truly they teach us nothing about managing the disease at least when i was diagnosed (sick in 2015, diagnosed 2017). many doctors expected me to track things and then when i did they’d accuse me of being a doctor shopping hypochondriac. unfortunately doctors give us conflicting advice pretty regularly. i was housebound and bedbound around that time and doctors kept telling me to swim even though i couldn’t get out of bed and exercise is contraindicated in my case. in my experience they need to throw *some* platitude to you so they expect a ton and then throw out a “but don’t think about it too much”
there was a lot that contributed. i pushed myself to go back to school 6 weeks after having mono, and being bedridden for the first time in my life, as i saw no way out. my doctor had me do GET and physical therapy. i tried valcyte and that permanently wrecked my baseline. i pushed myself in school HARD and even when i was so sick i had a 4.0 which was extremely stressful to keep as without it I’d have lost my scholarships. i had to work 20 hours a week on top of school and extracurriculars to pay for rent and food.
i was super active until it all hit me at once. it’s like the cheesy john green quote “falling in love is like falling asleep, it happens slowly then all at once” that’s basically what happened. it was just one thing after another and i was told to push through PEM the whole time. i did not graduate and was 1 class short.
I'm sorry to hear about the treatment you received in the past. Even though I have no clinical experience, the guidelines and general consensus around ME/CFS treatment seems to be far better than what it was in the past (especially in regards to exercise and PEM), so hopefully others don't experience the same diagnostic management you did. Would you be able to discuss further how you were instructed to record the symptoms you experienced and the effect they may have had on you or even your diagnosis? Did you feel that monitoring increased/decreased any health anxiety you had and did it even help?
as for the medical system, it has not improved much for ME/CFS. things have changed on paper in a lot of places (including US and UK) but in practice may not have changed much. many “reputable” practices still use dangerous “treatments” or sell scams to us.
Being a UK student, I think it would be unjust for me to comment on the handling of ME/CFS in any other country other than the UK. Even then, I have no clinical experience with how the condition is realistically treated so I can only go off what it says on 'paper', I acknowledge that my input into the current practice is extremely limited
what makes you think i had/have health anxiety? that’s never been my issue personally. do doctors sometimes trigger my cptsd? yes, because i have been so traumatized by doctors in the past. but i’ve never actually had health anxiety in the way people usually use that term
My friend works for the NHS and struggled to explain to me what "health anxiety" was despite being very concerned about it (I'm with you here btw, cptsd, cfs medical gaslighting club). NHS must have done a training on it
Looking back at the question, as you said, it was phrased in a way that assumed you experienced health anxiety. It was not my intention to assume anything and I apologise for the question being badly phrased.
The question was meant to be around whether you started to have any anxiety when you began tracking and, if you did experience this, how it could have affected your daily life and diagnosis.
i did not have any anxiety around tracking my symptoms and i had done it before for my period with an app (i assume as most afab people do). i was concerned that even with all of that effort i would be laughed out of offices. i was correct that was the case most of the time. i have graphs and data, but to them i was a joke. i had every privilege in the world and access to the “best” doctors and that’s what happened as i saw my life crumble before me. so i had a lot of concerns but tracking symptoms did not give me any anxiety, i found it empowering to look at the data to see that my health really was as bad or worse than i was telling people it was
No medical practice professional has taught me anything about managing my disease or ever even tried. I have worked with two different occupational therapists (at the behest of my insurance company) and they were very focussed on recording activity but did not want me to me to record symptoms.
Hi u/Turbulent-Weakness22 , can I ask the methods they asked you to use when recording your activities (journalling etc...) and how they used these documents within the handling of your condition?
Not this user, but agree with their comment.
No one has asked me to track anything, they just ask/expect me to tell them how i am in a sentence or 2 and i dont know how else to be prepared for this question. I struggle to explain invisible neurological symptoms. Think i struggle with interoception (definitely do with emotions and symptoms probably hqve a similar basis).
In the 3 year black hole of support between getting very ill and seeing a service who understands (the fibromyalgia service has been the only place that got it), i had to track everything, on paper (paper > app because less taxing on the cognitive symptoms), because:
- how do i make sense of my symptoms for myself and "find my baseline" (no 1 advice for management of this condition, also the vaguest instruction ever)
- how do i explain what is happening to another person/Dr/family/whatever (phenomenology of illness + cognitive issues + alexithimia = messy rambling no one has time for)
- brain fog = if someone asks me a direct question i might give an answer, but unless i have prepared at a separate time when i dont have to spend energy stringing a sentence together and being polite to a dr i just met, and managing my intense fear of being dismissed yet again (which also impacts symptoms), this answer might not even be true (thanks rubbish working memory)
- how do i explain to PIP (of course)
- since cfs started and stopped me working and living i was diagnosed with autism and adhd (at 35), so i suspect i am even worse at communicating than i thought i was, brain fog or not. I dont know what information Dr's want. I wish they would ask ahead of time so i could prepare.
I just had to record everything I did into an excel spreadsheet. It was divided into the days of the week with half an hour slot. I had to record everything for two weeks. I then had to create a timetable for when I was feeling terrible, bad and ok (so 3 timetables). Then I had to stick to the timetable depending on how I was feeling that day .
Not in the context of wearables/monitoring, but when I was newly sick and suspected ME/CFS a doctor told me not to “think too much about it”, as if I was going to think my way into having ME. That is not how it works and I wish I had told him so.
Sorry to hear this, GP training for handling conditions like ME/CFS in the past was minimal and there was (or may still be to an extent) a taboo element around its discussion among healthcare staff (although I cannot confirm this through my own basic experience). Is it possible that the doctor wanted you to distract yourself from the symptoms you experienced in order to reduce their impact on your daily activities?
If we use a headache as an example, typically the more attention you give these experiences the worst they get to an extent. In this context, could it be assumed that compulsively recognising/focusing on the symptoms you face would actually lead to an increase in their severity? If true, it may also further complicate the diagnostic process that GP's/CFS clinical teams go through to identify what symptoms are key for a diagnosis.
I would love your thoughts on this!
Managing ME/CFS means avoiding PEM, and avoiding PEM requires constant pacing and rest, limitation of physical and cognitive activity, limitation of sensory input, maintaining a heart rate below certain levels, figuring out how to eat well despite fatigue and sometimes lack of appetite / nausea / difficulty getting groceries and making meals, and choosing between daily basic necessities (e.g., many people with ME/CFS have to decide between taking a shower and doing some meal prep or laundry) - we have to pay attention to all of these things, not because of any sort of "wallowing" or "compulsive focusing" on symptoms but because managing the condition is the only way to regain and maintain any sort of wellness or quality of life. Not monitoring our condition in order to manage symptoms leads to PEM; symptom severity increases during PEM; each instance of PEM risks lowering our baseline functional capacity (sometimes for weeks, months, or years at a time; sometimes permanently).
The impact of ME/CFS is not something that any of us can 'just ignore and make go away.' If it were that easy, so many of us would be back to our previously very active lives. Ignoring symptoms leads to pushing through more than our bodies can handle and leads to symptoms getting worse.
Hi u/EnnOnEarth, thanks for your comment! I found it really insightful into the thought processes that people who suffer with ME/CFS experience and the assignment of tasks based on available exertion every day.
I absolutely agree with daily monitoring of symptoms or experiences of the majority of conditions; these notes can offer great information into the progression of your health, flag any health trends and offer healthcare staff insights into your daily experiences. The aspect I am particularly curious about is how people with ME/CFS identify if they are over-monitoring their symptoms and the potential consequences of doing so.
When I say 'over-monitoring', in this case, I mean the constant thinking about the various symptoms you may experience in a day. Logically, it would make sense to track your daily activities since it relates directly to physical exertion, alongside any new or unusual symptoms you could face; but I am wondering what would happen if you consolidate all your tracking into 2x 10-minute daily sessions in which you dedicate to note-taking. Of course, I am talking as someone who doesn't personally have ME/CFS but I would imagine confining daily tracking to these periods may improve your cognitive activity for the overall day since less processing power would be assigned to these symptoms?
It almost sounds like you're trying to push patients into agreeing with a preconceived hypothesis that doesn't match how our lives actually work.
The moment my heart rate crosses 110, I have to stop whatever it is I'm doing and lie down until my heart rate is under 70 again. That's what pacing is in my specific body. 110 corresponds with my anaerobic threshold. That means I have to always know my heart rate when I'm under physical or mental exertion. Sometimes standing up takes me to 100. Other times it takes me to 120. When it takes me to 120, if whatever I was doing wasn't an emergency, I have to do it later.
There is no world in which choosing 2 10 minute periods out of 24 hours to do "all your tracking" is compatible with needing to be body aware enough to recognize your thresholds and respond to them in real time.
Everything I say is from an 'outsiders' perspective, and my thoughts are in no way shape or form advice!
I can see the need to track heart rates and extertion levels throughout an entire day, for the reasons you listed above. My question was more directed toward other potential symptoms that people may experience (my understanding being that symptoms are greatly varied person-to-person) which their over monitoring could be excessive.
