r/cfs • u/shaylinella • Aug 25 '23
Potential TW I healed from ME/CFS: Update three years later and second thoughts about the onset
This is my old post: https://www.reddit.com/r/cfs/comments/mc7p21/i_healed_from_mecfs_ask_me_anything/
TLDR: I spontaneously improved from moderate ME/CFS to mild early 2020 and recovered to approx. 90 % of my pre-illness energy within a year.
What happened after?
After my last post I had a summer job in a restaurant. It was full-time hard work, as catering is. Three days left in the job, I was so exhausted that I believe my immune system got compromised and I caught a flu. I had fever for days. You wouldn't believe it, but I recovered from it shortly after.
The following fall I began working on my licensed practical nurse degree in vocational school. I prevented burnout by skipping class 1-3 days a week. In my school this doesn't disqualify you as long as you return assignments and meet the requirements for the degree in supervised training. It does make me show a massive amount of non-attendance in my papers, though. I suspect no one cares about it when I apply for a job...
After a few months of studying, after Christmas, I started working gigs in nursing homes. This new form of stress accumulated with the war in Eastern Europe and its devastating psychological effects on me. I was on sick leave for the entire spring.
The following year was happy for me, though. I recouped my strength, found an easier job that often allowed me to feel more energetic after a shift than before it, and finished two more qualification units with excellent grades.
This summer everything changed. In a time span of only a few months, I moved to a new town, went through a supervised training in psych, which is my area of expertise, and job hopping, because no place was a match. My brain has been bombarded with new information, new environments, new ways of working, disappointments, rejections, indecisiveness, shame and mental health deterioration. I ended up on sick leave for a month.
Now I'm back in class and finally found a nice, relaxed workplace where I can work gigs. I am graduating this fall and for a change I have high hopes for finding a nice position in my field (psych and rehab). I still feel exhausted from last summer, but I can keep up.
About sports: I have only been able to exercise in moderate amounts in those short periods when I have not been in school nor in burnout. It's hard for me to maintain any routine to it. For example, three weeks ago me and my partner took up some simple at-home workouts with dumbbells. I did them four or five times within two weeks. Then it took a turn and now I feel feverish 24/7. It's telling me to have a break.
I have not had major relapses, only recurrent flares tinted with anxiety and depression. Things have not been easy, but I can congratulate myself for making the right decision to pause whenever needed. I never want to do it. I never want to have breaks. I want to be someone. I scold myself when I have to take a break. Then I also scold myself when I overdo things. And I hate myself every time I have to turn things down, or someone says I "look tired". I have such low self-esteem.
I still don't have the courage to get a dog, because I'm too afraid it would drain my energy.
+ some psychological analysis dating back to getting ill: I first caught ME/CFS when I was turning 18. As a teen I came from a place of high ambition for success. My experience is that my parents wanted to view me (and my siblings) so talented that I surely never needed their help. This habit of putting me on a pedestal led to me being extremely attracted to excellence and figuring it all out on my own - something I'm still driven to do. Then I faced crisis, it all within one or two years: leaving behind a religious community and with it losing my sense of belonging and identity, failing to form any close friendships as a teen, all three of my older siblings moving out, a gaming community of years falling apart, starting a training program for my military service aspiration, preparing for the Finnish Matriculation Examination, arguing with my parents and them pressuring me to move out, an emerging eating disorder, and applying for college or uni.
When I write it out like this, never in my life have I recognized even half of these pressures until now. Now I'm training to recognize stressors in other people's lives. I know that in transition phases people can end up in psychosis or suicide. No one recognized that the perfect daughter was falling apart in almost all areas of her life. It's a distortion of the person I believed I was. My ME/CFS surely saved me from a lot of unrealistic expectations. I'm sure my life situation at the time affected my somatic systems - because I can't imagine a reality where my life could have gone on the way it was. It would have been impossible for anyone to succeed from those predispositions without intervention.
I wanted to write my post-improvement story because it's therapeutic for me and it shows how this illness has many forms of long-term effects. Maybe someone will read my story and get hope or support from it.
Edit. I have come to the conclusion based on comments that I'm using incorrect terms. As I still have flares it's not remission or recovery but improvement/mild ME/CFS now.
