i was unwell on-and-off in the years afterwards, i never had a proper full-on crash until i was 13-14. i’m 23 now.)
Have had it for around 8 years. In the bigger picture it's probably gotten worse over the years, as it started very mild and is now moderate, but it stagnates a lot I feel, and it never dropped drastically. On one hand, this is an objective positive, as it means I'm not doing as bad, on the other hand, this also means I'm not really seeing it getting worse until it already happened. For the last 3 years or so, there wasn't another decrease, so I'm fairly positive I'ce reached my bottom in moderate.
While I'm unable to work, I'm thankful that I can nurture myself and maintain personal standards, and even have some spare energy to go after non-demanding hobbies. That helps a lot with my psyche.
Worse :( diagnosed 10 years ago, started moderate then gradually improved to mild/very mild. Despite having a diagnosis I had no idea what pacing was or how much damage I was doing to myself when I kept pushing through crashes - which is what happened last summer, as a result of stress. By October I was severe and have been housebound/often bedbound since then. I really really hope I can improve 😣
Worse, but I suspect I would have been milder than my starting point if I had known to pace properly in those early months. At around month 8, I had a week or two with extremely mild symptoms and if I hadn't gone all out with activity thinking it was over, I might have become a mild case.
Once I learned to pace properly, I got a little bit better at my baseline - especially cognitively - but it has been very stable overall for years. Not much better or worse. Other people seem to have ups and downs a lot more. Some of those people might be those who do not or cannot pace and crash themselves into severe regularly, while others seem to have their baseline itself change over the years.
I first got sick in 2001 and was able to just rest for about 6 months before doctors said I couldn't possibly still have mono and needed to go back to school (and run laps every day in PE since I was so out of shape 🤦🏻♀️). I wasn't diagnosed with CFS until I'd been told to push myself so much I ended up mod/severe in 2004. I got a lot better in September 2005 when I moved out of my parents house (in retrospect, it was very emotionally taxing living with them). But then I over did it living a pretty average college lifestyle, so I crashed hard in 2009 and was moderate until 2014 when again, I moved out of a stressful living situation (with my now in-laws) and was again so mild people didn't know I had ME/CFS unless I told them for about 4 years.
But then in 2018 I decided to go to grad school so I could have financial stability and the ability to work from home in the future. This was managable for about a year but then working full time while taking part time graduate classes made me gradually sicker and sicker and now I've been mostly bedbound since December 2022.
I still work part time and take one graduate class at a time (from bed) because I genuinely love my job, I don't want all the time/money/energy I spent on this masters to be for nothing, and don't know how I'd afford anything otherwise. I should finally graduate this December and hope my health will improve again after that happens. I don't even hope to be so mild I pass for healthy again, I just want to be able to take my electric wheelchair to travel or visit friends/family and be able to cook simple meals for myself again. Since I have gotten better in the past, it gives me some hope that will be possible for me. But simultaneously I also worry that this time I've made too many bad choices and permanently lowered my baseline.
So to answer your question, I'm currently doing a bit worse than I was my first year, but I've also been a lot better at other points. I should also mention that I tend to attribute these big changes in my health to life events or other external circumstances, but all of that is in retrospect while I try to make sense of how and why things changed. In the moment, every single one of those changes (for the good or bad) felt random and unexpected to me
Eight years in. I think I'm about the same in terms of raw capacity, but have learned my limits and can pace better now. That results in less aggravated symptoms and pain and is partly because of big life changes I had to make gradually over the first handful of years like cutting back drastically on work and reducing moving about the house.
If I had no choice but to live a month of life the way it first was when I got sick, I suspect I'd go back to the same results symptom-wise.
Unfortunately I still haven't had the option of cutting back on activity enough to not aggravate the symptoms each day. - I've always wondered if I'd been able to rest for the first 5 months, or even to cut back to my current activity levels immediately when I got sick, would I have got better? Or could I now, if I had that option?
If that would help people when they first get sick, I hope we get decisive evidence and supports so the newcomers have a shot at recovery.
Well first year I was sleeping 20 hours a day, so I would say better.
My problem is that I am a senior citizen now and it's hard to tell what's cfs and what's old age. Also I've been sick for 17 years so how much of it is simply being rundown and how much is cfs?
Mostly, I feel like I'm in a better place with it, but I still have bad periods. Thankfully mine is reasonably mild.
I was grateful for the pandemic in a selfish way. I was diagnosed the year before and was struggling to get on top of my symptoms while working full time and living alone. Then there was a solid 3 months of being at home, followed by 12-18 months of minimal office time. It allowed me to rest properly and take some time away from life a little bit.
Now, I work in a new, fully remote job and live with my partner so everything is shared. I'm still fatigued most of the time but the burden isn't so massive.
I was at my worst in 2013 after years of "too long" viruses hanging around, diagnosed whilst 90% bedbound in 2015.
I am about to start 2 days a week volunteering (easier to sort out if I get sick) and I care for a dear friend by just being around and their legs for chores they can't handle.
I spent ages in literal "I don't do anything that isn't 100% necessary land and had almost no life from 2014 to 2019. It's been painful.bit I cut everything I could and eventually got to the point of being semi functional to build on.
How long this lasts? I don't know. But it's *possible* to get better. At least as long as you don't overdo it after.
It's been about 13 years since I was diagnosed, and I've only got worse, I hit severe about 2 years ago
However, I found a supplement that has helped a lot, sodium butyrate, after years of following the science I formed a hypothesis, which seems to hold up, a few other people I've suggested it to have found it helpful too
So given it's been long suspected there's a microbiome compent, that includes would include the deterioration or suppression of butryate producing bacteria
Butryate plays a role in many systems impaired by ME, including the intestines lining, which as it decays causes damage to the intestines, leading to ibs symptoms
Next its oxidation is necessary for the uptake of glucose to the mitochondria, starting the krebb cycle producing atp, neccsary for every time the nervous system fires and for cellular respiration
It's also very important in the brain, being an ingredient to a number of important compounds, especially in the brain stem, where it plays a role in the regulation of neurotransmitters, also the most noticeable role is in the blood brain barrier (bbb) where it forms the connective junctions, essentially holding the barrier together. Given a recent study has demonstrated that brain fog is caused by micro bleeds across the brain, this would be the most likely cause, as the bbb deteriotion mixes with relocated blood pressure, causes the slowly growing gaps to let through blood, this is especially problematic during PEM due to the activity of macropahges and tcells, which target the brain matter considering foreign matter, with histomines in there as well it triggers inflammation often leading to migraines.
This last one was the most immidate and noticeable change after taking it, it caused a dramatic drop in pressure inside my skull, everything felt surreal, thinking became easier as I was return to a more normal headspace, honestly it felt almost like a really pleasant high, not because of it producing a psycho active effect, but because of how impaired my brain had been, normality felt so diffiernt
Oof =(
That's amazing you found a supplement that helps! Do you have a favourite brand for it? Do you know if it has to be sodium butyrate form or if other forms also work the same?
Well it's the sodium salt of butryaic acid, so that would work too, however given its fowl smell, it probably tastes awful, so pills are probably best 😂
I'm also five months in. Trying to avoid worsening my baseline too lol. Somehow gaslighting myself every other week that it doesn't get better anymore. Then it does. Then it doesn't. Then it does. Hard to fathom that I may one day understand my body again. I totally relate with your question lol. <3
I've had CFS for over 10 years since age ~8. TLDR is I started off extremely mild and very slowly got worse with a huge jump for high school final exams and a more recent jump that may be in part from transgender HRT. I wrote a detailed description of my experience since it's quite atypical and I hope someone else with a similar experience might gain something from it.
I was born with a genetic issue from my dad's side associated with chronic recurrent sinusitus. Most of the people in that family had to get related surgery and snore at unbelievable volume, lots of CPAP machines.
When I was 7-8, I had a year long perioid where I had sinusitis the majority of the time. My mum saw an ENT but they weren't interested in doing anything and she was very against me missing school, so I never missed a day. Eventually the sinusitis went away, but I still had issues breathing through my nose and extremely persistent brain fog.
When I was 10 I convinced my mum to take me to a GP for the brain fog and had some basic tests done but it was shrugged off. A year or two later I saw another doctor who was much more thorough. First they found low iron. I received an iron transfusion which made me extremely ill for a week and changed my diet which has kept levels fine since then, but that didn't seem to make a noticeable difference. I was referred to an ENT who was shocked I hadn't already recieved an adenoidectomy and turbanate resectioning. He pointed out that it was so severe my facial bones above my sinuses had been pushed out noticeably. The surgery helped me breathe better but didn't resolve the fatigue. I had a colonoscopy, CT scan of brain, two sleep studies and many other diagnostic procedures from age 12-15.
Around this time (~age 11-12) I started first noticing my first overt PEM after activities. I'm not sure whether I had PEM before this or not. I was a very active kid prior to the sinusitis but I became a lot more isolated and more interested in non-physical activities like computers and reading at the same time. It's hard to say what caused what. I would notice an increase in brain fog, and for the first time muscle pain after school sports days. I told my parents this, who assumed I just didn't want to do sport and in once case laughed at me.
At age 14 I was referred to a psychiatrist who specialized in ADHD. I had a borderline result on the test, with the only category solidly within ADHD ranges being short-term memory, which was really bad. He prescribed me Ritalin (methylphenidate) and then later Concerta, a long release version of the same drug, in a fairly low dose. It helped me concentrate and push through the fatigue which was useful at the time and lead to my marks at school going up a lot.
When I was 17/18 I completed my high school final year. I did well, but after exams I noticed I could no longer be upright all day. I would be in so much pain after enough hours in a chair or walking around that I lacked the willpower to remain upright. This was the first point at which CFS was really outright preventing me from doing things. It made me want to do things less previously and made them much harder, but I never really had to give up.
Almost immediately after my exams finished, at age 18, I had an appointment with a neurologist I was referred to almost a year before. She diagnosed me with CFS and referred me to the UNSW fatigue clinic, who do CBT and GET. They were actually fairly helpful with pacing and I ended up doing my own research and not going along with the GET. Regardless it wasn't really worth the money and others who actually followed their GET program have suffered immensely.
When I was 19, I started transgender HRT. I first overtly identified I had gender dysphoria when I was 13, although there were many very overt signs way before that. I forced myself to repress those feelings under the guise of figuring out after my then-unexplained brain fog was resolved, which is my greatest regret. I have gotten substantially more ill during the time I've been on MtF HRT, but it's unclear whether this is related. It's also fairly adequately explained by me not pacing well enough.