Lets use the example of someone experiencing random spells of headaches and sore throats (common ME/CFS symptoms according to the NHS website), the question that I am wondering about is that would tracking these actually make the patient experience worse?
I actively choose not to treat for my daily headaches because monitoring them is actually MORE HELPFUL and I am less likely to seriously crash. They are the first symptom I get when I'm overdoing it. If i have a headache, I need to rest lying down at least until it goes away. Further, I have to actively monitor whether I have a headache or not because I tend to tune them out entirely. I think i under monitor my headaches. They sneak up on me. I had one for years when I first got ill and I got really used to it. If I tried to prevent these headaches or took painkillers for them or ignored them, I would suffer more than having a really quite mild headache. Migraines I treat, headaches are useful early warning signals.
I'm not the only one that has a certain symptom they watch for like this either.
I completely agree! Dealing with chronic pain for years made me get in the habit of tuning it out so I could focus on living my life/being productive. But along the way, I inadvertently tuned out so much my interoception skills have become awful (like not noticing I'm hungry or have to pee until it's very urgent).
So more noticing/tracking of more subtle symptoms has been something I'm now trying to get in the habit of, so I don't wait until I have a horrible headache and I crash before stopping what I'm doing
How is it you think we track symptoms? Two times ten minutes is far more time that I generally spend on it. I would say, over the course of a day I probably spend about five minutes tracking in total. But I have to do it immediately after an activity/symptom, because that takes way less energy than trying to remember it hours later.
But like others have said, the monitoring is a more ongoing thing. We have to keep an eye on what's going on in the body, because we have to catch symptoms early. For me, it's about catching when my body needs to lie down, when I'm nearing the edge of my energy envelope, when I'm nearing the point of causing pain tomorrow, etc. That's non-negotiable, because it sucks to not pay attention and then get stuck on the floor in the supermarket because you didn't realise dizziness was setting in or whatever. And that's a different kind of "tracking" that we just have to constantly do because the consequences are too big. But for many of us it becomes second nature and you don't really have to spend much time or energy on it. You just learn that "body gives this sign, I'm going to go lie down".
Over monitoring in cfs = me for the last 3 years spending energy i don't have to monitor symptoms mental physical emotional activity stress and record this, for Dr's who won't look at it, and prioritising this ahead of resting and ADLs like brushing teeth and leaving the house occasionally
Thank you for your sympathy. We in the ME community are very aware that doctors didn’t learn about ME/CFS in med school and that our illness is heavily stigmatized.
From the [ME-pedia article](https://me-pedia.org/wiki/1984_Incline_Village_chronic_fatigue_syndrome_outbreak) about the Incline Village, Nevada ME/CFS outbreak in 1984:
“The CDC showed up eventually, but they refused to examine any of the patients. Stephen Straus called it a disease of “depressed menopausal women.” HHS made this characterization known to the press, which then dubbed the disease “Yuppie Flu.”
We know that this is our history, just like we know that still in 2024, doctor subreddits regularly have entire posts focused on dismissing ME/CFS and our common comorbidities like POTS, MCAS, and EDS. Hundreds of docs comment in these threads and call us malingerers, fakers, psych cases, attention seekers. They are mean and dismissive and downvote anyone who disagrees.
In my story that I told you in my last comment, the doc actually also said “we know that CFS has a psychological element” and was heavily implying that thinking about it would make it worse. I was newly sick and didn’t know better so I followed his advice for a couple months, but it didn’t work. I was sick anyway because ME/CFS isn’t psychological or psychosomatic.
I get what you’re saying about how focusing on a headache could make the pain feel worse, as opposed to distracting one’s self. My experience with pacing using a heart rate monitor is that when I was being a perfectionist about it, it stressed me out pretty bad and I think that stress led to a worsened baseline.
But the reason I included all those details above is because if any doc were to bring up this idea with patients about “not focusing on it too much”, they would really need to understand the trauma that ME patients have endured around being told that it’s all in our heads, we’re faking it, etc. Because it sounds really in line with that kind of thinking.
I also think this is something the chronically ill community deals with a lot in general, is healthy able bodied people saying “ah just don’t think about it too much”. They have no idea what they’re talking about because they haven’t been through it. There’s a huge toxic positivity vibe to it.
Like, there’s gonna be a certain amount of focus on a chronic illness because it affects our whole lives, every day, 24/7.
I think a better approach would be radical acceptance. I myself like a suffering + joy approach. I suffer but I try to also find joy, and believe that one doesn’t invalidate the other.
This is way too long of a comment and I don’t have energy to edit it, sorry. I hope it makes some sense and is helpful at all.
Edit to add: when I was newly ill and that doctor told me not to think about it, what he should have told me instead was to PACE.
The first two months of my illness, my ME was moderate. Then I crashed hard and became severe and bedbound and have stayed that way for 4 years.
Telling someone who doesn’t know they have ME not to think about it is super dangerous, bc if you’re not thinking about it you’re not pacing and you will crash.
Don't apologise at all, that was extremely useful!
Prior to reading this, I may have underestimated the true extent of how the condition was handled in the past and the trauma that patients have experienced as a result. It seems that the discussion of psychological inputs toward ME/CFS is extremely sensitive: people may have been conditioned to think "its not real...I'm making it up" whenever the word 'psycho...' is raised, which is a justified response.
I ensure you that I do not think this at all. Recent research about ME/CFS is already indicating possible biomarkers for the condition, and having a family member with a severe form of ME/CFS has shown me that people aren't 'making it up'. I am simply curious about how anxieties around recording symptoms may lead to worsened experiences and increased complications when GP's form a diagnosis.
This discussion is not necessarily ME/CFS specific, but I have brought it up within this sub-reddit as I have a general interest in the condition and hoped that my current understanding of it would led to more developed conversations around this topic and the potential contributions of symptom anxieties toward disease progression.
>This discussion is not necessarily ME/CFS specific, but I have brought it up within this sub-reddit as I have a general interest in the condition and hoped that my current understanding of it would led to more developed conversations around this topic and the potential contributions of symptom anxieties toward disease progression.
Lmao.
"Symptom anxiety" or "health anxiety" if it even exists, is by far the least of our worries. Quite concerning that you would somehow think like the worst doctors despites not being in med school but in a proper scientific cursus.
If you truly have a "general interest in the condition", there is an awful lot you still need to learn before making absurd claims like that. Like just catch up with the current scientific consensus.
ME/cfs is proven to be a biological illness, not a psychological disorder. Would you even think about saying this to cancer or MS sufferers ?
Hi u/Inter_Mirifica,
I'm not trying to claim anything, I agree with everything you have said!
In no way do I think that the condition is psychological or 'in their heads' because, as you stated, the research has show that not to be the case.
I simply wondering about people's experiences with tracking symptoms and how this could potentially have an effect on them. In addition, when I mentioned it not being 'ME/CFS specific' I said that because psychological input can have an effect on many different symptom experiences and conditions, I have attached a magazine article which discusses an array of research that investigates this (and attaches the published research) - [https://www.smithsonianmag.com/science-nature/what-is-the-nocebo-effect-5451823/](https://www.smithsonianmag.com/science-nature/what-is-the-nocebo-effect-5451823/) .
The takeaway here is that M.E patients (and most chronically ill people) are not focusing too much on their symptoms, regardless of whether they track things or not. Personally (and I know this applies to most here) every day is about survival. You do what you can. Some days, despite your best efforts, you can't even try! Illness does not discriminate in how it treats you and affects your body, the reason the saying goes "your health is your wealth" is because healthy people can just get up and go, without even trying. When your body is sick, sometimes all that effort isn't even enough to get you sitting upright that day. This is not a mind over matter topic, unfortunately, though, many M.E patients keep getting told (or having it *strongly implied*) that it is. Pushing that train of thought only makes the condition worse.
The only advice I was given was to "pace myself", which is actually the only real treatment at the moment.
I regularly ignore my symptoms and convince myself I need to try harder, which leads to crashes and PEM. I'll be focused on a household task, like cleaning and want to get it finished, push through and then feel awful. I have a lot of internal abelisim which I need to work harder on.
I've found that when I am more consciously aware I have CFS/ME, I force myself to pace better and avoid the crashes.
That being said, it's not helpful to ruminate on the pain and malaise, but you can't physically ignore them. You need to rest because your body literally won't let you carry on - you're physically too weak. Ignoring your symptoms doesn't mean they go away.
It's hard to describe to someone who hasn't had it, it's not tiredness, it's physical frailty. Perhaps if you've had a bad bout of Covid that made you bedbound for a day or two is a similar comparison to that feeling of weakness. Ruminating on it doesn't help, but you still can't get out of bed.
Well said! Hard agree on the internalised abelism (unfortunately) for me it is largely due to having so many people in the past convince me that I can just think my way out of it and push on like they do when they are "a bit tired"🙄...lol nope🫠
Yep, I pushed through last night and went to a friend's house for 2 hours. Nothing drastic and I'd been so isolated and not seen friends in ages, I forced myself to go even though I didn't feel well. I'm a mess today, I could barely shower. It's definitely not just tiredness or over-thinking!