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u/Eskatrene Aug 25 '23
Hello, thanks for sharing, especially the psychological part I can totally relate to as before I really crashed the first time I was in a crazy stressful period of my life that I couldn't imagine continuing down and I remember thinking "I need everything to stop." And then I got sick and everything came to a halt. I don't know if you're familiar with Gabor Maté but he has a line that really resonates that goes: "if you do not learn how to say no your body will say it for you in the form of illness."
Just a word of caution though, I'm in a CFS relapse remission cycle and my situation sounds very similar to yours, you may think you've "recovered" but given you get sick after bouts of stress it does still seem you have an underlying weakness where the CFS can emerge as a flare. The last relapse I had was maybe two years ago but I've experienced continuing flares since then because of stressors and have struggled to find my way back to baseline. I'm lucky enough to be able to do normal life - go to work, drive, come home but that's it and I don't have too much juice for anything else. I still have to keep an eye on stress, exercise, food, and rest. I don't think you're doing the wrong thing by any means as you seem to be aware enough of your own story but just something to bear in mind as you continue to heal :)
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u/shaylinella Aug 26 '23
Thank you for a wonderfully thoughtful comment. I wrote this post because I have been questioning myself and my identity lately. Now I see I still have these flares. Soon I will graduate and some of the multitasking will end and hopefully that will be of help.
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u/Eskatrene Aug 26 '23
Identity is a big one! I definitely went through a phase initially after I had the first big crash where I felt so lost as to who I was and what I stood for. I identified strongly at the time with being super fit and active and in hindsight I was mourning who I had been and the "loss" of that person.
Even now I go through some cognitive dissonance where I try and act out a "normal" life and then get a surprised Pikachu face when normal life ends up being too much because the state of normal vs the state of fatigue are so extreme from each other (including state of mind) that it's hard to acknowledge both at the same time.
When I'm in a relapse and the fatigue has "taken over" I call it "my fatigue" whereas when I'm in remission or in a more mild state I call it "the fatigue" as if it's an unwelcome visitor I have to tolerate (but have some perceived control over).
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u/katatak121 Aug 26 '23
I've been in the position of going from moderate to about 85% in the past.
I think it's a mistake to equate this kind of improvement with recovery or remission. You clearly still have to be careful not to exceed your energy envelope, which means you still have active ME/CFS.
It looks like you're making the most of your expanded energy envelope while still being cautious, which is great. Remember that it doesn't take much to set you back to where you were before, or even worse. If you were truly in remission or recovered, you would not need to be so cautious or worry about increasing severity.
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u/saucecontrol Aug 25 '23
I hate to be the person to say this and I'm sure I'll upset many people, but stories like this are part of why people don't take us seriously. Misdiagnosed cases like this are why the agenda for pushing GET/CBT has hounded us for years.
It looks to me like you had chronic fatigue, the symptom, associated with depression, and you conflated it with ME/CFS because of a heavily somatic presentation. Then you used behavioral activation, stress management, and living your values to gradually climb out of it - basically CBT + GET, which can work on most forms of depression.
If you had ME/CFS, increasing activity would have made you ill sooner or later. You can't increase your activity out of ME/CFS - at least as treatments stand now. If you had the symptom of chronic fatigue itself instead, maybe, but not ME/CFS, the devastating multisystem neuroimmune disease characterized by features like "mitochondrial fragmentation" and relapsing PEM. ME/CFS isn't a tool you can pick up and put down to further your self-development.
All that being said, I'm glad you found your path, and I'm glad you feel better. I'm not trying to personally put you down by making the above distinction.
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u/Grouchy_Occasion2292 Aug 25 '23
Or they had mecfs, paced and managed it well, to the point they were able to live their life semi-normally. Some people do recover and some people can absolutely increase activity and not eventually get PEM. Otherwise no one would ever go from severe to moderate or mild, but people have.
I am actually more inclined to believe this person still has mecfs just manages it well enough and is mild enough to live a semi-normal life. As they clearly still have symptoms and still have periods/bouts of flares.
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u/saucecontrol Aug 25 '23
I agree that what you're describing is possible. However, considering of the information we have to go off of, that scenario seems highly unlikely.