At the moment, I am 20 years old. I am currently taking a term off but otherwise I do a part-time computer science degree with disability provisions allowing me to complete it online. I spend ~75% of my waking hours lying down flat. I'm able to go outside every few days as long as I budget for it appropriately. I'm generally considered moderate by most CFS criteria. I am yet to have any period of significant recovery, but I've recently started low dose abilify and am hoping that gets me somewhere.
Much better, and getting better each year. First 2 years were the worst. I credit a year of taking the antiviral Famciclovir with my improvement. Been sick since July 2017.
Gradually worse, then even more worse after getting COVID. Stopped working and over the past few years I've started actual treatment of symptoms, not just pain mgmt and things have improved.
I'm much better at pacing now which helps. I'm not in the throws of grief everyday which also is less stress on my system. And I got diagnosed with OI and am on medication for it which is helping. Also MCAS. And LDN has made a positive difference too.
I've had it since 2016 but until about 2022 it was very mild. It then got worse in 2022 (when I got diagnosed) but still was mild/moderate but it kept getting worse. I'm happy its still moderate and I can go outside in my wheelchair but my life is definetly a lot different than before 2022 but I hope it won't get worse. I found my peace with it but don't know how I could handle being severe.
10 years, started mild and still is. A lot of ups and downs over the years, including some weeks where I almost didn't feel it. On other times, have to work only part time and rest a lot. But the average stayed the same.
Better in some ways, worse in others.
It's hard to measure cause I've changed living situations a few times. I used to live with a parent who would make dinner most days and handle a lot of the household chores so I was able to use my energy to keep more on top of things like my personal hygiene. I did also work once a week but that fucked me up. I used to go out for walks, too.
Because I live alone now I have to keep on top of everything myself meaning my energy is stretched more thin, and I end up having to focus on keeping myself fed so I don't get to bathe as often sadly. I also am not able to go on walks as often as I used to. However, I'm not just passing out or sleeping for 12+ hours on a regular basis - it does still happen sometimes, but not like it used to.
I did also catch covid in 2021 which I'm sure lowered my baseline. I think if I were still living with my parent and hadn't caught COVID I'd be about the same or perhaps even a little better. Hard to say for sure though!
From severe 30+ years ago after encephalitis (back when “it’s all in your head” and “just push thru it” was the advice) to moderate now because I’m mostly reclusive, pace very carefully, and live a quiet life.
I got sick in 2018, got myself all the way to severe. I'm now on the edge of mild and moderate so definitely a lot better, and have been hanging out either just into the mild or just into the moderate category for two years or so. Still goes up and down but I've become much better at pacing and taking good care of myself so I don't end up severe anymore.
13 years in. My first year was my absolute worst (mostly bedbound). I felt stuck somewhere between life and death and I was just 23 years old.
Now I can do some outings, putter, have a quiet life
My 30s are healthier than my 20s were! (No apparent reason, no medication, no wonky supplements, just time)
I also had improvements further at around 5 years in and 9 years in.
My internist at the time told me "Most patients with post-viral onset recover within a year" I didn't get that lucky but it is a whole other level to not be mostly bedbound.
My Dad's co-worker had to take 6 or 7 months off the office work after covid. He told me she was struggling like I was, couldn't walk to her mailbox. (I can do that these days but in my worst I could not) and she bounced back and was able to come back to the office job after 7 months. :) I hope your near the end the housebound days and can get back to your life soon <3
Pacing when housebound is really helpful, use timers if you can't tell yourself to go rest. (I'll do 15 mins of dishes but only 5 mins of lawn mowing and then 45 mins of rest)
Going on 18 years. It's definitely better. The first 5 years were my worst. I have regular highs and lows. Currently, though, my baseline has gotten lower, but I had a baby 7 months ago, and I'm sure the mix of hormones and not putting my needs first have contributed. Still, overall, I'm in a better state.
For me, unfortunately, CFS only gets worse with time. The only saving grace is that sometimes I am able to adapt to it faster than the decline happens and, subjectively, feel better and more capable for a while.
Avoiding crashes for a long time also provides me with temporary improvements, but I am not able to do this consistently as the life often doesn’t care about my energy envelope and doesn’t pace things it hits me with.
If you're able to, I'd love some links to read more about this. - Only if/when you're up to it. Thanks for all the work you've done here on this sub!
(Also, wondering now I think about it if that's likely because women tend to carry so much workload -damn!!)
here’s a great breakdown of the study https://www.nihr.ac.uk/news/mecfs-affects-women-more-severely-than-men/34277#:~:text=Women%20with%20ME%2FCFS%20tend,encephalomyelitis%2Fchronic%20fatigue%20syndrome).
This makes me scared. :< It frustrates me it isn't strictly discipline on pacing. But also luck and... bad luck. I mean, same is true for getting CFS in the first place. But it's still so scary.
i mean discipline won’t single handedly save you in any disease without treatments as well. otherwise it wouldn’t be a full on incurable disease it would just be small health condition
Worse in general though it does fluctuate over the year. It tends to be better in the summer (though I'm not a heat fan so I'm not sure why!?) and worse in the winter. I started out mild and I'm now in the moderate / severe border. It did seem to be specific events that knocked it down though; a change of medication (citalopram to sertraline) and getting covid rather than a steady decline.
I’m definitely worse than my first year and my onset was 14 years ago. I had great insurance back then, and was seeing every specialist I could, getting every test I could, and doing whatever treatment I thought would help. For me, none of it helped much, unfortunately. And pacing was the only thing I found that worked, and I didn’t embrace that until about 10 years ago. Back when my CFS onset, I was still working. It was tough but I was able to for a bit. Then, it got worse, and I had to quit my job. I haven’t been able to work in about 12 years.
I did do a 2 day CPET back when I was barely able to work, and the results were horrifying but basically confirmed exactly how I felt and what my doctor thought was going on. And I’m even worse than when I did that test years ago. I’d say I’m at “moderate” now. Mostly house/couch bound but I did learn to pace, and that’s been helpful in not getting *as many* bad CFS crashes.
(A bad car accident was the trigger of mine)
When it started in 2015, I was in excellent physical condition, so it took me some time to realize the connection between exertion and post-exertional malaise (PEM). Initially, I suffered from very intense pain but made significant progress by stopping physical activities, addressing untreated Lyme Disease from late 2014, replenishing my critically low B12 levels, and starting several medications for pain and fatigue. However, I never fully recovered, and my health began to deteriorate over the years. After 4-5 years, I became housebound and remained until I underwent spinal cord surgery last January for Occult Tethered Cord and Arachnoiditis. Since the surgery, I am improving, and my average daily step count has increased from 800 to 4400. I still deal with PEM to some degree, but nothing like before. However, it's still uncertain whether I will fully overcome CFS/ME after 9 years of living with it.
I’ve had it 9 years. First two years were the worst. I was in denial of my limitations and in a constant push/crash cycle. After two years of that I went to part-time work and I solely started building myself up by aggressively resting. I would consider myself mild but I sometimes feel moderate to severe when in a flare up, which happens less regularly. Because I improved my baseline I decided to get pregnant and had a child five years ago. I do not feel that it has drastically impacted my health one way or the other except I just don’t have as much time to rest if I’m in a flareup.
I suspect I've had it for more than 5 years (hard to tell though because I also have sleep apnea). I don't think Ive ever had any improvements... once I caught Covid in 2022 I went from mild to moderate for a few months, to now solidly in severe and still deteriorating (either that or something really sinister is happening in my sleep).
I've had it more than ten years now. Was mild at first, progressed over a period of years into moderate/severe, stayed there a few years. Figured some stuff out and have since been on a slow progression of improvement since then. Still aiming for full recovery, goal of this year. Mine is not caused by virus or bacteria, but is nervous system driven.
I had this for 9 years ish but hear me out:
Got it and became gradually severe and stayed severe-mod for 2 years: got antibiotics and was in remission for 5 years
Then got a new infection and got severe again, got antibiotics after 2 years once again and now I’m mild and been mild for 6 months and I’m gonna travel this month to a different continent 😊
At my worst I couldn’t speak more than 5 words a day ish but would still crash from that, could barely go to the toilet that was placed 3-4 m away from my bed
You may just have long Covid. I’m 11 months in. Was bedbound for about 5 months. Still get legs like jelly and hideous brain fog. But I’m better than l was a few months ago
I have pem though w flu like malaise as a main symptom I thought that meant it’s cfs. Interesting though my long covid doctor thinks it’s LC and just a maybe w cfs.
Mine started 9+ years ago, worsening ever since. I was already working part time, and I was able continue at my job for 4 years (with ever increasing accommodations) before having to stop due to deteriorating health.
I had no idea of what condition I had or how to pace in the beginning. I knew I couldn’t run anymore, but I kept trying to keep fit in other ways (weight lifting, walking, yoga). Little did I know that I was chipping away at my baseline with each PEM. I knew big crashes were bad, but I underestimated the cumulative effect of all the really small ones.
I *thought* I was fully returning to baseline after each bout of PEM, but the effect was much more subtle, especially in the early years. I liken it to transferring olive oil from one bottle to another. The longer I let it drain into the new bottle after each PEM, the more I keep…but for me some is always lost. If I have to switch to a new bottle soon after the last switch, even more is left behind. At least that’s how it works for me. Unfortunately, it took me *years* to figure it out because all the doctors here are useless and willfully ignorant.
Now, I’m housebound with LOTS of resting lying down and trying very hard not to deteriorate further because, for me at least, my baseline is a finite resource.
it's hard to pinpoint my "first year" bc i went undx'ed so long, and bc i didnt develop it suddenly in response to a trigger. so if we're being literal, I'm much worse than my "first year" bc whenever that was, i was so mild i didnt yet realize smth was wrong medically (unfortunately for a long time i and othera blamed weight and i developed some significant psych issues from it).
however, if we mark my "first year" as the first year it actually became DISABLING, when i started beating down drs' doors trying to get them to listen and help me, when i started getting tests for everything under the sun and doing my own research for answers, I'd say I'm better now (and tbc even at my lowest point I've always been considered clinically "mild" so i cant speak for severe sufferers at all!). right this minute, im better but poor bc i got stuck in a job that was terrible for my CFS and even just 2 months of it caused a lot of relapse, but before that job i was the best I'd been since it first got really significant! that improvement boiled down to learning pacing/my own unique needs as well as the right set of meds. it did not improve all on its own and i imagine if I'd continued without those factors (ESPECIALLY the pacing stuff!!) i would have gotten much worse.
ETA the symptoms first became barely noticeable around 13, were mildly disabling at the start of my sophomore year (15), and by halfway through my junior year at 17 they were severe enough i was forced to drop out of high school altogether. junior year was my worst CFS year easily, but after that we got me onto sleep aids for my insomnia, so once i was sleeping enough and not waking up at 6am every day, i was still doing poorly but stabilized. i got NOTICEABLY worse around 18 after a case of strep throat of all things (not even rheumatic fever! JUST strep??) and for a while was almost as bad as before i dropped out, but this was also when i finally started finding answers and learning to care for myself, so it's mostly been gradual improvement since. I am now 25, to give you that full timeline!