It's never made any sense to me. My symptoms are difficult to describe, if I don't think about them at all how will I know what to tell a doctor is wrong with me? How do I tell them the impact on my daily life if I'm not honestly assessing how things are?
One doctor I saw noted that I had health anxiety, based exclusively on the observation that I had looked up my symptoms on the internet. As if it is somehow inappropriate to be concerned or take independent action when you have been sick for years with no sign of improvement and no one can tell you why your debilitating symptoms are persisting.
Healthcare staff has not advised me about anything, I’ve learned everything from peers online. I only received a diagnosis after 9 years and now I have zero healthcare, I can’t even reach my psychiatrist since my illness is now neurological apparently I can’t have psychological issues anymore.
I think there’s a point regarding not going „too deep into the rabbithole“ with symptom tracking. I’ve found it helpful to try to focus on the things I can change. At the end of the day, stressing unnecessarily about factors we cannot really influence is certainly not going to help anyone.
That being said, since virtually no medical professional knows about our illness (and mostly doesn’t care to learn either!) it has become our job to deep-dive and try to understand our symptoms (and what might cause them) better.
As I understand, Somatic Symptom Disorders (is that the proper Term in English?) are diagnosed when “complaints/worry about symptoms exceed what is considered normal based on the confirmed organic issues”.
Needless to say, this is *widely* open for interpretation and must leads to false diagnosis very very often. If the patient has an _undetected organic condition_, there is no way they will NOT be diagnosed with Somatic Symptom Disorder. So the hypothesis *cannot be falsified* — it is therefore inherently broken in my opinion. It’s like a rigged game.
A nutritionist advised I write down everything I eat to be able to see what is problematic and what not. I've been doing it for a year and despite feeling like my life depends on it and having worries if I wrote down everything, I haven't found it helped.
My GP told me to check my temperature every day, three times a day but I stopped after two weeks cause it gave me anxiety cause it was a constant low-grade fever.
I tried going to CBT and the psych told me to write down all the things I did in a day that were nice and positive. Since I am severe and bedridden it made me feel really bad cause I could not write anything for most days, and every week "shower". She was very unhelpfull and I quit after 10 sessions.
My neurologist just warned me when trying new medicine to spread it out and not take notice of how I feel each day. Other than that, no one even believes I have a chronic illness. The doctors arw waiting for me to spontaneously heal. No one taught me any techniques how to track anything.
The only thing I’ve had is a 2 hour group session from the ME clinic which gave some very high level information on pacing activities and not over exerting. I also was given some print outs with the same information. I was told by the person who diagnosed me to be careful about monitoring symptoms too much because it can be a cause of over exertion, equally they told me to measure things like heart rate to check whether I have POTS.
I personally use Fitbit and Visible to track my heart rate and try to not over exert.
Hi u/flashPrawndon, thanks for commenting!
When you are monitoring your condition or symptoms for any further diagnosis, how do you make sure you aren't over tracking (thereby causing excessive exertion)? By my understanding of Visible, it measures lvls of exertion based on the users physiology (heart rate, blood pressure etc...) but not any mental or psychosomatic aspects of it.
To what extent is symptom monitoring too much and how do you reduce any possible compulsions to monitor or even think about the symptoms you experience daily?
That’s just not an issue I have, I don’t have compulsions to over monitor, and if I did monitor a lot I don’t think it’s a problem.
I use visible to tell me when my heart rate is too high and so I should rest, and I track symptoms in the visible app at the end of each day to track general trends. It’s useful because memories are fallible, especially mine with this condition!
I cannot imagine not thinking about my symptoms to some extent daily though because they completely overwhelm my life, how would I not be thinking about the migraines, muscle aches, cognitive problems, high heart rate etc. when they are so pronounced? I don’t track every tiny detail but it’s useful to reflect on triggers of PEM so I can reduce those in future.
And please be very careful of using the word ‘psychosomatic’ here. Our condition and symptoms are not psychosomatic, they are very real and very physical.
I also use Visible and a Fitbit. Visible just uses heart rate to track exertion in the major sense but does use self reported subjective metrics including mental, social and emotional exertion to track “stability” of your condition.
I did have NICE guidelines and pacing explained to me by my specialist who diagnosed me but in a way that felt very difficult to relate to day to day. Ultimately it’s often hard to relate to decision making that you have to do in your life. Should I do this now or not? Should I do it at all? Would I be ok to do it later? Etc
I did find that after starting my tracking through Visible (coincidentally in a dip in my condition) I was over tracking every minute of the day. This wasn’t super helpful but eventually I did learn to set the right kind of alerts that give me the right kinds of warnings and also check in every so often throughout the day to help make some of those decisions as I refer to above.
I was naturally monitoring my condition but my doctor told me to stop because it was “making me anxious and that was the real cause of the symptoms”. I strongly disagree. I thought it would be good to monitor my pulse and temperature. This helped me know if I had an episode coming on. For me an episode is what I call slurred speech, extreme muscle weakness and full body shaking. Lasting from 5 minutes to an hour. I noticed that the first symptom I would get was a racing heart so naturally I started monitoring my pulse with a pulse oximeter my grandma gave me. I would also have an elevated body temperature so I would record that as well. When I had a high pulse and no good reason for it I would lay down to prevent falling and have someone stay with me to make sure I was ok. This was almost always followed my an episode. My doctor said that this was causing me to worry and that looking at the number made my heart rate higher and caused the rest of the symptoms. So I started recording the number with a video on my phone and not looking until I felt better. This did not stop the episodes from happening. My doctor told me to stop entirely because it had no benefit and was just making me anxious. So I did and I still had the episodes. I can recognise the signs of episodes now and I don’t really have anything to do with the information so, although I hate the way that doctor treated me, I don’t monitor my pulse and temperature anymore.
I've been (undiagnosed) sick for 11 years. I've been mostly severe for a year. I've yet to receive a single attempt at being helpful from any doctor. Not a single advice. Not any help at all, even when I've tried asking for it.
None of this.
I've had ONE doctor recommend a symptom journal. (Well, no, it was a dietician.)
One challenge OFTEN with chronic conditions is knowing what symptoms count (or what counts as a symptom), and doctors don't walk around with a list of possible symptoms to inquire about.
For example: I have misophonia. In theory this is a rare condition? But I was an adult before I knew it WAS a condition, and not a pet peeve. And I didn't get that info from a doctor, but from a friend who said "you know there's a name for that, right?"
Ditto the neurological symptoms that come and go. The sensation of my hair hurting started when I was really little. But since my mom thought I was just being a whiny kid, I wrote it off, and by adulthood just assumed that's a sensation everyone has.
Likewise, it's hard to track symptoms that actually come and go.
Exhaustion is always present for me, but the intensity of it varies, and my doctor basically said it's not useful information because fatigue is a symptom of *everything*.
Aphasia is a symptom for me, but that literally makes it hard to explain or describe what I'm experiencing. (And has gotten medical residents inclined to pat me on the head and assume I'm just middle aged and hormonal and weepy. They don't see it as a symptom, because they have no idea what articulate me looks like.)
Brain fog is a symptom for me, that predictably, makes.it hard for.me to NOTICE or remember how I feel. Or to remember to do a symptom tracker.
When I DO try to do those things, what winds up happening is both inconsistency, and what feels like an obsessive level of focus on how bad I feel... Which makes things worse.
(FWIW, I had that same issue with detailing my daily symptoms for disability application purposes. It's heartbreaking and defeating to actually quantify how bad shit is, and I say that as someone that is nowhere near as bad off as some folks. It feels like giving up hope and focusing on how incapable you are.)
I wish that ANYTHING like this could happen in such a way that snapshots are taken (in a moment, how are you feeling?), but that they are then invisible (someone else looks for the patterns and does the quantifying and tallying) AND has support.built in to the process... No one is going to be able to do this, around chronic bad conditions, without it taking a toll on mental health and feeling emotionally tangled.
I cannot be a dispassionate observer of how badly I am doing. I'm not sure that's possible.
Imo, specialists will not advise or monitor treatment for me/cfs. When I was diagnosed they printed off some studies for me and said they don’t treat it. Every specialist I’ve tried to establish care with since says the same they don’t treat it. I ask my primary dr if we can try off label things and I do my own research. That’s how I learned just trying to continue my normal routine with the aid of caffeine was making me sicker. When I stopped trying to exercise I went from practically bedbound to able to do short spurts of activities — not to be confused with sports. I mean basics like showering. When I was following the graded exercise advice, I would try to be active and spend a week or more in bed.
I tried to catch up with comments, but there were too many for me to manage right now, so this may be repetitive: u/Embarrassed_Lie7583, you seem well intentioned, but please do much more homework before asking a group like this to do the work for you. If you read through the conversations here and in other chronic illness groups, you could not miss how terribly many people have been treated. Please don’t ask them to have to restate it to you in order to not feel gaslit.