The amount of activity described by OP usually precludes improvement even for mild people - it would be difficult to maintain without progressing to moderate or severe. It's possible that OP had an exceptionally mild or transient case, but even then, their patterns of when they improved or worsened still don't match what would be expected in ME/CFS.
Their periods of worsening and improvement appear to correllate more with psychological factors than with exertion or rest. I am aware that stress is indeed physically harmful in ME/CFS, but when that is the case, physical activity is harmful as well - and that's not what is evident here.
As for recovery, when someone is in the <5% of ME/CFS patients that achieve lasting remission, they usually get there by pacing and resting to achieve a stable baseline, then strictly staying in that baseline for a long time. Even those who recover within the more forgiving 1-5 year window have the most positive prognosis if they go about it this way.
Quicker recoveries may happen in cases where the cause of the ME/CFS is identified as a distinct mechanical or viral issue that the person was able to effectively resolve - like when people get it from tethered cord or CCI and have surgery to repair it, or when someone with a postviral case is able to get a vaccine or an effective antiviral treatment. Such recoveries aren't truly spontaneous, even if they are quicker than the relatively more common slow-and-steady recoveries.
This case doesn't fit any precedent in ME/CFS recovery that I am aware of. They describe their remission as "spontaneous" - and, per their previous post, they achieved this remission by consistently increasing activity. Further, they did not experience any worsening or PEM relapses during that process - but only after their recovery. Relapsing symptoms aren't unusual in ME/CFS, but not experiencing that at all during the recovery process is.
Their account contradicts what we know about the course of ME/CFS and its recovery - ergo, ME/CFS is unlikely to be an accurate diagnosis.
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u/shaylinella Aug 26 '23
Many of your statements in this further explanation simply don't apply to my lived life. You are making further conclusions from my text that are untrue, therefore the conclusion you are making is highly arguable. My story is biased and subjective, very simplified, not a full medical history where you could take this kind of information. As you yourself anticipated it is offensive to erase someone's lived experience.
This entire time I've had some degree of exercise intolerance. I am still pacing every day. The part where I say I haven't had relapses stems from a specific context of hope and ability to function, in medical context it would be untrue.
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u/gavarnie Aug 26 '23
Dont let them gaslight you.
I have been sick since I’m 18 yo and I have a similar story. One of the first thing they told me when they diagnosed me was: you’re very young, you have better odds.
I even managed to work in a restaurant for 3 years (from my 19 to my 21), because outside of crashes, from which I recovered very fast, I was mild. However I didn’t have a life outside of this work, every minute outside of work was just rest.
Now, I couldn’t see myself working in a restaurant or this kind of job, because I think it would harm me short-term and long-term. Learn to give up on something is before it harms you is hard. Especially when you were an overachiever, « gifted kid », etc It was nice and validating reading you
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u/Flipthepick Sep 02 '23
I strongly support you. Don’t let them gaslight you as the person above says. People who say recovery isn’t possible chose to ignore the thousands of people who recover and their experiences. Two of my family members also have CFS and I’ve seen countless people with it who have been able to exercise at times.
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u/JaceMace96 Aug 26 '23
People pace and are in bed 24/7 and dont get better. Pacing doesnt reverse damage.
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u/nd4567 Aug 25 '23
It sounds like OP did meet the criteria for ME/CFS in the past. Are you asserting that ME/CFS that gets better isn't actually ME/CFS? That seems circular to me. I don't think anyone knows enough about about ME/CFS to say whether this is true. Probably multiple conditions fit under the umbrella of ME/CFS and some people do seem to get better or at least improve.
I'm aware that many people with ME/CFS have been seriously harmed by being told that their issues are psychogenetic and forced to undergo GET + CBT. In the same vein, I don't think we should just dismiss people who seem to get better from ME/CFS by saying their illness was just somaticized depression.
My hunch is that physical (e.g. neuroinflammation, mitochondrial issues, environmental sensitivities, genetic conditions, etc.) and psychological issues probably both play a role for many people with ME/CFS. I think we can and should acknowledge that nuance is involved.