I think neither worse nor better, but I know my capabilities and limits better now. My mood is also better which allows me to better assess what I can do to feel better and know what the risk is with less bias toward making myself suffer and beat myself up about it when PEM hits. I schedule days to deal with PEM when the risk is there from the amount of energy expended.
8 years later and my life has improved. Going from a back and forth of being bedbound to being able to do a few dishes and cook dinner but not enough energy to stand up in the shower and wash my hair for the first 4 years was horrific. Then being able to do short walks, grocery shopping, brushing mu hair, play videogames (holy shit brain dog made that impossible before and that was always my free time pleasure.) I still think of random memories when my partner was listening to prog metal and my brain couldn’t handle such fast music with multiple Melodie’s packed into a single song causing extreme distress. And not being able to understand how medically there was nothing wrong with my body and brain yet how could I go from a person juggling two jobs and still being able to go on long walks and socialize afterwards . To then being a shell of a human after getting a virus.
Now I can go on long walks, I work enough to not worry about bills being overdue (job is one I sit and talk all day so that def helps), I go to museums, got gym memberships when there was a deal happening and I haven’t slid back in abilities like I had before. The PEM is no longer a worry but I still never ever push it. It’ll always be that fear of anything can happen. I still am frustrated that I kinda plateaued but I feel guilty knowing that I am lucky it didn’t get worse. But I’d like to work full-time, I‘d like to go hiking, I’d like to travel, I’d like to start doing marathons. Past three years I’ve been at 80% give or take which is at least enough to be human. Idk what caused improvements, I did edibles and was prescribed gabapentin in 2020 and it could all be a coincidence but I think having something numb the nervous system could be a correlation but we will never know because I never had a medical professional take me seriously, just a decent therapist giving me the gabapentin script for the “anxious behavior“ AKA expressing the hopelessness of not getting closure for why my body starting to glitch on 2016.
I am at year 11 I think. I am worse than first year, but mostly because of covid, but also because of stress ( I work from home at a family business and the busy seasons are too much for me). That said, I don’t feel that getting back to more of a mild version is totally out of reach ( say if I were to win the lottery and be able to retire ), but I don’t think my orthostatic hypotension which was dramatically worsened by covid will ever go to what it was. I’m on large medication doses for it though so perhaps I could improve enough that with the medication I could be similar in function…. I dunno. I could also easily say that I have slipped down ward with every year but that it has been gradual aside from covid.
Went from severe (6 years) to moderate (about 3 years) to mild (2 years). I have no idea why I improved. I'm still pretty limited as work now takes all of the small amount of energy I do have.
About 18 years in now.
It’s was a gradual decline for first few months, to the point of moderate.
The bouts of severe for a few years.
Changed my diet 3 years ago and started taking pacing seriously. Am now mild.
It's been 4 years for me now not quite 5 but it's improved most of the time. There are flare ups and improvements might be largely due to learning how to pace but my quality of life is better now regardless.
Worse. I've had it my whole life but it started getting bad in my 20s but now in my 40s I can't leave the house and am mostly in bed and haven't worked in 6 years and it feels like it's getting exponentially worse 😭
I was really sick but not bed bound the first year. Quit my part time job and school for 6 months, then returned to university and finished, lots of PEM the whole time. After I graduated, I worked 4 hours a day as a teacher's aid, and spent the rest of the day lying down in a daze, sort of feverish and in pain. Then my now-husband got a better job, I started working only a few hours a week (with adults), and I improved. So by year 5, I was better. Most was that I was not constantly radically overdoing, but some was that several things that were a pain in the beginning went away (hands suddenly swelling, face sometimes swelling, etc).
Now it's been more than 30 years. I am much better. Most is from high doses of bio-identical progesterone, that I went on after remission during pregnancy. A combo of LDN and Mestinon boosted me again, and reduced pain. Eliminating gluten got rid of the daily feeling of flu and some other things (though PEM brings them back). I didn't try gluten for a long time because I have no gut issues, and don't feel bad after a gluten full week - but it turns out I had to be off it for more than a month to feel the effects.
And yeah, in between it's been up and down a ton. After I was feeling better, hardly working, not in school, I overdid and spent a year mostly in bed, but I recovered from that. Worked part time for years.
I was better around the 5 year mark but I was told I wasn’t “sick enough” to have me/cfs so I went undiagnosed and only realized now, after exercising myself into becoming permanently worse, that I do have it.
Doctors still give me the same advice “exercise to get better” despite the fact I have PEM so bad going into the doctor leaves me in bed for 3+ days after. I guess they just think I’ve been exaggerating this whole time. So I just stopped going to the doctor at all.
Just know, it can always get worse. Sorry. But 5 months to me is almost nothing. I know it must feel like a lot because of how severe this illness can be. But I tested positive for my virus cytomegalovirus for 2 years straight. You may have active infection for longer than the textbooks say and so the recovery will take a long time. This is actually common but people are gaslighted so much, they won’t even study people properly due to the stigma.
Don’t assume your symptoms right now are me/cfs. I don’t believe they are automatically, you aren’t even supposed to be diagnosed with me/cfs until after at least 6 months of illness. I’m going to say that it is closer to “long COVID” in the literal sense as in you could have active infection for longer than normal, but that doesn’t mean you won’t (hopefully) recover. You may never actually have post viral illness or not for long. It sucks that doctors are so ignorant about diseases that last longer than the textbook narrative. Just rest for now. It’s good to be in this community and follow recommendations so that if you are at risk of developing me/cfs you decrease the chance by avoiding spending too much energy. Or if you do already have it, with no active infection anymore, you have a much better chance to recover if you avoid PEM
Thank you. I really hope it is long covid. I do have nasty pem though so I thought that makes it cfs but then people like Jen Brea had pem and for Better once cause was eliminated. People with dental infections causing it get better. Is there a covid aspect that can get better ? I don’t know and have a lot of doubts. Would be great though.
You know, it’s crazy to me this whole long Covid situation because I have suffered for 10 years being ignored by the medical system. None of the doctors I saw even knew what me/cfs was. And suddenly we have a ton more post viral illness patients and now every doctor is forced to learn about me/cfs and I bet they are in some cases just passing out these diagnosis after a while to get patients off their back. Really, you won’t know what the future will hold. 10 years zero medical care I’m still here. They told me to exercise which robbed me of my remission (it was going well but I screwed it up by over exerting) I’m worse now but still here. Every action has an equal reaction, so if I play my cards right maybe I can go into remission again by resting a lot. But I’m only even in this situation because of the lack of guidance and being told to exercise, I was a very active person well into this illness and it screwed me over. Don’t exert yourself when you are sick. You may have pem like symptoms because you still have active infection. Rest, wear a mask, use hand sanitizer to protect your immune system. Even if it is me/cfs and it doesn’t resolve in the next few years, because of people like you (thank you) we will have more research done. The main barrier to me/cfs treatment has been the stigma (like AIDs) not necessarily the illness itself. You just need to focus on surviving for now, think of it like another severe illness. Prioritize rest and trust that in a years time things will be figured out and probably be better. And if not better, we will have more resources to deal with this due to the research coming along.
People with CFS pre-covid generally got better within the first 6 months or didn’t at all.
People with CFS from covid seem to be doing better.
My original CFS lasted 20 years. My covid induced CFS is better than it was but it’s easy to get a set-back and do worse for a while.
Since ME/CFS was much less recognized pre-covid and it took many years to get accurately diagnosed, I think it’s also possible that the people who got better in a year or two just never got a correct diagnosis in the first place. That makes it hard to compare post-covid and pre-covid ME/CFS progression, there’s a lot more awareness and diagnosis of long covid earlier on than there was before the pandemic with other post-viral illnesses.
I had CFS for 20 years and attended many support groups in multiple states.
I was on a national list for a while, for people to call if they had CFS and needed someone to talk to.
I’ve known a lot of people with CFS and done decades of reading on the research.
I was diagnosed in one month.
Yes many are misdiagnosed. That can skew things. It is possible that those with CFS who have gotten better are those who didn’t have it.
I've had it for 8 years. I'm better in some ways and worse in other ways. For my first year, I had fevers every night. That eventually stopped. My fatigue was also much more extreme and constant. But now I have so many health issues that have worsened/developed since I first got sick. The extreme muscle/joint pain, debilitating sound sensitivity, and hyperPOTS didn't hit until the second year. I've been able to make some things better, while others have gotten worse or newly developed (like now I have mitral valve insufficiency I didn't have before). I also developed TMJD and trigeminal neuralgia, plus my migraines came back that I hadn't had in years. Thankfully, I've found things that help with those, but they only work so well. My MCAS is also very inconsistent. I go through periods of gradual improvement and then I'll suddenly wind up in a situation I can't get out of that pushes me past my energy level and I'll get set back a ton, especially because I stop being able to do any PT and I'll lose the small amount of strength I had slowly rebuilt. So it's hard to say. It's certainly very different now, so definitely not similar, but it's both better and worse. I've had years that were way worse than the first year, and years that were way better.
Diagnosed in 2018 but I can’t pinpoint exactly when the CFS started because I also had chronic fatigue as a symptom of severe Ulcerative Colitis. Since then, I’ve only gotten worse. I’m not bed bound but I’m basically housebound.
I've had it \~9 years. I'm definitely worse now than I was in the first few years, but it also took me a long time to understand what the illness was and how it works. I did a lot of pushing through the fatigue for the first 6 years or so—sometimes in cases where I couldn't help it, but others where I would have handled things differently if I understood the long-term cost of those decisions.
I'm still technically mild, but my capacity to work and have a life outside my house is much lower now than it was in the beginning and only seems to be getting worse over time. My symptoms get worse in the hot weather though, so I'm *really* feeling it right now which might be influencing my answer.
I've had it 8 years, started very mild and have gradually declined into severe. I've never had periods of improvement. My father had it 7 years, started at his worst (severe during acute mono then moderate after) and only ever stayed the same or improved. After 7 years he was back to normal and never got ME/CFS again. The most common trajectory is fluctuating severity. People get knocked down by PEM, illness, etc and then gradually recover, then something happens and they drop again.
Wow that’s amazing. Really is hard to tell
The one thing for certain is that you can't be certain what your own trajectory will be. Maybe future diagnostic tests will be designed that can determine what the most likely outcome is, but for now, it's a lottery. Sometimes people spontaneously improve significantly or even recover fully. We don't know why and can't predict it, but there's always hope it can happen, even if it's unlikely.
