The difficulty of describing ME/CFS symptoms and experience

[linusbert]

Oh, I forgot that I did tell people that it felt like all the blood had drained out of my head, and objectively I would be quite pale in terms of an objective sign. Turns out I was right about that – I'm now diagnosed with cerebral hypoperfusion.

do doctors tell you what the origin of the hypoperfusion is? and how to treat it?

At the start of my illness, 20 years ago, I kept saying that I felt as though I had low blood sugar. I wonder now whether this was counterproductive. It did get me some testing for blood sugar problems,

i had this too, felt like i was hypoglycemic. but blood sugar was fine. though later on like 1 year later i really got diabetes.
i have read but do not recall sources, that this hypoglycemic feeling without hypoglycemia can be due to adrenal gland issues.
but i also believe in my case i always had insulin resistence.

 

[Dysfunkion]

I will never hit certain ,milestones either especially the driving thing. I have in my late teens tried to drive but there is a disconnect between my motor system and my cognition that makes it extremely dangerous even on smaller roads. Yeah I made it a few times when I had to but because of the inconsistency and how much cognitive load it took along with how much I had to manage micro-motor movements to not drive off the side would make it dangerous daily. Even on better days in the mild zone I will always have bit of that brain pressure centered around the base of the neck and migrating sensory disturbances too that can be very subtle and disturb my sense of space. I have always had hard motor/cognitive cross over walls that can't be overcome with practice because it's a hard functional barrier. In mild if you see me just walking down the street or shopping at the store I will on the outside look ok. You will if the motor crossover symptoms get bad see me struggle to work with space and working with my hands but I'm not limiting and passing out on the floor. If I'm experiencing the extreme cognitive fatigue and really feeling like my brain has run out of battery power you won't be able to see that physically and if I talk to you then you might notice something is a bit off. I've gotten very good at masking when certain things are going on too. When thing A for example is happening I know not to try to do thing B. If I know this motor symptom is occurring before I go in the store I will have my money and what else I need in a specific place for easy access to handle with minimal movements to spare traumatizing the poor healthy person who's never seen anyone with anything like it have a problem like that.

And you know this also brings me to another point. When I am experiencing a problem and they can physically see a manifestation of it usually They'll think I'm doing it on purpose because of the disbelief. So they'll be seeing the symptoms cognitively crossing over with a functional physical manifestation usually with controlling my body in space and coordinating with my motor system and/or I can't speak perfectly with word forming and sometimes finding a bit. Sometimes if the brain batteries are really on low I'll be quite "zombified", I simply won't be able to respond much no matter how I try and that one is almost impossible for me to describe save for my brain just isn't connecting or firing signals as much as it should at all. But they'll attribute it to something being done that can be completely controlled because they can't comprehend this happening. There's no clear solution, I can do things that keep it in line but I don't specifically know why they work. "Why do you take that and that?" - "Oh it just helps me function better in this way" - "But why do you need it, what is wrong?" - "I don't entirely know but it helps in this way generally with my chronic issue tied to all these others somehow", and this just goes in circles because I can only feel my way around and there's no thing to point to, to go "Ah this is the problem". There are people bed bound who can't find anything wrong despite clearly everything going wrong and most things tried making it even worse with this.

Now when I try to describe this to the average person especially in the detail I have because all I do is navigate issues like this to survive and knowing specifically what is going on is what keeps me going I usually get looks like I just told them the sky was falling. They just can't comprehend what having a constant neurological disorder with some physical presenting symptoms and a lot of subtle one's neurologically that get worse with more exertion is like. I do not know what healthy people feel like all the time but there must be something fundamentally more functional about their systems because of what they can accomplish, how much they're able to do while only getting a bit fatigued generally without any major cognitive/motor/sensory disturbances, and how I never hear about them no matter how actually sick complain of anything like it unless they get struck with something in the post infectious bubble like long covid where there is a lot ME/CFS subtypes of symptom presentation in that "constant undetectable and migrating brain and neck pressure" bubble with often people finding some gut connection no one has ever been able to crack the code of. We just don't really know what this is besides knowing what it does to us.