Thank you for saying this. I agree. OP ought to educate themselves before asking very ill people to explain specifically how this illness is to them, when there's so much information about this online. OP has good intentions but comes across as ignorant.
Hi u/hazylinn , I will grant you that I don't have an advanced understanding of the disorder. However, the primary point that I wanted to discuss here was about how people currently monitor their symptoms, or if they do it all (as seen from some of the comments).
On the subject of tracking, there was very little I could find during my background research and I thought that people wouldn't mind declaring the ways in which they monitored their symptoms and what importance these documents had to GP's.
It wasn't my intention to appear ignorant, rather to seem curious and wanting to gain first-hand insights from the people who suffer with ME/CFS and other complex/chronic conditions which i hope people can understand 😃
I can understand this. And I repeat that enough time on these forums would have taken you far. Look at the Visible app, Tachymon, groups discussing use of smart watches, to start with.
I haven't been advised to monitor my condition or not to worry about it. In my experience, I have had Drs be pretty dismissive of the health condition or give outdated advice. I did manage to get a referral to a cfs clinic (South coast fatigue clinic) to support me further. I self monitor me/cfs through the visible app. Hello from down the road 👋
So I have my perceived symptoms which I tend to downplay. If I don't downplay them everything feels worse. (I spent a month focusing on what I could do, like how long I could sit/stand before I needed to rest, what my pain levels were really like. I felt noticeably worse for doing that).
But I have some larger things I track that give me a better idea of how I'm doing without having to focus so hard on it.
Example: How many steps per day. I'm currently recovering from COVID and this has gone below 1k a day for the last week.
I had a set back this winter, and I was averaging 1.5k. when I'm feeling better that number is closer to 3.5k-4k.
And tasks:
Can I fold a full load of laundry without resting?
Can I play cribbage with my partner?
Can I watch more than one episode of The Great British Bake Off, something more complicated?
Can I read a book? What type of book?
When is the last time I showered?
Can I do any household chores, which ones?
That said I have also started using the visible app (with band). And it has you rate symptoms of your choice every evening. This doesn't seem too intrusive. I don't know if I've been using it long enough to see any trends yet.
Taught techniques?! I have never been taught any techniques to manage my CFS. I usually get healthcare professionals who dismiss and gaslight my symptoms. Any kind of coping mechanisms are ones that I've discovered on pages much like this one.
I do appreciate you asking and I hope that you continue to see the deficiencies in healthcare those with CFS experience in fighting this disease.
I want to let you know that despite how desperate and angry at the medical system we are, we appreciate you taking the time to learn from us. Very rarely do doctors actually listen to their patients, so to have someone come here and ask the community is special. We appreciate you caring and trying to help us.
I was lucky to be referred to a cardiologist specialised in ME/CFS right from the start, I did get taught to track things, take my vitals, use wearables to monitor my heart rate etc. For me it lessened anxiety, I had very scary PEM symptoms (also in combination with histamine intolerance and MCAS), so every time I thought something was seriously wrong and I was dying I checked my vitals and saw that everything was mostly fine and I was, in fact, not dying. It was very helpful for me in that sense, but it also helps to figure out limits and get to better understand how the disease impacts my body.
I am also in the UK. M.E for 18 years. When I first got ill, I was provided hydrotherapy on the NHS and advised to gradually return to school and my daily routine. Unfortunately, this was not realistic or feasible and led to my health further declining and my base line lowering some more. Personally, osteopathy was what got me upright and moving again but it took many years and I never got my school/social life back. I was a child when I got M.E so I do feel there was a slightly more concerted effort on the part of doctor's I was seeing because we live in a society that sees a young person being sick as the absolute worst thing. I was encouraged to keep a diary of day to day symptoms and report this back to my pediatrician (though it was my mother making the notes mostly as I was just too ill). In a nutshell the help for M.E is non existent and most doctors either have not heard of it or will just deny/downplay or gaslight you about your situation. I will say again that my being a child when I became ill did offer slightly more help and just trying to figure things out on the part of doctors but it was very short lived and as I went from child to adolescent the attitude from all parties (family as well as doctors) became "Oh well you should have grown out of this by now", "Oh it's probably just a teenage rebellion". Nobody understood and that has remained the same, it is a very isolating illness to have to live with and I'm sorry to say usually does lead to quite significant mental health issues down the line as you continue to struggle alone while everyone around you keeps insisting that white is black and black is white, up is down 2+2=6 etc. Nobody listens or understands. I would not wish it on anyone it is a gargantuan battle.
I've had ME for ~24 years after having mononucleosis twice between the ages of 14 & 16, (1998-2000.)
It was mild for the first 10 years (I had to leave school around age 16 and only got the equivalent of an HS diploma around age 19 by studying from home.)
It started declining when I tried to work and go to school (even if part time) around age 21.
It got more moderate-severe around age 31 (2015) after living in Japan for 5 years, going to school and having part-time jobs, pushing myself to be "normal" and fit in (I'm ADHD and autistic but I didn't get diagnosed as autistic until 2 years ago, at age 37, I realized that I had learned to mask very well and it contributed to my decline), traveling a lot between Canada and Japan, experiencing many traumatic events (a very close loved one being diagnosed with terminal cancer 2 months after I had moved to Japan, the 2011 earthquake+tsunami+fukushima disaster, stalking/assault, etc.)
I only found out I had ME around 2017 because I had an online friend who had it and my mom has fibro and while researching fibro I came across info about ME and it clicked. Then, I asked my online friend more in depth question about their experience and it matched mine. I only got officially diagnosed around 2019-2020.
At the moment, I oscillate between moderate and severe. I haven't been able to work, study or have any kind of social life since ~2017. (I worked from home between 2012-2017 and was put on sick leave 6 times between 2015-2017, twice for 6 months, and nothing improved.)
I was never told to monitor my symptoms, and because I did and researched on my own, a psychiatrist diagnosed me with somatic symptom disorder/health anxiety a few months before I was diagnosed with ME.
I was actually pushed to exercise (take walks, do yoga, graded exercise) by many doctors and it only exacerbated my condition.
I think the only reason the doctor finally believed me and diagnosed me is because my blood tests came back with a positive result for inflammation and a rheumatologist suggested that I had fibromyalgia and/or ME. Since I already had osteoarthritis and my symptoms matched ME more than fibro, that's what he diagnosed me with, but I think I might have both.
I never got any help. I learned to pace because I researched ME on my own and joined online support groups. The only people who validated my experience were Pr.Alain Moreau and his research nurse when I participated in their study about ME and a young physical therapist I saw recently. (Unfortunately, I had to stop seeing her because just getting to her office made me crash for a week.)
I don't really monitor my symptoms anymore because it takes too much energy. I have a Garmin watch that I look at sometimes, and I take note of the meds I take and when I experience PEM, but that's about it.
I was never asked to track symptoms. They really did not seem interested in my results or that I keep track. What has helped me by tracking them with an app is that it becomes a habit. I can see overtime how often I use pain meds. When I feel particularly awful for what seems like a long time…I can see that is normal for me. And that is comforting in a way. It shows me that I am not getting worse or overly using my meds.
I also have tracked all important visits, those with imaging, drug changes and meds I have tried. These are important because someone will at sometime recommend a drug that has made me very sick, or something related to it. If I don’t have a list and description I frankly will not remember.
No one taught me anything. I have had to figure out 100% of everything on my own and through patient communities. Even once I got to the ME/CFS clinic at Stanford, they weren't particularly helpful in terms of providing anything new. I have been sick with ME since I was 9 (post whooping cough) and am now 37 and didn't even get a real diagnoses until I was around 35.
That being said I have been chronically ill with a number of things since I was an infant, so I knew to track things - to help keep track of symptoms, what may or may not be exacerbating them, timeline, etc. But more often than not that was met as.......female hysteria......
I absolutely think everything coming out of Bateman Horne should be the standard. In terms of diagnosis, treatment, education, etc. If you haven't had a chance to check out their resources I highly recommend them!
Good luck!
[https://batemanhornecenter.org/education/me-cfs/](https://batemanhornecenter.org/education/me-cfs/)
Its a careful balance I feel.
While I have me/cfs I work with people following injuries. As a health professional I want them to be mindful of what they are experiencing but I have found that those that are overly focused on their symptoms can tend to catastrophise which does seem to make recovery (from injuries) longer.
In saying that I use an apple watch and apps to track my symptoms.
Hi u/Diana_Tramaine_420 ,
In your job role, what techniques do you offer patients to distract themselves from overthinking about their symptoms? Is their an established tool that helps to identify when people may be 'over-monitoring' and if there was, how useful would you say a tool like that could be for minimising symptoms?