I had struggled with moderate ME/CFS for two decades, but experienced an almost full remission after moving to the San Francisco Bay Area. I was over the moon excited about it and started making all these plans, but it only lasted for two weeks because my husband brought home Covid during the omicron spike. I got Covid, too, and have been moderate-severe ever since. I pray for a miracle cure for all of us suffering.
You explained what life with CFS perfectly. I was doing okay but then I got an infection last fall and I haven't recovered. I'm hoping I will recover again. I've accepted that I most probably will never live a normal life.
Do you think your dad’s experience has affected you getting worse? My mom has fibro but is still able to work so she just kept saying to pace but also exercise, so I progressively got worse. She normalized illness so I never thought I was that bad. Even believed the doctor gaslighting me to exercise too. It sent me from mild-moderate to much more severe
I'm sorry that has been your experience. Unfortunately him having had it has made things harder for me, too, since it gave him a biased view of what's needed to recover. He started going on walks as he felt better, so he saw that as the way to improve, but him doing what was essentially GET was unlikely why he improved. He most likely was improving on his own and that's why he could go on walks. But because he saw it as the reason he got better, he pushed that expectation on me. It also led to him not understanding that I was getting worse and why. He finally has gotten better about it the past few weeks, but for months after I moved in with him he didn't provide the level of help I needed. He kept insisting I need to find and treat the root cause, ignoring me when I said ME/CFS isn't just a lazy diagnosis by doctors who can't be bothered to do tests (which is how it was viewed when he had it). It is a legitimate diagnosis that is managed by pacing. By not seeing it as legitimate, he didn't value the importance of pacing, leaving me with no choice but to get PEM in order to do basic things like prepare food.
My mom forced me to do the same. I remember early on crying every day from the pain of exercise. I started to get better around that time so everyone thinks that same logic applies now. And that I’m lazy and making myself stay sick by not exercising. They won’t even look into me/cfs, though my mom saw a video on it once and got excited saying that’s what she has too. I’m not sure if my mom is a narcissist or just emotionally immature. Still she won’t actually read about this illness to try to understand my situation. She avoids me because I’m probably “too depressing” for her, I’m lucky I can still crawl upstairs to eat microwave meals. No one is more wrong about this than people who supposedly had it and got better. Really annoying people out there on YouTube and stuff turning this into a lifestyle brand and promoting exercise and CBT when that has nothing to do with recovery, only makes you worse. Doctors assume I am deconditioned and lazy too but I know for a fact that a decondotioned person on bed rest is still able to eventually get up and do things once their illness is over.
It is really frustrating when people can't be bothered to actually do research. You'd think they'd take the initiative to learn about a debilitating illness affecting someone close to them. Also doesn't help that a lot of websites still have outdated and harmful information, so even if some do research, they may still end up with an incorrect understanding. I don't think everyone who gets better only 'supposedly' has it. I can't remember where I saw the figure, but I think like 5% of people with it do fully recover. The issue comes from the fact that most of those who recover from ME/CFS likely did it independently of any treatment they tried, but they believe it was the treatment and assume it will work for everyone. Ignoring the experience of others due to their own, different experience is the real problem. That and the fact that some doctors do misdiagnose people with it or some people misdiagnose themselves, muddying the waters. Or they intentionally lie, like grifters do. But still, not everyone who fully recovers is a misdiagnosis. It can happen, just rarely, and likely not for the reason people think.
I didn’t assume it was a misdiagnosis because he recovered. I mention that as a possibility because it’s strange to see someone claim exercise is a cure if they actually has me/cfs with the PEM and everything. That said I know lots of people are only mild and still work. Or they don’t ever get worse than moderate. Or they do eventually get better and start to do more so they think the doing more is the cure. Hell, even I “got better” and assumed walking helped. In reality it was only a remission.
Ah, gotcha. I just see recovery denial here a lot, where people are quick to say that all recoveries are a misdiagnosis, which is understandable but doesn't seem to true scientifically. I do think that people who get better from exercise were already getting better on their own, or else they would get stopped by PEM. That's why I say my father likely walked because he got better, not the other way around.
I think the recovery rates could be a lot better if like MS and AS this condition was caught much sooner and treated. Even if the treatment is mainly resting and avoiding crashes. It’s common sense really, but I think the stigma is so severe that a lot of people like me go 10 years or more still being told to push out of the “rut” and exercise more. Our medical system is a total joke.
CFS for 27 years. Got a virus in 1997. Lead to CFS. Was bad at the start. Pushed myself to finish uni. Got to a point where I worked full time. End of 2016 I got Influenza A and went downhill big time. End of 2022 I had to leave a part time job due to becoming bedbound. Now am housebound, but only in bed when I'm crashing. Due to better understanding CFS I don't push through. So, my symptoms are less than I had at the start. But, i also do way less. So, it is debatable whether my quality of life is better or worse.
Oh my god — I could have written this myself! I’ve been sick about that long. Kept pushing through uni, then work, got the flu and pneumonia really bad in 2019. Thought I’d go back to part time work but struggled and finally bit the bullet and gave up work. Best decision ever! I can actually pace properly and listen to my body without thinking “I just need to get through this workday and *then* I’ll rest”. I used to have a guilt complex about it and now I just don’t. I would also say my quality of life is much improved (due to pacing and rest) but if I tried doing half as much as I used to, I’d probably collapse in a heap.
I’ve been sick that long also. It comes and goes. For some reason I have the most trouble In the spring and fall.
Glad you improved lately hopefully more to come.
this post made me realise how long i've been with this horrible illness... i was going to say "same, it's only been a few months for me too". few months? it's been 3 years. sometimes i forget that i lost a good chunk of my teenage years to ME/CFS.
i feel this. im 25 and still often resent that my high school years were stolen from me like that. CFS was one of several issues that contributed but it's a toss up for being the worst next to bipolar depression. and in reality, if i didnt have ME/CFS, i most likely would have been a LOT less severely depressed too 😭
this may sound selfish but i'm glad to know i'm not the only one who feels this way. thank you for sharing this with me. depression is another type of hell, i'm really sorry you suffer from it aswell. lots of love ❤️
Yeah I got it at 14 and now I’m an adult with no high school diploma or anything really. I can’t take classes anymore (I tried for a long time) WTF am I supposed to do? 10 years of bullshit now to look ahead to more bullshit
That's really hard, dealing with both bipolar depression and ME/CFS. I've had bipolar since I was 7, and it went untreated until I was 18. Made for an extremely miserable childhood. After a total mental breakdown I finally got the bipolar medicated and was so happy to be able to live my life fully. Six months later I got ME/CFS due to negative side effects from those bipolar meds. Just can't win. I did finally find meds that don't cause me issues and have been depression-free for over a year, which has made being severe much more bearable.
i feel that 😭 im so sorry you reacted so badly. ive done so well on my antipsychotics/mood stabilizers, its always wild to me to remember how awful they are for so many people 😭 im glad you have ur mood symptoms under control but im sorry you got CFS in exchange 😔 i can't be sure when my hypomania first emerged but i was actively suicidal by 10 so i definitely at least had the depression stuff early, if not full-on bipolar 2 😭 i was 15ish before i got onto antidepressants and probably 17 before anyone figured out it was bipolar and that SSRIs on their own really weren't great for me 💀 but once we got me on seroquel we killed two birds with one stone bc it dealt w my bipolar mood symptoms & hallucinations AND my ME/CFS related insomnia 😅 ive heard some BAD stories from others who used seroquel, but ive been lucky to have it help me IMMENSELY for the last 7-8 years now 😭 though admittedly it was a BITCH at first on the lower doses (which often have stronger side effects than high doses in many ppl for some reason??). i started seroquel a couple months before i dropped out of school formally and i was so sleepy i was lucky to get through more than one class period every few days. i physically couldn't stay awake no matter what I tried, to the point my first period history teacher didnt ever even get mad at me bc she could tell i was TRYING and couldn't help it. like you KNOW it's bad when you show up to a given class maybe every other day, sleep through the whole thing, and literally never finish any classwork or homework, and all the teacher does is occasionally ask if you're okay/check in to be sure you arent dead 💀💀 she never ONCE got after me for it. absolute angel 😭
I wish doctors were better at recognizing bipolar in children. I think the usual onset is around 20, so I get why they might not notice, but that means those of us who do get it young have to struggle with it for a long time without even understanding why we're suffering so much. Medication can be a real gamble, and I understand why people can be apprehensive about psychiatric medication. But honestly, I was magnitudes more miserable with untreated bipolar than I am now with severe ME. It really sucks I got sick from my meds. I should have stopped taking them sooner, but I know why I didn't. I desperately wanted to not be depressed anymore. I can't regret trying the medication, since I'd be dead if I didn't have my bipolar under control. But it didn't have to be like this and I wish it wasn't. I do believe though that even if I didn't take those meds, it probably would have been something else that eventually triggered ME, like covid. I think I inherited a risk factor from my father, who also got it in his 20s, that made me predisposed to this happening.
a lot of my issue was also not really feeling like i could tell my parents what was going on until things got so bad i had no choice tbf, so i wasn't ever seeing drs except for yearly checkups. that said, i agree w u, and this is much of why i think part of well child visits should involve basic psych evals without parents present :/ that's becoming pretty normal with teens but i feel like it should begin at LEAST at normal puberty initial onset age, like 8ish. i am glad you at least have better quality of life now than before, but i also wish it didn't have to be a trade off. you deserve for BOTH issues to be well controlled 😔 i feel you on the inevitability too.
I'm light-years worse. Though, I didn't know what it was for 5 years. So, I caused myself to crash repeatedly because I did not know that it could make my baseline worse. Hell, I did not know I had a baseline. Now, my baseline feels like a rough crash did back then.
That’s rough. I had Fibro since young so knew about crashing from the crossover support groups.
I was told to do GET so my first couple of years were a roller coaster. Long term I'm prone to relapses from adverse events, but my baseline has slowly trended up over time from severe to moderate. I've never made it back to how well I was just before GET crashed me though.
GET is a fucking monstrosity, I'm so sorry you had to go through it. I also had doctors recommend GET who should have known better.
And they’re still pumping millions of dollars into forcing it onto people after all this time. Truly horrific!
I often wonder how my life would have turned out if I had a doctor at the 1 year mark who said "you have ME/CFS, you need to learn pacing" instead of "it's Postviral syndrome, you need to do more GET and CBT". If he had called it by the right name I would have found the correct information myself. It just never occurred to me that a doctor could be giving out disastrous advice.
Incredible how many get horror stories. Hopefully you keep progressing upward.
Thanks!
What’s GET?