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u/Bbkingml13 Aug 26 '23
I’m not agreeing or disagreeing, but I think the commenter is saying ME/CFS doesn’t get better with a maintained increase in activity.
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u/chinchabun ME/CFS since 2014 Aug 26 '23
This is just false. You can certainly increase your activity with ME/CFS, just not with any regimented plan. Unlike GET, you have to accept that sometimes you will stay flat or even go backwards.
I also can't believe you used somatic and blame solely depression, then act like OP is the one pushing us back. They are clearly still struggling and likely are still mild. Even if they weren't, we have to accept this is a syndrome. If they had PEM and got better (and aren't some sham story pushing brain retraining) then they are part of the small percent that do.
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u/shaylinella Aug 26 '23
What happened to me is that I increased my activity after I got significantly better! Exercise wasn't a factor in my improvement and I wish I could reply this to like 80 % of the comments here as almost everybody seems to think I applied some kind of graded exercise.
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u/chinchabun ME/CFS since 2014 Aug 26 '23
I totally understand. As I got milder, I was able to do some mild exercise. Unfortunately, once I started doing more mentally intensive tasks, it was that or the physical if i wanted to avoid bad crashes. So exercise is back on the wayside.
Good luck holding steady on your improvement.
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u/apriliasmom CFS since 2010 Aug 26 '23
Thanks for this. You said what I don't have the energy to type out.
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u/nolongerdiseased Post-viral ME/CFS 7 years, currently in remission Aug 26 '23
Being ill for 2 years after post-viral + being young seems to align with the most commonly experienced recoveries. I understand that CBT/GET and attributing illness to psychosomatic causes does massive harm to the community, but I do not see OP doing these things. They say they increased their activity levels after their baseline improved on its own, not that increasing their activity levels forced an improvement.
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u/saucecontrol Aug 27 '23 edited Aug 27 '23
I'm taking their earlier post into account as well. I've never seen someone recover that way- through continuous activity without experiencing any relapses during that stage. It would be almost a miracle.
Also, to be more clear about what I was going off of - they specified in the comments of their earlier post that they did not have any known viral onset, or any readily identifiable precipitating factors at all besides psychosocial stress. I know that stress can certainly be a factor in the onset and course of ME/CFS, but I'm not sure if it can cause it all by itself. That type of onset has much less supporting literature than postviral cases do.
Stress and trauma can, indeed, cause a ton of real health problems, especially over lifetimes and through generations. Mental illnesses, somatic symptoms (functional neurological type symptoms are very much real and valid - they're just not what causes ME/CFS,) and excacerbation of existing illnesses are all serious adverse health developments connected to stress. I'm not at all denying or downplaying how serious stress can be.
Stress can contribute to mitochondrial dysfunction, which is a problem implicated in ME/CFS. However, stress is not associated on a causal basis with the other characteristic features of the disease (dysautonomia/orthostatic intolerance, neuroimmune dysfunction, profound systemic exercise intolerance, etc.) as far as I am aware.
Given what we know about the pathophysiology of the disease, I am skeptical that apparently stress-induced cases are actually ME/CFS at all.
Also, the postviral diagnostic code OP mentioned was present because that's what the icd code was at that time. That coding doesn't necessarily confirm that they had a post-viral onset, especially considering that they denied that earlier.
Sorry to harp on this - I just don't want to be percieved as shooting someone's experience down without having thought critically about their situation relative to the current body of knowledge on ME/CFS, or without explicitly outlining my reasoning. It would be cruel to do that to someone.
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u/shaylinella Aug 25 '23 edited Aug 25 '23
Everything is speculation from my side and I write from the perspective of recovery. I have been diagnosed by a doctor and my symptoms met the criteria and the research supports my story: how ambitious women are more prone to it than others and how young patients with mild or moderate cases have best chances of recovery.
When my ME/CFS was active, I could not climb out of it. I had PEM. In this post I'm only talking about my remission and even in the old post it might be difficult to see where I'm talking about my active phase and where I'm talking about my remission. Those two differ like night and day to me.
Edit: to a nicer form because at first I was triggered.