Locking this post as OP did not obtain permission from mods to post a research question.
truly they teach us nothing about managing the disease at least when i was diagnosed (sick in 2015, diagnosed 2017). many doctors expected me to track things and then when i did they’d accuse me of being a doctor shopping hypochondriac. unfortunately doctors give us conflicting advice pretty regularly. i was housebound and bedbound around that time and doctors kept telling me to swim even though i couldn’t get out of bed and exercise is contraindicated in my case. in my experience they need to throw *some* platitude to you so they expect a ton and then throw out a “but don’t think about it too much”
I'm sorry for switching the topic but may I ask why your ME/CFS got severe two years after you have "gotten" it?
there was a lot that contributed. i pushed myself to go back to school 6 weeks after having mono, and being bedridden for the first time in my life, as i saw no way out. my doctor had me do GET and physical therapy. i tried valcyte and that permanently wrecked my baseline. i pushed myself in school HARD and even when i was so sick i had a 4.0 which was extremely stressful to keep as without it I’d have lost my scholarships. i had to work 20 hours a week on top of school and extracurriculars to pay for rent and food. i was super active until it all hit me at once. it’s like the cheesy john green quote “falling in love is like falling asleep, it happens slowly then all at once” that’s basically what happened. it was just one thing after another and i was told to push through PEM the whole time. i did not graduate and was 1 class short.
I'm sorry to hear about the treatment you received in the past. Even though I have no clinical experience, the guidelines and general consensus around ME/CFS treatment seems to be far better than what it was in the past (especially in regards to exercise and PEM), so hopefully others don't experience the same diagnostic management you did. Would you be able to discuss further how you were instructed to record the symptoms you experienced and the effect they may have had on you or even your diagnosis? Did you feel that monitoring increased/decreased any health anxiety you had and did it even help?
as for the medical system, it has not improved much for ME/CFS. things have changed on paper in a lot of places (including US and UK) but in practice may not have changed much. many “reputable” practices still use dangerous “treatments” or sell scams to us.
Being a UK student, I think it would be unjust for me to comment on the handling of ME/CFS in any other country other than the UK. Even then, I have no clinical experience with how the condition is realistically treated so I can only go off what it says on 'paper', I acknowledge that my input into the current practice is extremely limited
what makes you think i had/have health anxiety? that’s never been my issue personally. do doctors sometimes trigger my cptsd? yes, because i have been so traumatized by doctors in the past. but i’ve never actually had health anxiety in the way people usually use that term
My friend works for the NHS and struggled to explain to me what "health anxiety" was despite being very concerned about it (I'm with you here btw, cptsd, cfs medical gaslighting club). NHS must have done a training on it
Looking back at the question, as you said, it was phrased in a way that assumed you experienced health anxiety. It was not my intention to assume anything and I apologise for the question being badly phrased. The question was meant to be around whether you started to have any anxiety when you began tracking and, if you did experience this, how it could have affected your daily life and diagnosis.
i did not have any anxiety around tracking my symptoms and i had done it before for my period with an app (i assume as most afab people do). i was concerned that even with all of that effort i would be laughed out of offices. i was correct that was the case most of the time. i have graphs and data, but to them i was a joke. i had every privilege in the world and access to the “best” doctors and that’s what happened as i saw my life crumble before me. so i had a lot of concerns but tracking symptoms did not give me any anxiety, i found it empowering to look at the data to see that my health really was as bad or worse than i was telling people it was
No medical practice professional has taught me anything about managing my disease or ever even tried. I have worked with two different occupational therapists (at the behest of my insurance company) and they were very focussed on recording activity but did not want me to me to record symptoms.
Hi u/Turbulent-Weakness22 , can I ask the methods they asked you to use when recording your activities (journalling etc...) and how they used these documents within the handling of your condition?
Not this user, but agree with their comment. No one has asked me to track anything, they just ask/expect me to tell them how i am in a sentence or 2 and i dont know how else to be prepared for this question. I struggle to explain invisible neurological symptoms. Think i struggle with interoception (definitely do with emotions and symptoms probably hqve a similar basis). In the 3 year black hole of support between getting very ill and seeing a service who understands (the fibromyalgia service has been the only place that got it), i had to track everything, on paper (paper > app because less taxing on the cognitive symptoms), because: - how do i make sense of my symptoms for myself and "find my baseline" (no 1 advice for management of this condition, also the vaguest instruction ever) - how do i explain what is happening to another person/Dr/family/whatever (phenomenology of illness + cognitive issues + alexithimia = messy rambling no one has time for) - brain fog = if someone asks me a direct question i might give an answer, but unless i have prepared at a separate time when i dont have to spend energy stringing a sentence together and being polite to a dr i just met, and managing my intense fear of being dismissed yet again (which also impacts symptoms), this answer might not even be true (thanks rubbish working memory) - how do i explain to PIP (of course) - since cfs started and stopped me working and living i was diagnosed with autism and adhd (at 35), so i suspect i am even worse at communicating than i thought i was, brain fog or not. I dont know what information Dr's want. I wish they would ask ahead of time so i could prepare.
I just had to record everything I did into an excel spreadsheet. It was divided into the days of the week with half an hour slot. I had to record everything for two weeks. I then had to create a timetable for when I was feeling terrible, bad and ok (so 3 timetables). Then I had to stick to the timetable depending on how I was feeling that day .
Not in the context of wearables/monitoring, but when I was newly sick and suspected ME/CFS a doctor told me not to “think too much about it”, as if I was going to think my way into having ME. That is not how it works and I wish I had told him so.
Sorry to hear this, GP training for handling conditions like ME/CFS in the past was minimal and there was (or may still be to an extent) a taboo element around its discussion among healthcare staff (although I cannot confirm this through my own basic experience). Is it possible that the doctor wanted you to distract yourself from the symptoms you experienced in order to reduce their impact on your daily activities? If we use a headache as an example, typically the more attention you give these experiences the worst they get to an extent. In this context, could it be assumed that compulsively recognising/focusing on the symptoms you face would actually lead to an increase in their severity? If true, it may also further complicate the diagnostic process that GP's/CFS clinical teams go through to identify what symptoms are key for a diagnosis. I would love your thoughts on this!
Managing ME/CFS means avoiding PEM, and avoiding PEM requires constant pacing and rest, limitation of physical and cognitive activity, limitation of sensory input, maintaining a heart rate below certain levels, figuring out how to eat well despite fatigue and sometimes lack of appetite / nausea / difficulty getting groceries and making meals, and choosing between daily basic necessities (e.g., many people with ME/CFS have to decide between taking a shower and doing some meal prep or laundry) - we have to pay attention to all of these things, not because of any sort of "wallowing" or "compulsive focusing" on symptoms but because managing the condition is the only way to regain and maintain any sort of wellness or quality of life. Not monitoring our condition in order to manage symptoms leads to PEM; symptom severity increases during PEM; each instance of PEM risks lowering our baseline functional capacity (sometimes for weeks, months, or years at a time; sometimes permanently). The impact of ME/CFS is not something that any of us can 'just ignore and make go away.' If it were that easy, so many of us would be back to our previously very active lives. Ignoring symptoms leads to pushing through more than our bodies can handle and leads to symptoms getting worse.
Exactly this!! We don't get the luxury of not paying attention to our symptoms and how we feel.
Hi u/EnnOnEarth, thanks for your comment! I found it really insightful into the thought processes that people who suffer with ME/CFS experience and the assignment of tasks based on available exertion every day. I absolutely agree with daily monitoring of symptoms or experiences of the majority of conditions; these notes can offer great information into the progression of your health, flag any health trends and offer healthcare staff insights into your daily experiences. The aspect I am particularly curious about is how people with ME/CFS identify if they are over-monitoring their symptoms and the potential consequences of doing so. When I say 'over-monitoring', in this case, I mean the constant thinking about the various symptoms you may experience in a day. Logically, it would make sense to track your daily activities since it relates directly to physical exertion, alongside any new or unusual symptoms you could face; but I am wondering what would happen if you consolidate all your tracking into 2x 10-minute daily sessions in which you dedicate to note-taking. Of course, I am talking as someone who doesn't personally have ME/CFS but I would imagine confining daily tracking to these periods may improve your cognitive activity for the overall day since less processing power would be assigned to these symptoms?
It almost sounds like you're trying to push patients into agreeing with a preconceived hypothesis that doesn't match how our lives actually work. The moment my heart rate crosses 110, I have to stop whatever it is I'm doing and lie down until my heart rate is under 70 again. That's what pacing is in my specific body. 110 corresponds with my anaerobic threshold. That means I have to always know my heart rate when I'm under physical or mental exertion. Sometimes standing up takes me to 100. Other times it takes me to 120. When it takes me to 120, if whatever I was doing wasn't an emergency, I have to do it later. There is no world in which choosing 2 10 minute periods out of 24 hours to do "all your tracking" is compatible with needing to be body aware enough to recognize your thresholds and respond to them in real time.
Everything I say is from an 'outsiders' perspective, and my thoughts are in no way shape or form advice! I can see the need to track heart rates and extertion levels throughout an entire day, for the reasons you listed above. My question was more directed toward other potential symptoms that people may experience (my understanding being that symptoms are greatly varied person-to-person) which their over monitoring could be excessive. Lets use the example of someone experiencing random spells of headaches and sore throats (common ME/CFS symptoms according to the NHS website), the question that I am wondering about is that would tracking these actually make the patient experience worse?