Graded Exercise Therapy. the gist is basically just gradually intensified exercises designed to increase your exercise tolerance and fitness level. basically just exercise training designed to gradually raise the bar as you meet new goals. until the last like. 2-3 years i think? it was the only formally "recommended" ME/CFS treatment. it's so atrociously damaging for almost all of us, they finally stopped recommending it, after YEARS of ME/CFS activists begging them to stop pushing us all into something so harmful. The thing is, for MOST conditions with chronic fatigue as a SYMPTOM, GET is actually a great thing bc the issue is deconditioning, and in most these cases, those people don't expect PEM (Post Exertional Malaise), so even if they feel kinda awful after exercise at first (much like someone who just lives a sedentary lifestyle deciding to start working out would), they gradually improve and soon begin to feel BETTER after exercise, not worse. for ME/CFS sufferers, we will gradually feel worse after each workout no matter how "conditioned" or "fit" we get, thanks to PEM (which is a diagnostic requirement for ME/CFS and is what sets us apart from most other fatigue sufferers). exercising causes us to crash, not improve, and can even PERMANENTLY worsen our baseline. any dr who actually understands ME/CFS will tell you pacing and avoiding triggers (including strenuous exercise!) is the way to go.
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Why do yo think it has been degrading so much? Just age?
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I didn't mean it that way. I was wondering whether age is negatively impacting CFS, as in what specifically might trigger worsening CFS symptoms if you pace correctly. I guess it's longing for control over an aching body heh.
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Okay. I have had CFS for five months now and try to gauge the risk of worsening as well as the chance of betterment. My clueless doctors as well as the painfully slow time my diagnoses are processed into further steps aren't very encouraging, hence I am here. Though it seems less of a treatment and more of a restructuring of your own life to rest as much as possible, while at the same time being rather powerless to circumstance. It truly feels that way, aging doubly, living occasionally. Yet living, huh. I am carefully optimistic when it comes to scientific progress regarding this illness. Not very optimistic when it comes to social progress, development of healthcare and living conditions. It's like a race, almost, here in Germany at least. But if CFS has gotten me to do one thing it's to focus on the present at all times, in a nurturing, deliberate kind of way. Although I'm sure my outlook will be vastly difference in times to come. Funnily it's my partner that is the sole reason for me to even think of making plans. Otherwise I would just isolate for a long, long time, probably. Either way, wish you the best of health, out looks and, rather than bearable moments, moments of true happiness. :)
I would strongly suggest at your age that you try — what’s it called? The aggressive resting thing where you conserve your energy as much as possible? I think that’s one of the few things that’s helped a fair number of people improve their baseline. I’m trying it now myself. I’ve had this blasted disease for 18 years now, and I’ve declared 2024 the year of trying everything I can! I’ve gotten a lot of ideas from this subreddit, actually. I started out pretty mild (I was under a huge amount of stress at school and just randomly broke out in Shingles, which brought on the ME) and somehow kept teaching high school full-time for eight more years, then left to care for my mom for four years, and then came back and had to teach a few more years before I could buy some years and retire early. Those last two years really did me in, and now I’m moderate to severe most of time. But at least now I’m retired, I have almost no stress, and life is good other than being miserable lol.
Damn. Thanks for your story. I have the fortune that I just finished school. I lost my job summer of 2022 because due to, well, long covid I was unable to walk for three months, and no doctor could explain to me why. It also went away on its own with no reason. Then I didn't dare to tackle another job due to the ever since then quiet foot pain. Felt a bit unlucky (lol). Finished school, did a year off. For travelling, for writing (my novels) and finally moving out end of 2024. Instead, I caught covid again, or the flu, or whatever, either way, it never left me since first week of January, but this time... for real. Struggling with my long-distance relationship and pretty much unable to write too, but at least it happened when I had time, I suppose. I still want to move out, and badly, too, mostly because I worry about reinfecting myself with covid in winter here, what with my "you can't avoid catching viruses so might as well get it over with" mother and my 4 year old "let's bring home every conceivable virus possible" nephew in the house. But of course with a lot more worries on my plate. Very very careful about not overdoing it, especially with my anxiety disorder and autism making it hard to not overstimulate quickly. I crashed a few times already, but always minor, like one or two weeks of rest and it was fine. First time now that it takes longer. I do not want to crash again. Rest is king. If I rest, I can stay dynamic, if I stay dynamic, I avoid pain and, most of all maybe, utter isolation. It's a constant balance game and as long as society will help me out with the bare minimum of existence, I will be able to keep doing it for a long time I'm sure. Hearing your story, I am very much humbled by my fortunate circumstances. I wish you the best of moments.
I’ve had it 35 years with a post viral (EBV) onset. First year I was totally bedridden. I recovered but couldn’t exercise at all and still needed to rest loads. I didn’t know I had it then. I got sinusitis all the time (looking back probably PEM driven). In 2018, a bit overweight and out of shape I thought I would start exercising and that tipped me over the edge plus a covid infection and a HSV2 skin infection so that I was bedridden again in 2023. I’m slowly climbing back up - but mine relapses and remits. May was awful - I spent 2 weeks in bed but I’m slowly recovering some baseline now and feeling a bit more positive.
I never imagined or could even comprehend how severe I’d become if you’d tried to tell me while i was briefly mild
Why did you, then? :(
Probably bc the first few years it can be difficult to accept you’re really ill and continue to do things you used to be able to do and sadly continue to decline without understanding why.
because it was many years ago and diagnoses were almost impossible to get. it took my 2 years of pushing and pushing (per my doctors orders) instead of resting. i saw dozens of doctors and no one would even test me thoroughly to rule stuff out and by the time they had figured it out. i was also forced into GET. it’s not always a choice, there was zero awareness 10 years ago
i don’t think we should censor very severe people’s experiences because they’re not pretty and make mild people uncomfortable, and people should understand what risk they’re in for so they can hopefully prevent that it’ll happen to them
I don’t think they were trying to censor you. Based on other comments they’ve made, I think they are looking for anyway to have some modicum of control over their situation and not progress in severity. I think they are trying to ask what caused you to worsen. It was just asked a bit awkwardly.
Thanks, that's it.:) I am aware about probably being annoying on here, to be honest, but I really don't mean to be insensitive.
I think I also read that you’re only 5 months in to your journey with this horrid illness. Many of us can remember grasping at straws and looking for any sense of control we could have over our progression in the beginning of dealing with this. I think that’s really understandable. Many of us have also had people in our lives who blame us for not doing the right things to get better, so it’s understandable that people may bristle when you ask why they progressed. You may not intend it in such a way, but if not worded carefully it can be received as “What did you do wrong that caused this to happen?” It’s a tricky subject to discuss, especially if there’s a language barrier involved. I hope you’re one of the lucky ones and you recover. It happens for some, but isn’t the reality for many of us, no matter how well we care for ourselves <3 If you’re to have any chance, your best bet is to pace, pace, pace. Don’t push yourself. Learn to listen to your body. Watch that your heart rate doesn’t become too elevated for too long. Do what you can to increase your coping skills, as the road is often hard and long. I’m finding some help using my Fitbit to watch my heart rate and connecting it to the Solve Together/My Data Helps app which sends me notifications as my HR becomes elevated. It lets me know how many minutes per day my HR is over 98bpm and how many "active minutes" I've had that day compared to my baseline. I can also log symptoms and treatments on it. I'm currently also trying out the free version of the Visible app, which allows for symptom tracking and checking of base level HR and HRV every morning.
I mean ultimately fault is relative. I am autistic and very direct sometimes. I have made mistakes. I have gamed a lot because I couldn't move much. Gamed too much., Now I've had headaches for two weeks straight and hope they will subside. It is... I just want a sense of control over this. Nobody is to blame. We all just want to live a bit, rather than only survive, and on top of that live in an unforgiving society when it comes to understanding chronical illness. Fitbit is a cool advice, thanks. My main goal is to be able to write (stories), watch films, and have a bit of dynamic possibilities, be it taking a walk, meeting my partner, yoga, having sex. This illness seems very counterintuitive to fending off... well, other illnesses. It's hard to understand how much is fine. And how much is not. And hard to estimate when you already are in pain, unsure whether it will get better again or not. I know I'm singing the old tune of newlyweds of chronic pain. Sorry, I truly don't want to waste your time. I'm just thankful for the advice.
My symptoms have improved since I was first diagnosed, but I've also made massive lifestyle changes (switched from a somewhat physical job to working from home) and am on LDN and meds for POTS. I really hope things get better for you.
Thank you. And congrats on the progress.
Can I ask what meds you are on for POTS?
Currently just nadolol plus salt tablets. It made a huge difference for me.
Thank you! I don’t know if I have POTS but my heart rate is all over the place and I have been getting palpitations after doing something sometimes for even 30 mins after stopping. Also my legs are so weak and feel like I’ve ran 100m after just going up like 2 steps. I might look into what you’re taking see if it helps
The results from this question are going to look a little more bleak than the reality. People who improve over time are more likely to find a stable and satisfying-ish way to live (and so not be spending so much time in groups like this one) and COVID really knocked a lot of people down, who were otherwise stable or gradually improving.
This is true, and now SARS-COV-2 and SARS-COV-3 continue to infect and reinfect *billions* of people, millions of whom will get some kind of CFS. Pretty bleak!
Yeah I was about to start working full-time but then got Covid :/
I've been ill for over 30 years. I've had ups and downs in that time. There have been times where I've been much better than the first year, but currently I am worse. Getting older is bound to factor in of course, but I'm still hopefully I will have better times again one day!
significantly better, not as good as a couple years ago but nowhere near as bad as when i first crashed properly (i say this bc though i had EBV when i was 8 and i was unwell on-and-off in the years afterwards, i never had a proper full-on crash until i was 13-14. i’m 23 now.)
Have had it for around 8 years. In the bigger picture it's probably gotten worse over the years, as it started very mild and is now moderate, but it stagnates a lot I feel, and it never dropped drastically. On one hand, this is an objective positive, as it means I'm not doing as bad, on the other hand, this also means I'm not really seeing it getting worse until it already happened. For the last 3 years or so, there wasn't another decrease, so I'm fairly positive I'ce reached my bottom in moderate. While I'm unable to work, I'm thankful that I can nurture myself and maintain personal standards, and even have some spare energy to go after non-demanding hobbies. That helps a lot with my psyche.
Worse :( diagnosed 10 years ago, started moderate then gradually improved to mild/very mild. Despite having a diagnosis I had no idea what pacing was or how much damage I was doing to myself when I kept pushing through crashes - which is what happened last summer, as a result of stress. By October I was severe and have been housebound/often bedbound since then. I really really hope I can improve 😣
Worse, but I suspect I would have been milder than my starting point if I had known to pace properly in those early months. At around month 8, I had a week or two with extremely mild symptoms and if I hadn't gone all out with activity thinking it was over, I might have become a mild case. Once I learned to pace properly, I got a little bit better at my baseline - especially cognitively - but it has been very stable overall for years. Not much better or worse. Other people seem to have ups and downs a lot more. Some of those people might be those who do not or cannot pace and crash themselves into severe regularly, while others seem to have their baseline itself change over the years.