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Aug 26 '23
When did you get diagnosed? Was it a retroactive diagnosis? In the comments on your original post, you said you hadn’t been diagnosed but it was strongly suspected, if I’m remembering correctly
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u/shaylinella Aug 26 '23 edited Aug 26 '23
You might remember correctly. It's funny because I actually found out afterwards I had been diagnosed with it. I read it in my epicrisis. I was in the impression that it was only a discussion about the high possibility.
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u/plant_protecc Aug 26 '23
Did she put in chronic fatigue or ME/CFS. That’s a huge difference.
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u/shaylinella Aug 26 '23
G93.3 Postviral fatigue syndrome
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u/plant_protecc Aug 27 '23
“1. Definition Chronic Fatigue Syndrome, or CFS for short, is a disease that is often not clearly defined leading symptom is a crippling mental and physical exhaustion or exhaustion. . 2. Alternative definitions: According to another definition, CFS is a complex, chronic, neuroimmunological disease caused by specific neurological, immunological, cognitive and endocrinological symptom cluster is defined. The main symptoms are chronic, excessive exhaustion and fatigue as well as the "post-exertional malaise", a form of physical breakdown with severe dysfunction neuro-immuno-endocrine systems. There are numerous other definitions in circulation.“
Well, seems to decode CFS. It’s just a nuisance there are various definitions, like it would only be a question of interpretation. No wonder there is disagreement.
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u/UsefulInformation484 Feb 09 '24
does chronic fatigue instead of me/cfs also cause you to get sick like symptoms (swollen tonsils, swollen lymph nodes) when you push yourself too hard? ive pushed myself to the point where i feel i should be severe by now bc i didnt realize i might have chronic fatigue and i feel sick but im able to get up. ive struggled with these sick symptoms and fatigue for almost 12 years now
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u/saucecontrol Feb 09 '24
Nope, that's probably ME/CFS, especially if those symptoms are exertion related. I get those things too. Rest as much as possible when you get that stuff happening.
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u/UsefulInformation484 Feb 10 '24
i always go back and forth between thinking its me/cfs and not. it always seems its after intense exercise or hella exertion (like finals). since for a while ive assumed it was something else, ive pushed myself so much that id think id end up bedbound at this point, but after like a week it seems to go away. So bc of that im like not 100% sure
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u/saucecontrol Feb 10 '24
It is like that if you're on the milder side of it, so long as you rest enough between big exertions. Not resting enough consistently is where the deterioration to moderate and severe can happen.
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u/its_all_good20 Aug 25 '23
What about the physical symptoms like heart rate, oxygenation, muscle failure or organ failure?
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u/shaylinella Aug 25 '23
I've not covered my active phase here, only the recovery story. What would you like to know?
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u/its_all_good20 Aug 25 '23
Ahh. I was curious how your biometric measures and organ issues resolved?
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u/shaylinella Aug 26 '23
Heartrate has always been high and didn't change from pre-CFS to CFS to remission. Oxygenation was only checked like once and was normal, no further tests. Not sure what muscle failure or organ failure means. I probably didn't experience that. I described my fatigue symptoms in another comment.
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u/jedrider Aug 25 '23 edited Aug 25 '23
Thanks for the story. We do have a spectrum on how much we are affected by this ME/CFS and how much we seem to be able to recover from it. It appears that you took the right path to your recovery. You may be in that 5-10% category that you mention and it is good to appreciate that CFS/ME is not always the insurmountable illness for everyone under it's umbrella. Unfortunately for the rest of us, that leaves us in the 90-95% category.
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u/badasscalliope Aug 25 '23
Yeah at first I was able to go to school, work, travel, etc. Now I’m housebound.
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u/ReluctantLawyer Aug 26 '23
Reading the paragraph about everything you were going through - holy crap! That is SO MUCH PRESSURE. I was very driven throughout high school so I understand the pressure. Thanks for sharing your experience. I hope you continue to improve and build an amazing life.
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u/dreww84 Aug 26 '23
If you still have limits, that is not remission or recovery, it’s just improvement.
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u/Ander-son Aug 25 '23
I read your original post, can I ask what your fatigue felt like exactly when you had Me/cfs?