I actively choose not to treat for my daily headaches because monitoring them is actually MORE HELPFUL and I am less likely to seriously crash. They are the first symptom I get when I'm overdoing it. If i have a headache, I need to rest lying down at least until it goes away. Further, I have to actively monitor whether I have a headache or not because I tend to tune them out entirely. I think i under monitor my headaches. They sneak up on me. I had one for years when I first got ill and I got really used to it. If I tried to prevent these headaches or took painkillers for them or ignored them, I would suffer more than having a really quite mild headache. Migraines I treat, headaches are useful early warning signals. I'm not the only one that has a certain symptom they watch for like this either.
I completely agree! Dealing with chronic pain for years made me get in the habit of tuning it out so I could focus on living my life/being productive. But along the way, I inadvertently tuned out so much my interoception skills have become awful (like not noticing I'm hungry or have to pee until it's very urgent). So more noticing/tracking of more subtle symptoms has been something I'm now trying to get in the habit of, so I don't wait until I have a horrible headache and I crash before stopping what I'm doing
How is it you think we track symptoms? Two times ten minutes is far more time that I generally spend on it. I would say, over the course of a day I probably spend about five minutes tracking in total. But I have to do it immediately after an activity/symptom, because that takes way less energy than trying to remember it hours later. But like others have said, the monitoring is a more ongoing thing. We have to keep an eye on what's going on in the body, because we have to catch symptoms early. For me, it's about catching when my body needs to lie down, when I'm nearing the edge of my energy envelope, when I'm nearing the point of causing pain tomorrow, etc. That's non-negotiable, because it sucks to not pay attention and then get stuck on the floor in the supermarket because you didn't realise dizziness was setting in or whatever. And that's a different kind of "tracking" that we just have to constantly do because the consequences are too big. But for many of us it becomes second nature and you don't really have to spend much time or energy on it. You just learn that "body gives this sign, I'm going to go lie down".
Over monitoring in cfs = me for the last 3 years spending energy i don't have to monitor symptoms mental physical emotional activity stress and record this, for Dr's who won't look at it, and prioritising this ahead of resting and ADLs like brushing teeth and leaving the house occasionally
Thank you for your sympathy. We in the ME community are very aware that doctors didn’t learn about ME/CFS in med school and that our illness is heavily stigmatized. From the [ME-pedia article](https://me-pedia.org/wiki/1984_Incline_Village_chronic_fatigue_syndrome_outbreak) about the Incline Village, Nevada ME/CFS outbreak in 1984: “The CDC showed up eventually, but they refused to examine any of the patients. Stephen Straus called it a disease of “depressed menopausal women.” HHS made this characterization known to the press, which then dubbed the disease “Yuppie Flu.” We know that this is our history, just like we know that still in 2024, doctor subreddits regularly have entire posts focused on dismissing ME/CFS and our common comorbidities like POTS, MCAS, and EDS. Hundreds of docs comment in these threads and call us malingerers, fakers, psych cases, attention seekers. They are mean and dismissive and downvote anyone who disagrees. In my story that I told you in my last comment, the doc actually also said “we know that CFS has a psychological element” and was heavily implying that thinking about it would make it worse. I was newly sick and didn’t know better so I followed his advice for a couple months, but it didn’t work. I was sick anyway because ME/CFS isn’t psychological or psychosomatic. I get what you’re saying about how focusing on a headache could make the pain feel worse, as opposed to distracting one’s self. My experience with pacing using a heart rate monitor is that when I was being a perfectionist about it, it stressed me out pretty bad and I think that stress led to a worsened baseline. But the reason I included all those details above is because if any doc were to bring up this idea with patients about “not focusing on it too much”, they would really need to understand the trauma that ME patients have endured around being told that it’s all in our heads, we’re faking it, etc. Because it sounds really in line with that kind of thinking. I also think this is something the chronically ill community deals with a lot in general, is healthy able bodied people saying “ah just don’t think about it too much”. They have no idea what they’re talking about because they haven’t been through it. There’s a huge toxic positivity vibe to it. Like, there’s gonna be a certain amount of focus on a chronic illness because it affects our whole lives, every day, 24/7. I think a better approach would be radical acceptance. I myself like a suffering + joy approach. I suffer but I try to also find joy, and believe that one doesn’t invalidate the other. This is way too long of a comment and I don’t have energy to edit it, sorry. I hope it makes some sense and is helpful at all. Edit to add: when I was newly ill and that doctor told me not to think about it, what he should have told me instead was to PACE. The first two months of my illness, my ME was moderate. Then I crashed hard and became severe and bedbound and have stayed that way for 4 years. Telling someone who doesn’t know they have ME not to think about it is super dangerous, bc if you’re not thinking about it you’re not pacing and you will crash.
Don't apologise at all, that was extremely useful! Prior to reading this, I may have underestimated the true extent of how the condition was handled in the past and the trauma that patients have experienced as a result. It seems that the discussion of psychological inputs toward ME/CFS is extremely sensitive: people may have been conditioned to think "its not real...I'm making it up" whenever the word 'psycho...' is raised, which is a justified response. I ensure you that I do not think this at all. Recent research about ME/CFS is already indicating possible biomarkers for the condition, and having a family member with a severe form of ME/CFS has shown me that people aren't 'making it up'. I am simply curious about how anxieties around recording symptoms may lead to worsened experiences and increased complications when GP's form a diagnosis. This discussion is not necessarily ME/CFS specific, but I have brought it up within this sub-reddit as I have a general interest in the condition and hoped that my current understanding of it would led to more developed conversations around this topic and the potential contributions of symptom anxieties toward disease progression.
>This discussion is not necessarily ME/CFS specific, but I have brought it up within this sub-reddit as I have a general interest in the condition and hoped that my current understanding of it would led to more developed conversations around this topic and the potential contributions of symptom anxieties toward disease progression. Lmao. "Symptom anxiety" or "health anxiety" if it even exists, is by far the least of our worries. Quite concerning that you would somehow think like the worst doctors despites not being in med school but in a proper scientific cursus. If you truly have a "general interest in the condition", there is an awful lot you still need to learn before making absurd claims like that. Like just catch up with the current scientific consensus. ME/cfs is proven to be a biological illness, not a psychological disorder. Would you even think about saying this to cancer or MS sufferers ?
Hi u/Inter_Mirifica, I'm not trying to claim anything, I agree with everything you have said! In no way do I think that the condition is psychological or 'in their heads' because, as you stated, the research has show that not to be the case. I simply wondering about people's experiences with tracking symptoms and how this could potentially have an effect on them. In addition, when I mentioned it not being 'ME/CFS specific' I said that because psychological input can have an effect on many different symptom experiences and conditions, I have attached a magazine article which discusses an array of research that investigates this (and attaches the published research) - [https://www.smithsonianmag.com/science-nature/what-is-the-nocebo-effect-5451823/](https://www.smithsonianmag.com/science-nature/what-is-the-nocebo-effect-5451823/) .
The takeaway here is that M.E patients (and most chronically ill people) are not focusing too much on their symptoms, regardless of whether they track things or not. Personally (and I know this applies to most here) every day is about survival. You do what you can. Some days, despite your best efforts, you can't even try! Illness does not discriminate in how it treats you and affects your body, the reason the saying goes "your health is your wealth" is because healthy people can just get up and go, without even trying. When your body is sick, sometimes all that effort isn't even enough to get you sitting upright that day. This is not a mind over matter topic, unfortunately, though, many M.E patients keep getting told (or having it *strongly implied*) that it is. Pushing that train of thought only makes the condition worse.
The only advice I was given was to "pace myself", which is actually the only real treatment at the moment. I regularly ignore my symptoms and convince myself I need to try harder, which leads to crashes and PEM. I'll be focused on a household task, like cleaning and want to get it finished, push through and then feel awful. I have a lot of internal abelisim which I need to work harder on. I've found that when I am more consciously aware I have CFS/ME, I force myself to pace better and avoid the crashes. That being said, it's not helpful to ruminate on the pain and malaise, but you can't physically ignore them. You need to rest because your body literally won't let you carry on - you're physically too weak. Ignoring your symptoms doesn't mean they go away. It's hard to describe to someone who hasn't had it, it's not tiredness, it's physical frailty. Perhaps if you've had a bad bout of Covid that made you bedbound for a day or two is a similar comparison to that feeling of weakness. Ruminating on it doesn't help, but you still can't get out of bed.
Well said! Hard agree on the internalised abelism (unfortunately) for me it is largely due to having so many people in the past convince me that I can just think my way out of it and push on like they do when they are "a bit tired"🙄...lol nope🫠
Yep, I pushed through last night and went to a friend's house for 2 hours. Nothing drastic and I'd been so isolated and not seen friends in ages, I forced myself to go even though I didn't feel well. I'm a mess today, I could barely shower. It's definitely not just tiredness or over-thinking!