I first got sick in 2001 and was able to just rest for about 6 months before doctors said I couldn't possibly still have mono and needed to go back to school (and run laps every day in PE since I was so out of shape 🤦🏻♀️). I wasn't diagnosed with CFS until I'd been told to push myself so much I ended up mod/severe in 2004. I got a lot better in September 2005 when I moved out of my parents house (in retrospect, it was very emotionally taxing living with them). But then I over did it living a pretty average college lifestyle, so I crashed hard in 2009 and was moderate until 2014 when again, I moved out of a stressful living situation (with my now in-laws) and was again so mild people didn't know I had ME/CFS unless I told them for about 4 years. But then in 2018 I decided to go to grad school so I could have financial stability and the ability to work from home in the future. This was managable for about a year but then working full time while taking part time graduate classes made me gradually sicker and sicker and now I've been mostly bedbound since December 2022. I still work part time and take one graduate class at a time (from bed) because I genuinely love my job, I don't want all the time/money/energy I spent on this masters to be for nothing, and don't know how I'd afford anything otherwise. I should finally graduate this December and hope my health will improve again after that happens. I don't even hope to be so mild I pass for healthy again, I just want to be able to take my electric wheelchair to travel or visit friends/family and be able to cook simple meals for myself again. Since I have gotten better in the past, it gives me some hope that will be possible for me. But simultaneously I also worry that this time I've made too many bad choices and permanently lowered my baseline. So to answer your question, I'm currently doing a bit worse than I was my first year, but I've also been a lot better at other points. I should also mention that I tend to attribute these big changes in my health to life events or other external circumstances, but all of that is in retrospect while I try to make sense of how and why things changed. In the moment, every single one of those changes (for the good or bad) felt random and unexpected to me
Sounds like you are me. I have the ups and downs and it is all related to how stressful and taxing my lifestyle is.
Eight years in. I think I'm about the same in terms of raw capacity, but have learned my limits and can pace better now. That results in less aggravated symptoms and pain and is partly because of big life changes I had to make gradually over the first handful of years like cutting back drastically on work and reducing moving about the house. If I had no choice but to live a month of life the way it first was when I got sick, I suspect I'd go back to the same results symptom-wise. Unfortunately I still haven't had the option of cutting back on activity enough to not aggravate the symptoms each day. - I've always wondered if I'd been able to rest for the first 5 months, or even to cut back to my current activity levels immediately when I got sick, would I have got better? Or could I now, if I had that option? If that would help people when they first get sick, I hope we get decisive evidence and supports so the newcomers have a shot at recovery.
Well first year I was sleeping 20 hours a day, so I would say better. My problem is that I am a senior citizen now and it's hard to tell what's cfs and what's old age. Also I've been sick for 17 years so how much of it is simply being rundown and how much is cfs?
Mostly, I feel like I'm in a better place with it, but I still have bad periods. Thankfully mine is reasonably mild. I was grateful for the pandemic in a selfish way. I was diagnosed the year before and was struggling to get on top of my symptoms while working full time and living alone. Then there was a solid 3 months of being at home, followed by 12-18 months of minimal office time. It allowed me to rest properly and take some time away from life a little bit. Now, I work in a new, fully remote job and live with my partner so everything is shared. I'm still fatigued most of the time but the burden isn't so massive.
I was at my worst in 2013 after years of "too long" viruses hanging around, diagnosed whilst 90% bedbound in 2015. I am about to start 2 days a week volunteering (easier to sort out if I get sick) and I care for a dear friend by just being around and their legs for chores they can't handle. I spent ages in literal "I don't do anything that isn't 100% necessary land and had almost no life from 2014 to 2019. It's been painful.bit I cut everything I could and eventually got to the point of being semi functional to build on. How long this lasts? I don't know. But it's *possible* to get better. At least as long as you don't overdo it after.
ME/CFS for 20 years or so. I had about 3 years in my 20’s where I didn’t suffer so many symptoms. Decline again in the last 6 years or so
i’ve been this way since the car accident 33 years ago. it only feels worse over time, mentally and emotionally but physically it’s all the same
10 times worse, at least, but it had been a gradual worsening since my diagnosis in 2008.
It's been about 13 years since I was diagnosed, and I've only got worse, I hit severe about 2 years ago However, I found a supplement that has helped a lot, sodium butyrate, after years of following the science I formed a hypothesis, which seems to hold up, a few other people I've suggested it to have found it helpful too
May I ask what the hypothesis is?
So given it's been long suspected there's a microbiome compent, that includes would include the deterioration or suppression of butryate producing bacteria Butryate plays a role in many systems impaired by ME, including the intestines lining, which as it decays causes damage to the intestines, leading to ibs symptoms Next its oxidation is necessary for the uptake of glucose to the mitochondria, starting the krebb cycle producing atp, neccsary for every time the nervous system fires and for cellular respiration It's also very important in the brain, being an ingredient to a number of important compounds, especially in the brain stem, where it plays a role in the regulation of neurotransmitters, also the most noticeable role is in the blood brain barrier (bbb) where it forms the connective junctions, essentially holding the barrier together. Given a recent study has demonstrated that brain fog is caused by micro bleeds across the brain, this would be the most likely cause, as the bbb deteriotion mixes with relocated blood pressure, causes the slowly growing gaps to let through blood, this is especially problematic during PEM due to the activity of macropahges and tcells, which target the brain matter considering foreign matter, with histomines in there as well it triggers inflammation often leading to migraines. This last one was the most immidate and noticeable change after taking it, it caused a dramatic drop in pressure inside my skull, everything felt surreal, thinking became easier as I was return to a more normal headspace, honestly it felt almost like a really pleasant high, not because of it producing a psycho active effect, but because of how impaired my brain had been, normality felt so diffiernt
That's amazing — thank you for sharing! How do you take it — liquid?
Nope, I take sodium butyrate, the sodium salt of butryaic acid, they come in pills, which given its unpleasant smell, it probably tastes awful 😂
Oof =( That's amazing you found a supplement that helps! Do you have a favourite brand for it? Do you know if it has to be sodium butyrate form or if other forms also work the same?
Well it's the sodium salt of butryaic acid, so that would work too, however given its fowl smell, it probably tastes awful, so pills are probably best 😂
I'm also five months in. Trying to avoid worsening my baseline too lol. Somehow gaslighting myself every other week that it doesn't get better anymore. Then it does. Then it doesn't. Then it does. Hard to fathom that I may one day understand my body again. I totally relate with your question lol. <3
I've had CFS for over 10 years since age ~8. TLDR is I started off extremely mild and very slowly got worse with a huge jump for high school final exams and a more recent jump that may be in part from transgender HRT. I wrote a detailed description of my experience since it's quite atypical and I hope someone else with a similar experience might gain something from it. I was born with a genetic issue from my dad's side associated with chronic recurrent sinusitus. Most of the people in that family had to get related surgery and snore at unbelievable volume, lots of CPAP machines. When I was 7-8, I had a year long perioid where I had sinusitis the majority of the time. My mum saw an ENT but they weren't interested in doing anything and she was very against me missing school, so I never missed a day. Eventually the sinusitis went away, but I still had issues breathing through my nose and extremely persistent brain fog. When I was 10 I convinced my mum to take me to a GP for the brain fog and had some basic tests done but it was shrugged off. A year or two later I saw another doctor who was much more thorough. First they found low iron. I received an iron transfusion which made me extremely ill for a week and changed my diet which has kept levels fine since then, but that didn't seem to make a noticeable difference. I was referred to an ENT who was shocked I hadn't already recieved an adenoidectomy and turbanate resectioning. He pointed out that it was so severe my facial bones above my sinuses had been pushed out noticeably. The surgery helped me breathe better but didn't resolve the fatigue. I had a colonoscopy, CT scan of brain, two sleep studies and many other diagnostic procedures from age 12-15. Around this time (~age 11-12) I started first noticing my first overt PEM after activities. I'm not sure whether I had PEM before this or not. I was a very active kid prior to the sinusitis but I became a lot more isolated and more interested in non-physical activities like computers and reading at the same time. It's hard to say what caused what. I would notice an increase in brain fog, and for the first time muscle pain after school sports days. I told my parents this, who assumed I just didn't want to do sport and in once case laughed at me. At age 14 I was referred to a psychiatrist who specialized in ADHD. I had a borderline result on the test, with the only category solidly within ADHD ranges being short-term memory, which was really bad. He prescribed me Ritalin (methylphenidate) and then later Concerta, a long release version of the same drug, in a fairly low dose. It helped me concentrate and push through the fatigue which was useful at the time and lead to my marks at school going up a lot. When I was 17/18 I completed my high school final year. I did well, but after exams I noticed I could no longer be upright all day. I would be in so much pain after enough hours in a chair or walking around that I lacked the willpower to remain upright. This was the first point at which CFS was really outright preventing me from doing things. It made me want to do things less previously and made them much harder, but I never really had to give up. Almost immediately after my exams finished, at age 18, I had an appointment with a neurologist I was referred to almost a year before. She diagnosed me with CFS and referred me to the UNSW fatigue clinic, who do CBT and GET. They were actually fairly helpful with pacing and I ended up doing my own research and not going along with the GET. Regardless it wasn't really worth the money and others who actually followed their GET program have suffered immensely. When I was 19, I started transgender HRT. I first overtly identified I had gender dysphoria when I was 13, although there were many very overt signs way before that. I forced myself to repress those feelings under the guise of figuring out after my then-unexplained brain fog was resolved, which is my greatest regret. I have gotten substantially more ill during the time I've been on MtF HRT, but it's unclear whether this is related. It's also fairly adequately explained by me not pacing well enough. At the moment, I am 20 years old. I am currently taking a term off but otherwise I do a part-time computer science degree with disability provisions allowing me to complete it online. I spend ~75% of my waking hours lying down flat. I'm able to go outside every few days as long as I budget for it appropriately. I'm generally considered moderate by most CFS criteria. I am yet to have any period of significant recovery, but I've recently started low dose abilify and am hoping that gets me somewhere.
Much better, and getting better each year. First 2 years were the worst. I credit a year of taking the antiviral Famciclovir with my improvement. Been sick since July 2017.
Gradually worse, then even more worse after getting COVID. Stopped working and over the past few years I've started actual treatment of symptoms, not just pain mgmt and things have improved. I'm much better at pacing now which helps. I'm not in the throws of grief everyday which also is less stress on my system. And I got diagnosed with OI and am on medication for it which is helping. Also MCAS. And LDN has made a positive difference too.