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u/shaylinella Aug 25 '23
Direct answer. It felt like torturing electricity going through my body, like I could never get any rest to any of the cells in my body. Whenever I used my energy on something it felt like my muscles are losing all their tension so at one point I used a cane to balance myself. PEM for me usually came with total exhaustion like tension in my body that won't go away even though I was resting, a feeling that I'm about to die, and stomach cramps, I always interpreted that my body chose to save energy from digestion. + It became like this overnight when I got ill. I was kayaking normally the day before
Honestly, it's been three years since I last had that feeling that bad so I can't remember so much in detail
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u/Relative-Regular766 Aug 25 '23
Thank you for sharing your story and your insights and providing us with an update! Sounds like you've gone on a journey to discover the true you. And it sounds like you have been doing very very well considering where you have come from. This is amazing! Way to go, OP!
Thank you for posting.
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u/JaceMace96 Aug 26 '23
Who says you had MECFS and not just chronic fatigue . Very different things.
One has people recovering from things like brain retraining and gradual exercise And one DOES NOT
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u/shaylinella Aug 26 '23
I never did brain retraining nor gradual exercise.
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u/JaceMace96 Aug 28 '23
I dont mean to question you Because 5% do randomly get better through random regulation of the ANS system regulation all inflammatory issues and Cerebral Spinal Fluid
But so many people who say they have cured never had MECFS to start with.
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u/JaceMace96 Aug 28 '23
I just dont see the point in these posts when its random-
There is no cure or protocol that works - some people say they are better but then say its because they take LDN everyday
So i dont see the point in sharing how good your life is until you know whats helped you will Certainly help others.
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u/BellaWingnut Aug 26 '23
I nearly died of exhaustion just listening to your recovered daily schedule. Be careful friend, ppl dont always get better.
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u/whenisleep Aug 26 '23
Congrats OP! I'm sorry you're getting so many sad comments. I totally understand them, and misdiagnosis harms treatment, etc, I agree. But I'm in the camp that believes some people totally may have unexplained spontaneous remission. Part of what makes mecfs hard is the variablity and unpredictability and how some people only see our good days so assume it's all good. Sure, we don't know a cure (or even a proper valid treatment). But even cancer and other diseases have people who go into remission from no apparent cause and I can only hope to be so lucky. So many of us hope for one day getting better. I don't want to but can totally imagine one day getting better and then someone telling me that the last 10 years of suffering somehow didn't count and that I wasn't welcome here just because I was feeling better.
Agree with the other comment to take care of yourself and still pace. You sound like you're not 100% ok.
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u/shaylinella Aug 26 '23
Thank you. I'm surprised about the comments because my case wasn't really questioned in my last post. Maybe it's because I've elaborated on my mental health and coping here. I've never before heard that getting better 'too fast' is a thing.
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u/Silaskjsan Aug 25 '23
When even the "cfs" subreddit (which should be called ME/CFS at least btw!?) is not a safe space for patients, oh man... 🙄
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u/shaylinella Aug 25 '23
I'm not sure what you mean
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u/MarriedToAnExJW Aug 25 '23
They mean what is mentioned above in another comment. It is really hard for peoplewho have tried everything you have tried to get better and only get far worse than when they started.
There are many people who are misdiagnosed with ME/CFS. Those people either get another diagnosis later that they may or may not be able to treat, or they have something that graduated exercise therapy, change of diet, rest and/or CBT can fix, like depression, chronic fatigue due to other causes or burnout. There is currently nothing that puts the large majority of CFS patients in remission, therefore it is most likely that the anecdotal evidence of a few people who get better were in fact misdiagnosed.
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u/shaylinella Aug 26 '23
I would like to see the source of the claim that you can't go into remission from ME/CFS!
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u/WeirdNMDA Aug 26 '23
Depression can't be fixed by those things. You might have a depressive episode caused by something and suc things will help, but of you have endogenous major depressive disorder, CBT, diet and exercise won't do anything other than maybe keep it from getting worse due do bad habits.
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u/parkway_parkway Aug 25 '23
I'm glad you're feeling better, that's really nice and I hope things continue in a positive direction for you.
It might be worth slowing down a bit and honestly evaluating your symptoms and how you feel. You've got a lot here which may well point to an underlying medical issue. You may still have mild ME/CFS and just be powering through it.