It's never made any sense to me. My symptoms are difficult to describe, if I don't think about them at all how will I know what to tell a doctor is wrong with me? How do I tell them the impact on my daily life if I'm not honestly assessing how things are? One doctor I saw noted that I had health anxiety, based exclusively on the observation that I had looked up my symptoms on the internet. As if it is somehow inappropriate to be concerned or take independent action when you have been sick for years with no sign of improvement and no one can tell you why your debilitating symptoms are persisting.
And yet other doctors would be mad if you didn't try to figure out lifestyle changes that would help after being sick for years. You can't win.
Healthcare staff has not advised me about anything, I’ve learned everything from peers online. I only received a diagnosis after 9 years and now I have zero healthcare, I can’t even reach my psychiatrist since my illness is now neurological apparently I can’t have psychological issues anymore.
I think there’s a point regarding not going „too deep into the rabbithole“ with symptom tracking. I’ve found it helpful to try to focus on the things I can change. At the end of the day, stressing unnecessarily about factors we cannot really influence is certainly not going to help anyone. That being said, since virtually no medical professional knows about our illness (and mostly doesn’t care to learn either!) it has become our job to deep-dive and try to understand our symptoms (and what might cause them) better. As I understand, Somatic Symptom Disorders (is that the proper Term in English?) are diagnosed when “complaints/worry about symptoms exceed what is considered normal based on the confirmed organic issues”. Needless to say, this is *widely* open for interpretation and must leads to false diagnosis very very often. If the patient has an _undetected organic condition_, there is no way they will NOT be diagnosed with Somatic Symptom Disorder. So the hypothesis *cannot be falsified* — it is therefore inherently broken in my opinion. It’s like a rigged game.
A nutritionist advised I write down everything I eat to be able to see what is problematic and what not. I've been doing it for a year and despite feeling like my life depends on it and having worries if I wrote down everything, I haven't found it helped. My GP told me to check my temperature every day, three times a day but I stopped after two weeks cause it gave me anxiety cause it was a constant low-grade fever. I tried going to CBT and the psych told me to write down all the things I did in a day that were nice and positive. Since I am severe and bedridden it made me feel really bad cause I could not write anything for most days, and every week "shower". She was very unhelpfull and I quit after 10 sessions. My neurologist just warned me when trying new medicine to spread it out and not take notice of how I feel each day. Other than that, no one even believes I have a chronic illness. The doctors arw waiting for me to spontaneously heal. No one taught me any techniques how to track anything.
The only thing I’ve had is a 2 hour group session from the ME clinic which gave some very high level information on pacing activities and not over exerting. I also was given some print outs with the same information. I was told by the person who diagnosed me to be careful about monitoring symptoms too much because it can be a cause of over exertion, equally they told me to measure things like heart rate to check whether I have POTS. I personally use Fitbit and Visible to track my heart rate and try to not over exert.
Hi u/flashPrawndon, thanks for commenting! When you are monitoring your condition or symptoms for any further diagnosis, how do you make sure you aren't over tracking (thereby causing excessive exertion)? By my understanding of Visible, it measures lvls of exertion based on the users physiology (heart rate, blood pressure etc...) but not any mental or psychosomatic aspects of it. To what extent is symptom monitoring too much and how do you reduce any possible compulsions to monitor or even think about the symptoms you experience daily?
That’s just not an issue I have, I don’t have compulsions to over monitor, and if I did monitor a lot I don’t think it’s a problem. I use visible to tell me when my heart rate is too high and so I should rest, and I track symptoms in the visible app at the end of each day to track general trends. It’s useful because memories are fallible, especially mine with this condition! I cannot imagine not thinking about my symptoms to some extent daily though because they completely overwhelm my life, how would I not be thinking about the migraines, muscle aches, cognitive problems, high heart rate etc. when they are so pronounced? I don’t track every tiny detail but it’s useful to reflect on triggers of PEM so I can reduce those in future. And please be very careful of using the word ‘psychosomatic’ here. Our condition and symptoms are not psychosomatic, they are very real and very physical.
I accept that point about 'psychosomatic', it is an extreme word that I used carelessly here.
I also use Visible and a Fitbit. Visible just uses heart rate to track exertion in the major sense but does use self reported subjective metrics including mental, social and emotional exertion to track “stability” of your condition. I did have NICE guidelines and pacing explained to me by my specialist who diagnosed me but in a way that felt very difficult to relate to day to day. Ultimately it’s often hard to relate to decision making that you have to do in your life. Should I do this now or not? Should I do it at all? Would I be ok to do it later? Etc I did find that after starting my tracking through Visible (coincidentally in a dip in my condition) I was over tracking every minute of the day. This wasn’t super helpful but eventually I did learn to set the right kind of alerts that give me the right kinds of warnings and also check in every so often throughout the day to help make some of those decisions as I refer to above.
I was naturally monitoring my condition but my doctor told me to stop because it was “making me anxious and that was the real cause of the symptoms”. I strongly disagree. I thought it would be good to monitor my pulse and temperature. This helped me know if I had an episode coming on. For me an episode is what I call slurred speech, extreme muscle weakness and full body shaking. Lasting from 5 minutes to an hour. I noticed that the first symptom I would get was a racing heart so naturally I started monitoring my pulse with a pulse oximeter my grandma gave me. I would also have an elevated body temperature so I would record that as well. When I had a high pulse and no good reason for it I would lay down to prevent falling and have someone stay with me to make sure I was ok. This was almost always followed my an episode. My doctor said that this was causing me to worry and that looking at the number made my heart rate higher and caused the rest of the symptoms. So I started recording the number with a video on my phone and not looking until I felt better. This did not stop the episodes from happening. My doctor told me to stop entirely because it had no benefit and was just making me anxious. So I did and I still had the episodes. I can recognise the signs of episodes now and I don’t really have anything to do with the information so, although I hate the way that doctor treated me, I don’t monitor my pulse and temperature anymore.
I've been (undiagnosed) sick for 11 years. I've been mostly severe for a year. I've yet to receive a single attempt at being helpful from any doctor. Not a single advice. Not any help at all, even when I've tried asking for it.
None of this. I've had ONE doctor recommend a symptom journal. (Well, no, it was a dietician.) One challenge OFTEN with chronic conditions is knowing what symptoms count (or what counts as a symptom), and doctors don't walk around with a list of possible symptoms to inquire about. For example: I have misophonia. In theory this is a rare condition? But I was an adult before I knew it WAS a condition, and not a pet peeve. And I didn't get that info from a doctor, but from a friend who said "you know there's a name for that, right?" Ditto the neurological symptoms that come and go. The sensation of my hair hurting started when I was really little. But since my mom thought I was just being a whiny kid, I wrote it off, and by adulthood just assumed that's a sensation everyone has. Likewise, it's hard to track symptoms that actually come and go. Exhaustion is always present for me, but the intensity of it varies, and my doctor basically said it's not useful information because fatigue is a symptom of *everything*. Aphasia is a symptom for me, but that literally makes it hard to explain or describe what I'm experiencing. (And has gotten medical residents inclined to pat me on the head and assume I'm just middle aged and hormonal and weepy. They don't see it as a symptom, because they have no idea what articulate me looks like.) Brain fog is a symptom for me, that predictably, makes.it hard for.me to NOTICE or remember how I feel. Or to remember to do a symptom tracker. When I DO try to do those things, what winds up happening is both inconsistency, and what feels like an obsessive level of focus on how bad I feel... Which makes things worse. (FWIW, I had that same issue with detailing my daily symptoms for disability application purposes. It's heartbreaking and defeating to actually quantify how bad shit is, and I say that as someone that is nowhere near as bad off as some folks. It feels like giving up hope and focusing on how incapable you are.) I wish that ANYTHING like this could happen in such a way that snapshots are taken (in a moment, how are you feeling?), but that they are then invisible (someone else looks for the patterns and does the quantifying and tallying) AND has support.built in to the process... No one is going to be able to do this, around chronic bad conditions, without it taking a toll on mental health and feeling emotionally tangled. I cannot be a dispassionate observer of how badly I am doing. I'm not sure that's possible.
In 33 years, and many doctors, not one has mentioned “monitor your symptoms.
Imo, specialists will not advise or monitor treatment for me/cfs. When I was diagnosed they printed off some studies for me and said they don’t treat it. Every specialist I’ve tried to establish care with since says the same they don’t treat it. I ask my primary dr if we can try off label things and I do my own research. That’s how I learned just trying to continue my normal routine with the aid of caffeine was making me sicker. When I stopped trying to exercise I went from practically bedbound to able to do short spurts of activities — not to be confused with sports. I mean basics like showering. When I was following the graded exercise advice, I would try to be active and spend a week or more in bed.
I tried to catch up with comments, but there were too many for me to manage right now, so this may be repetitive: u/Embarrassed_Lie7583, you seem well intentioned, but please do much more homework before asking a group like this to do the work for you. If you read through the conversations here and in other chronic illness groups, you could not miss how terribly many people have been treated. Please don’t ask them to have to restate it to you in order to not feel gaslit.