Was mild for about 4 1/2 years, then mild/moderate for 18 months, and now have been severe/very severe a little over 2 years due to a covid infection
I've had it since 2016 but until about 2022 it was very mild. It then got worse in 2022 (when I got diagnosed) but still was mild/moderate but it kept getting worse. I'm happy its still moderate and I can go outside in my wheelchair but my life is definetly a lot different than before 2022 but I hope it won't get worse. I found my peace with it but don't know how I could handle being severe.
10 years, started mild and still is. A lot of ups and downs over the years, including some weeks where I almost didn't feel it. On other times, have to work only part time and rest a lot. But the average stayed the same.
Do you get PEM often? Have you had Covid? Just trying to see what could help me and others.
Better in some ways, worse in others. It's hard to measure cause I've changed living situations a few times. I used to live with a parent who would make dinner most days and handle a lot of the household chores so I was able to use my energy to keep more on top of things like my personal hygiene. I did also work once a week but that fucked me up. I used to go out for walks, too. Because I live alone now I have to keep on top of everything myself meaning my energy is stretched more thin, and I end up having to focus on keeping myself fed so I don't get to bathe as often sadly. I also am not able to go on walks as often as I used to. However, I'm not just passing out or sleeping for 12+ hours on a regular basis - it does still happen sometimes, but not like it used to. I did also catch covid in 2021 which I'm sure lowered my baseline. I think if I were still living with my parent and hadn't caught COVID I'd be about the same or perhaps even a little better. Hard to say for sure though!
From severe 30+ years ago after encephalitis (back when “it’s all in your head” and “just push thru it” was the advice) to moderate now because I’m mostly reclusive, pace very carefully, and live a quiet life.
I got sick in 2018, got myself all the way to severe. I'm now on the edge of mild and moderate so definitely a lot better, and have been hanging out either just into the mild or just into the moderate category for two years or so. Still goes up and down but I've become much better at pacing and taking good care of myself so I don't end up severe anymore.
15 years in and I’m a lot worse. Have to use a powerchair whenever I go out. And I spend about 75% of my life in bed!
13 years in. My first year was my absolute worst (mostly bedbound). I felt stuck somewhere between life and death and I was just 23 years old. Now I can do some outings, putter, have a quiet life My 30s are healthier than my 20s were! (No apparent reason, no medication, no wonky supplements, just time) I also had improvements further at around 5 years in and 9 years in. My internist at the time told me "Most patients with post-viral onset recover within a year" I didn't get that lucky but it is a whole other level to not be mostly bedbound. My Dad's co-worker had to take 6 or 7 months off the office work after covid. He told me she was struggling like I was, couldn't walk to her mailbox. (I can do that these days but in my worst I could not) and she bounced back and was able to come back to the office job after 7 months. :) I hope your near the end the housebound days and can get back to your life soon <3 Pacing when housebound is really helpful, use timers if you can't tell yourself to go rest. (I'll do 15 mins of dishes but only 5 mins of lawn mowing and then 45 mins of rest)
Going on 18 years. It's definitely better. The first 5 years were my worst. I have regular highs and lows. Currently, though, my baseline has gotten lower, but I had a baby 7 months ago, and I'm sure the mix of hormones and not putting my needs first have contributed. Still, overall, I'm in a better state.
For me, unfortunately, CFS only gets worse with time. The only saving grace is that sometimes I am able to adapt to it faster than the decline happens and, subjectively, feel better and more capable for a while. Avoiding crashes for a long time also provides me with temporary improvements, but I am not able to do this consistently as the life often doesn’t care about my energy envelope and doesn’t pace things it hits me with.
so so so much worse. statistically women do get worse over time, which wasn’t found for men
If you're able to, I'd love some links to read more about this. - Only if/when you're up to it. Thanks for all the work you've done here on this sub! (Also, wondering now I think about it if that's likely because women tend to carry so much workload -damn!!)
here’s a great breakdown of the study https://www.nihr.ac.uk/news/mecfs-affects-women-more-severely-than-men/34277#:~:text=Women%20with%20ME%2FCFS%20tend,encephalomyelitis%2Fchronic%20fatigue%20syndrome).
This makes me scared. :< It frustrates me it isn't strictly discipline on pacing. But also luck and... bad luck. I mean, same is true for getting CFS in the first place. But it's still so scary.
i mean discipline won’t single handedly save you in any disease without treatments as well. otherwise it wouldn’t be a full on incurable disease it would just be small health condition
Thank you!
Worse in general though it does fluctuate over the year. It tends to be better in the summer (though I'm not a heat fan so I'm not sure why!?) and worse in the winter. I started out mild and I'm now in the moderate / severe border. It did seem to be specific events that knocked it down though; a change of medication (citalopram to sertraline) and getting covid rather than a steady decline.
I've been getting gradually worse for about 10 years. No known cause. I'm now severe.
I’m pretty much the same after 5 years, only I’m better at pacing now. I’ve also found supplements that help.
I’ve had it four years (sorry I’m cheating and answering your question ;) ) I’ve just gradually gotten worse.
I’m definitely worse than my first year and my onset was 14 years ago. I had great insurance back then, and was seeing every specialist I could, getting every test I could, and doing whatever treatment I thought would help. For me, none of it helped much, unfortunately. And pacing was the only thing I found that worked, and I didn’t embrace that until about 10 years ago. Back when my CFS onset, I was still working. It was tough but I was able to for a bit. Then, it got worse, and I had to quit my job. I haven’t been able to work in about 12 years. I did do a 2 day CPET back when I was barely able to work, and the results were horrifying but basically confirmed exactly how I felt and what my doctor thought was going on. And I’m even worse than when I did that test years ago. I’d say I’m at “moderate” now. Mostly house/couch bound but I did learn to pace, and that’s been helpful in not getting *as many* bad CFS crashes. (A bad car accident was the trigger of mine)
When it started in 2015, I was in excellent physical condition, so it took me some time to realize the connection between exertion and post-exertional malaise (PEM). Initially, I suffered from very intense pain but made significant progress by stopping physical activities, addressing untreated Lyme Disease from late 2014, replenishing my critically low B12 levels, and starting several medications for pain and fatigue. However, I never fully recovered, and my health began to deteriorate over the years. After 4-5 years, I became housebound and remained until I underwent spinal cord surgery last January for Occult Tethered Cord and Arachnoiditis. Since the surgery, I am improving, and my average daily step count has increased from 800 to 4400. I still deal with PEM to some degree, but nothing like before. However, it's still uncertain whether I will fully overcome CFS/ME after 9 years of living with it.
I’ve had it 9 years. First two years were the worst. I was in denial of my limitations and in a constant push/crash cycle. After two years of that I went to part-time work and I solely started building myself up by aggressively resting. I would consider myself mild but I sometimes feel moderate to severe when in a flare up, which happens less regularly. Because I improved my baseline I decided to get pregnant and had a child five years ago. I do not feel that it has drastically impacted my health one way or the other except I just don’t have as much time to rest if I’m in a flareup.
I suspect I've had it for more than 5 years (hard to tell though because I also have sleep apnea). I don't think Ive ever had any improvements... once I caught Covid in 2022 I went from mild to moderate for a few months, to now solidly in severe and still deteriorating (either that or something really sinister is happening in my sleep).
I've had it more than ten years now. Was mild at first, progressed over a period of years into moderate/severe, stayed there a few years. Figured some stuff out and have since been on a slow progression of improvement since then. Still aiming for full recovery, goal of this year. Mine is not caused by virus or bacteria, but is nervous system driven.
I had this for 9 years ish but hear me out: Got it and became gradually severe and stayed severe-mod for 2 years: got antibiotics and was in remission for 5 years Then got a new infection and got severe again, got antibiotics after 2 years once again and now I’m mild and been mild for 6 months and I’m gonna travel this month to a different continent 😊 At my worst I couldn’t speak more than 5 words a day ish but would still crash from that, could barely go to the toilet that was placed 3-4 m away from my bed
Continual decline
You may just have long Covid. I’m 11 months in. Was bedbound for about 5 months. Still get legs like jelly and hideous brain fog. But I’m better than l was a few months ago
I have pem though w flu like malaise as a main symptom I thought that meant it’s cfs. Interesting though my long covid doctor thinks it’s LC and just a maybe w cfs.
So do l. I’m still getting better though.
3 years, only started progressing last year
Been sick 8ish years, and Im roughly the same, Ive fluctuated a little, but still staying within moderate
Worst I've ever been . I'm almost 4 years in
Mine started 9+ years ago, worsening ever since. I was already working part time, and I was able continue at my job for 4 years (with ever increasing accommodations) before having to stop due to deteriorating health. I had no idea of what condition I had or how to pace in the beginning. I knew I couldn’t run anymore, but I kept trying to keep fit in other ways (weight lifting, walking, yoga). Little did I know that I was chipping away at my baseline with each PEM. I knew big crashes were bad, but I underestimated the cumulative effect of all the really small ones. I *thought* I was fully returning to baseline after each bout of PEM, but the effect was much more subtle, especially in the early years. I liken it to transferring olive oil from one bottle to another. The longer I let it drain into the new bottle after each PEM, the more I keep…but for me some is always lost. If I have to switch to a new bottle soon after the last switch, even more is left behind. At least that’s how it works for me. Unfortunately, it took me *years* to figure it out because all the doctors here are useless and willfully ignorant. Now, I’m housebound with LOTS of resting lying down and trying very hard not to deteriorate further because, for me at least, my baseline is a finite resource.
it's hard to pinpoint my "first year" bc i went undx'ed so long, and bc i didnt develop it suddenly in response to a trigger. so if we're being literal, I'm much worse than my "first year" bc whenever that was, i was so mild i didnt yet realize smth was wrong medically (unfortunately for a long time i and othera blamed weight and i developed some significant psych issues from it). however, if we mark my "first year" as the first year it actually became DISABLING, when i started beating down drs' doors trying to get them to listen and help me, when i started getting tests for everything under the sun and doing my own research for answers, I'd say I'm better now (and tbc even at my lowest point I've always been considered clinically "mild" so i cant speak for severe sufferers at all!). right this minute, im better but poor bc i got stuck in a job that was terrible for my CFS and even just 2 months of it caused a lot of relapse, but before that job i was the best I'd been since it first got really significant! that improvement boiled down to learning pacing/my own unique needs as well as the right set of meds. it did not improve all on its own and i imagine if I'd continued without those factors (ESPECIALLY the pacing stuff!!) i would have gotten much worse. ETA the symptoms first became barely noticeable around 13, were mildly disabling at the start of my sophomore year (15), and by halfway through my junior year at 17 they were severe enough i was forced to drop out of high school altogether. junior year was my worst CFS year easily, but after that we got me onto sleep aids for my insomnia, so once i was sleeping enough and not waking up at 6am every day, i was still doing poorly but stabilized. i got NOTICEABLY worse around 18 after a case of strep throat of all things (not even rheumatic fever! JUST strep??) and for a while was almost as bad as before i dropped out, but this was also when i finally started finding answers and learning to care for myself, so it's mostly been gradual improvement since. I am now 25, to give you that full timeline!
I was better because I learned how to manage it and my limits but then I've gotten worse lately.
I think neither worse nor better, but I know my capabilities and limits better now. My mood is also better which allows me to better assess what I can do to feel better and know what the risk is with less bias toward making myself suffer and beat myself up about it when PEM hits. I schedule days to deal with PEM when the risk is there from the amount of energy expended.
8 years later and my life has improved. Going from a back and forth of being bedbound to being able to do a few dishes and cook dinner but not enough energy to stand up in the shower and wash my hair for the first 4 years was horrific. Then being able to do short walks, grocery shopping, brushing mu hair, play videogames (holy shit brain dog made that impossible before and that was always my free time pleasure.) I still think of random memories when my partner was listening to prog metal and my brain couldn’t handle such fast music with multiple Melodie’s packed into a single song causing extreme distress. And not being able to understand how medically there was nothing wrong with my body and brain yet how could I go from a person juggling two jobs and still being able to go on long walks and socialize afterwards . To then being a shell of a human after getting a virus. Now I can go on long walks, I work enough to not worry about bills being overdue (job is one I sit and talk all day so that def helps), I go to museums, got gym memberships when there was a deal happening and I haven’t slid back in abilities like I had before. The PEM is no longer a worry but I still never ever push it. It’ll always be that fear of anything can happen. I still am frustrated that I kinda plateaued but I feel guilty knowing that I am lucky it didn’t get worse. But I’d like to work full-time, I‘d like to go hiking, I’d like to travel, I’d like to start doing marathons. Past three years I’ve been at 80% give or take which is at least enough to be human. Idk what caused improvements, I did edibles and was prescribed gabapentin in 2020 and it could all be a coincidence but I think having something numb the nervous system could be a correlation but we will never know because I never had a medical professional take me seriously, just a decent therapist giving me the gabapentin script for the “anxious behavior“ AKA expressing the hopelessness of not getting closure for why my body starting to glitch on 2016.
I am at year 11 I think. I am worse than first year, but mostly because of covid, but also because of stress ( I work from home at a family business and the busy seasons are too much for me). That said, I don’t feel that getting back to more of a mild version is totally out of reach ( say if I were to win the lottery and be able to retire ), but I don’t think my orthostatic hypotension which was dramatically worsened by covid will ever go to what it was. I’m on large medication doses for it though so perhaps I could improve enough that with the medication I could be similar in function…. I dunno. I could also easily say that I have slipped down ward with every year but that it has been gradual aside from covid.
Went from severe (6 years) to moderate (about 3 years) to mild (2 years). I have no idea why I improved. I'm still pretty limited as work now takes all of the small amount of energy I do have.
About 18 years in now. It’s was a gradual decline for first few months, to the point of moderate. The bouts of severe for a few years. Changed my diet 3 years ago and started taking pacing seriously. Am now mild.
I was in the beginning of mild now I’m closer to moderate after getting Covid. So, I’m worse off. I had Covid over 8 months ago.
It's been 4 years for me now not quite 5 but it's improved most of the time. There are flare ups and improvements might be largely due to learning how to pace but my quality of life is better now regardless.
30 plus years here ! Woohoo! Sorry you had to join the cfs club It’s a bit worse now because I’m also in my 50’s
Worse. I've had it my whole life but it started getting bad in my 20s but now in my 40s I can't leave the house and am mostly in bed and haven't worked in 6 years and it feels like it's getting exponentially worse 😭
I was really sick but not bed bound the first year. Quit my part time job and school for 6 months, then returned to university and finished, lots of PEM the whole time. After I graduated, I worked 4 hours a day as a teacher's aid, and spent the rest of the day lying down in a daze, sort of feverish and in pain. Then my now-husband got a better job, I started working only a few hours a week (with adults), and I improved. So by year 5, I was better. Most was that I was not constantly radically overdoing, but some was that several things that were a pain in the beginning went away (hands suddenly swelling, face sometimes swelling, etc). Now it's been more than 30 years. I am much better. Most is from high doses of bio-identical progesterone, that I went on after remission during pregnancy. A combo of LDN and Mestinon boosted me again, and reduced pain. Eliminating gluten got rid of the daily feeling of flu and some other things (though PEM brings them back). I didn't try gluten for a long time because I have no gut issues, and don't feel bad after a gluten full week - but it turns out I had to be off it for more than a month to feel the effects. And yeah, in between it's been up and down a ton. After I was feeling better, hardly working, not in school, I overdid and spent a year mostly in bed, but I recovered from that. Worked part time for years.
I was better around the 5 year mark but I was told I wasn’t “sick enough” to have me/cfs so I went undiagnosed and only realized now, after exercising myself into becoming permanently worse, that I do have it. Doctors still give me the same advice “exercise to get better” despite the fact I have PEM so bad going into the doctor leaves me in bed for 3+ days after. I guess they just think I’ve been exaggerating this whole time. So I just stopped going to the doctor at all. Just know, it can always get worse. Sorry. But 5 months to me is almost nothing. I know it must feel like a lot because of how severe this illness can be. But I tested positive for my virus cytomegalovirus for 2 years straight. You may have active infection for longer than the textbooks say and so the recovery will take a long time. This is actually common but people are gaslighted so much, they won’t even study people properly due to the stigma. Don’t assume your symptoms right now are me/cfs. I don’t believe they are automatically, you aren’t even supposed to be diagnosed with me/cfs until after at least 6 months of illness. I’m going to say that it is closer to “long COVID” in the literal sense as in you could have active infection for longer than normal, but that doesn’t mean you won’t (hopefully) recover. You may never actually have post viral illness or not for long. It sucks that doctors are so ignorant about diseases that last longer than the textbook narrative. Just rest for now. It’s good to be in this community and follow recommendations so that if you are at risk of developing me/cfs you decrease the chance by avoiding spending too much energy. Or if you do already have it, with no active infection anymore, you have a much better chance to recover if you avoid PEM
Thank you. I really hope it is long covid. I do have nasty pem though so I thought that makes it cfs but then people like Jen Brea had pem and for Better once cause was eliminated. People with dental infections causing it get better. Is there a covid aspect that can get better ? I don’t know and have a lot of doubts. Would be great though.
You know, it’s crazy to me this whole long Covid situation because I have suffered for 10 years being ignored by the medical system. None of the doctors I saw even knew what me/cfs was. And suddenly we have a ton more post viral illness patients and now every doctor is forced to learn about me/cfs and I bet they are in some cases just passing out these diagnosis after a while to get patients off their back. Really, you won’t know what the future will hold. 10 years zero medical care I’m still here. They told me to exercise which robbed me of my remission (it was going well but I screwed it up by over exerting) I’m worse now but still here. Every action has an equal reaction, so if I play my cards right maybe I can go into remission again by resting a lot. But I’m only even in this situation because of the lack of guidance and being told to exercise, I was a very active person well into this illness and it screwed me over. Don’t exert yourself when you are sick. You may have pem like symptoms because you still have active infection. Rest, wear a mask, use hand sanitizer to protect your immune system. Even if it is me/cfs and it doesn’t resolve in the next few years, because of people like you (thank you) we will have more research done. The main barrier to me/cfs treatment has been the stigma (like AIDs) not necessarily the illness itself. You just need to focus on surviving for now, think of it like another severe illness. Prioritize rest and trust that in a years time things will be figured out and probably be better. And if not better, we will have more resources to deal with this due to the research coming along.
Worse. But the covid isolation didn't help.
People with CFS pre-covid generally got better within the first 6 months or didn’t at all. People with CFS from covid seem to be doing better. My original CFS lasted 20 years. My covid induced CFS is better than it was but it’s easy to get a set-back and do worse for a while.
Since ME/CFS was much less recognized pre-covid and it took many years to get accurately diagnosed, I think it’s also possible that the people who got better in a year or two just never got a correct diagnosis in the first place. That makes it hard to compare post-covid and pre-covid ME/CFS progression, there’s a lot more awareness and diagnosis of long covid earlier on than there was before the pandemic with other post-viral illnesses.
I had CFS for 20 years and attended many support groups in multiple states. I was on a national list for a while, for people to call if they had CFS and needed someone to talk to. I’ve known a lot of people with CFS and done decades of reading on the research. I was diagnosed in one month. Yes many are misdiagnosed. That can skew things. It is possible that those with CFS who have gotten better are those who didn’t have it.
I've had it for 8 years. I'm better in some ways and worse in other ways. For my first year, I had fevers every night. That eventually stopped. My fatigue was also much more extreme and constant. But now I have so many health issues that have worsened/developed since I first got sick. The extreme muscle/joint pain, debilitating sound sensitivity, and hyperPOTS didn't hit until the second year. I've been able to make some things better, while others have gotten worse or newly developed (like now I have mitral valve insufficiency I didn't have before). I also developed TMJD and trigeminal neuralgia, plus my migraines came back that I hadn't had in years. Thankfully, I've found things that help with those, but they only work so well. My MCAS is also very inconsistent. I go through periods of gradual improvement and then I'll suddenly wind up in a situation I can't get out of that pushes me past my energy level and I'll get set back a ton, especially because I stop being able to do any PT and I'll lose the small amount of strength I had slowly rebuilt. So it's hard to say. It's certainly very different now, so definitely not similar, but it's both better and worse. I've had years that were way worse than the first year, and years that were way better.
Diagnosed in 2018 but I can’t pinpoint exactly when the CFS started because I also had chronic fatigue as a symptom of severe Ulcerative Colitis. Since then, I’ve only gotten worse. I’m not bed bound but I’m basically housebound.
That’s rough to have both I’m sorry. I’m house bound as well. Not bed bound at this point but usually reclined. Love your screen name :)
I've had it \~9 years. I'm definitely worse now than I was in the first few years, but it also took me a long time to understand what the illness was and how it works. I did a lot of pushing through the fatigue for the first 6 years or so—sometimes in cases where I couldn't help it, but others where I would have handled things differently if I understood the long-term cost of those decisions. I'm still technically mild, but my capacity to work and have a life outside my house is much lower now than it was in the beginning and only seems to be getting worse over time. My symptoms get worse in the hot weather though, so I'm *really* feeling it right now which might be influencing my answer.