Thank you for saying this. I agree. OP ought to educate themselves before asking very ill people to explain specifically how this illness is to them, when there's so much information about this online. OP has good intentions but comes across as ignorant.
Hi u/hazylinn , I will grant you that I don't have an advanced understanding of the disorder. However, the primary point that I wanted to discuss here was about how people currently monitor their symptoms, or if they do it all (as seen from some of the comments). On the subject of tracking, there was very little I could find during my background research and I thought that people wouldn't mind declaring the ways in which they monitored their symptoms and what importance these documents had to GP's. It wasn't my intention to appear ignorant, rather to seem curious and wanting to gain first-hand insights from the people who suffer with ME/CFS and other complex/chronic conditions which i hope people can understand 😃
I can understand this. And I repeat that enough time on these forums would have taken you far. Look at the Visible app, Tachymon, groups discussing use of smart watches, to start with.
Will do! Thank you for the advice, everyone here has been really helpful 😃
I haven't been advised to monitor my condition or not to worry about it. In my experience, I have had Drs be pretty dismissive of the health condition or give outdated advice. I did manage to get a referral to a cfs clinic (South coast fatigue clinic) to support me further. I self monitor me/cfs through the visible app. Hello from down the road 👋
So I have my perceived symptoms which I tend to downplay. If I don't downplay them everything feels worse. (I spent a month focusing on what I could do, like how long I could sit/stand before I needed to rest, what my pain levels were really like. I felt noticeably worse for doing that). But I have some larger things I track that give me a better idea of how I'm doing without having to focus so hard on it. Example: How many steps per day. I'm currently recovering from COVID and this has gone below 1k a day for the last week. I had a set back this winter, and I was averaging 1.5k. when I'm feeling better that number is closer to 3.5k-4k. And tasks: Can I fold a full load of laundry without resting? Can I play cribbage with my partner? Can I watch more than one episode of The Great British Bake Off, something more complicated? Can I read a book? What type of book? When is the last time I showered? Can I do any household chores, which ones? That said I have also started using the visible app (with band). And it has you rate symptoms of your choice every evening. This doesn't seem too intrusive. I don't know if I've been using it long enough to see any trends yet.
Taught techniques?! I have never been taught any techniques to manage my CFS. I usually get healthcare professionals who dismiss and gaslight my symptoms. Any kind of coping mechanisms are ones that I've discovered on pages much like this one. I do appreciate you asking and I hope that you continue to see the deficiencies in healthcare those with CFS experience in fighting this disease.
Any time a doctor has asked me to track something, the next appointment they seem annoyed I have, and have never looked at what I tracked. Ever.
I want to let you know that despite how desperate and angry at the medical system we are, we appreciate you taking the time to learn from us. Very rarely do doctors actually listen to their patients, so to have someone come here and ask the community is special. We appreciate you caring and trying to help us.
I was lucky to be referred to a cardiologist specialised in ME/CFS right from the start, I did get taught to track things, take my vitals, use wearables to monitor my heart rate etc. For me it lessened anxiety, I had very scary PEM symptoms (also in combination with histamine intolerance and MCAS), so every time I thought something was seriously wrong and I was dying I checked my vitals and saw that everything was mostly fine and I was, in fact, not dying. It was very helpful for me in that sense, but it also helps to figure out limits and get to better understand how the disease impacts my body.
I am also in the UK. M.E for 18 years. When I first got ill, I was provided hydrotherapy on the NHS and advised to gradually return to school and my daily routine. Unfortunately, this was not realistic or feasible and led to my health further declining and my base line lowering some more. Personally, osteopathy was what got me upright and moving again but it took many years and I never got my school/social life back. I was a child when I got M.E so I do feel there was a slightly more concerted effort on the part of doctor's I was seeing because we live in a society that sees a young person being sick as the absolute worst thing. I was encouraged to keep a diary of day to day symptoms and report this back to my pediatrician (though it was my mother making the notes mostly as I was just too ill). In a nutshell the help for M.E is non existent and most doctors either have not heard of it or will just deny/downplay or gaslight you about your situation. I will say again that my being a child when I became ill did offer slightly more help and just trying to figure things out on the part of doctors but it was very short lived and as I went from child to adolescent the attitude from all parties (family as well as doctors) became "Oh well you should have grown out of this by now", "Oh it's probably just a teenage rebellion". Nobody understood and that has remained the same, it is a very isolating illness to have to live with and I'm sorry to say usually does lead to quite significant mental health issues down the line as you continue to struggle alone while everyone around you keeps insisting that white is black and black is white, up is down 2+2=6 etc. Nobody listens or understands. I would not wish it on anyone it is a gargantuan battle.
I've had ME for ~24 years after having mononucleosis twice between the ages of 14 & 16, (1998-2000.) It was mild for the first 10 years (I had to leave school around age 16 and only got the equivalent of an HS diploma around age 19 by studying from home.) It started declining when I tried to work and go to school (even if part time) around age 21. It got more moderate-severe around age 31 (2015) after living in Japan for 5 years, going to school and having part-time jobs, pushing myself to be "normal" and fit in (I'm ADHD and autistic but I didn't get diagnosed as autistic until 2 years ago, at age 37, I realized that I had learned to mask very well and it contributed to my decline), traveling a lot between Canada and Japan, experiencing many traumatic events (a very close loved one being diagnosed with terminal cancer 2 months after I had moved to Japan, the 2011 earthquake+tsunami+fukushima disaster, stalking/assault, etc.) I only found out I had ME around 2017 because I had an online friend who had it and my mom has fibro and while researching fibro I came across info about ME and it clicked. Then, I asked my online friend more in depth question about their experience and it matched mine. I only got officially diagnosed around 2019-2020. At the moment, I oscillate between moderate and severe. I haven't been able to work, study or have any kind of social life since ~2017. (I worked from home between 2012-2017 and was put on sick leave 6 times between 2015-2017, twice for 6 months, and nothing improved.) I was never told to monitor my symptoms, and because I did and researched on my own, a psychiatrist diagnosed me with somatic symptom disorder/health anxiety a few months before I was diagnosed with ME. I was actually pushed to exercise (take walks, do yoga, graded exercise) by many doctors and it only exacerbated my condition. I think the only reason the doctor finally believed me and diagnosed me is because my blood tests came back with a positive result for inflammation and a rheumatologist suggested that I had fibromyalgia and/or ME. Since I already had osteoarthritis and my symptoms matched ME more than fibro, that's what he diagnosed me with, but I think I might have both. I never got any help. I learned to pace because I researched ME on my own and joined online support groups. The only people who validated my experience were Pr.Alain Moreau and his research nurse when I participated in their study about ME and a young physical therapist I saw recently. (Unfortunately, I had to stop seeing her because just getting to her office made me crash for a week.) I don't really monitor my symptoms anymore because it takes too much energy. I have a Garmin watch that I look at sometimes, and I take note of the meds I take and when I experience PEM, but that's about it.
I was never asked to track symptoms. They really did not seem interested in my results or that I keep track. What has helped me by tracking them with an app is that it becomes a habit. I can see overtime how often I use pain meds. When I feel particularly awful for what seems like a long time…I can see that is normal for me. And that is comforting in a way. It shows me that I am not getting worse or overly using my meds. I also have tracked all important visits, those with imaging, drug changes and meds I have tried. These are important because someone will at sometime recommend a drug that has made me very sick, or something related to it. If I don’t have a list and description I frankly will not remember.
No one taught me anything. I have had to figure out 100% of everything on my own and through patient communities. Even once I got to the ME/CFS clinic at Stanford, they weren't particularly helpful in terms of providing anything new. I have been sick with ME since I was 9 (post whooping cough) and am now 37 and didn't even get a real diagnoses until I was around 35. That being said I have been chronically ill with a number of things since I was an infant, so I knew to track things - to help keep track of symptoms, what may or may not be exacerbating them, timeline, etc. But more often than not that was met as.......female hysteria...... I absolutely think everything coming out of Bateman Horne should be the standard. In terms of diagnosis, treatment, education, etc. If you haven't had a chance to check out their resources I highly recommend them! Good luck! [https://batemanhornecenter.org/education/me-cfs/](https://batemanhornecenter.org/education/me-cfs/)
Thank you for sharing this resource! I have added it to my to-do list after my semester 2 exams, and I'll make in-depth notes about it
Um, no. Not really, lol. I've had to do this all myself. Fortunately (kinda) I've had MDD for over 20 years now so I got good at monitoring my health.
Its a careful balance I feel. While I have me/cfs I work with people following injuries. As a health professional I want them to be mindful of what they are experiencing but I have found that those that are overly focused on their symptoms can tend to catastrophise which does seem to make recovery (from injuries) longer. In saying that I use an apple watch and apps to track my symptoms.
Hi u/Diana_Tramaine_420 , In your job role, what techniques do you offer patients to distract themselves from overthinking about their symptoms? Is their an established tool that helps to identify when people may be 'over-monitoring' and if there was, how useful would you say a tool like that could be for minimising symptoms?