 

[Viala]

Some groups are more poorly treated - and that's extremely important for public policy, research funding, and hope for systemic change.

However, for people who are individually suffering - it's really not helpful to say, "Yes, as a white woman you may be suffering, but historically and just generally, it's FAR WORSE for a trans black woman." Even though that's likely true, it doesn't make someone's individual suffering any less valid or easier to take.

True, and it is invalidating to hear "Yes, as a woman you may be suffering, but men are also suffering so stop talking about women suffering, history is irrelevant that they suffered more". These are a bit two different arguments I think. So it is invalidating both ways, yet the thing is that nobody here says that suffering of men is less important, we just state the facts that are tightly connected to ME/CFS itself and no one should feel offended by it. When someone gets offended and wants to silence talking about the facts, it suggests gender bias and that goes beyond invalidation itself.

Context is also important here. Since we got redpill propaganda it has spread like a virus all over the internet and beyond. I have been housebound for a while and I'm online a lot it helps me to keep in touch with reality, but in recent years wherever I go on popular social media in most places it is the same which is a lot of redpill guys talking badly about women and being toxic, trying to silence women when they talk about their problems. They go to women's channels and harass them even though women just talk about women stuff. People got more toxic online in general as well.

I am interested in a lot of typically male topics so I've been around guys a lot and sadly it's been difficult recently because of misogyny. It's quite easy to spot because they use the same arguments everywhere. Luckily this forum mostly has been safe for women.

But while we shouldn't invalidate people's individual experiences, we also should be aware of systemic injustices that created these problems in the first place.

Yes, that's the whole point here.

 

[Artemisia]

Yes every time women point out medical misogyny is a factor here, a male loses it.

Here's what happened in this thread:

Women were told to create a subforum where we would be banished to discuss our issues where men could ignore us. A mod was tagged in an attempt to enforce this silencing of women.

This is overt misogyny and it is disgusting. It is unacceptable and should be pushed back against.

Naming woman hatred is now more offensive than the actual woman hatred.

What next? Censor Unrest because Jen Brea mentions misogyny as a factor?

 

[Viala]

right, because this topic comes up SO MUCH here.
a couple posts pointing out medical misogyny on a forum for a female-dominated illness where medical misogyny is absolutely a factor is just unbearable

can somebody second this, if yes i will delete my account asap and create a male phoenix rising.

I second this. You shouldn't have said that, you knew I was coming
No worries, I'll be gentle.

Women are not your enemy or competition. The oppressive system is your enemy, it's the enemy of all of us. This same system who wants to keep women quiet says to men that talking about their feelings is emasculating and all that other bs. It is another divide and conquer social engineering to make everyone turn on each other. There are a lot of wonderful men who are jaw dropping masculine because they fight for women and their families and against injustice. That is something I respect deeply. Not some sex trafficking dude who says that sleeping with women is gay, who makes money off of men's misery.

 

[linusbert]

Artemisia, offtopic, wrong thread, imho wrong forum even. please create a separate thread for this kinda discussion.

 

[Viala]

Predictable.

 

[Artemisia]

we really need to stop this female getting diagnosed more psychiatric disorders and sexist narrative

The beginning of this entire discussion is right there in post #5. You told a woman to not talk about her experience and called facts a "narrative." If you don't like being called out for your misogyny, don't be misogynist.

 

[Artemisia]

There's no point dwelling on it now, I suppose. I do think it is up to doctor's to ask good questions though, and tease out information about how people are feeling.

Good point. The bad doctors will try to pull a "gotcha" if you use the wrong words. Like I told a doc I had muscle weakness but really I had problems with stamina --the weakness appears with PEM.

So the doc does muscle strength tests to prove me wrong and write about it in the chart. When a few questions about how the muscle issue manifests would've cleared it up.

 

[Rufous McKinney]

I wonder how other languages describe these feelings, and how they divide them up.

I think this is one of the huge issues with interfacing with the Medical Community. Language and terminology and actually getting AT the issue.

Example: I got bursitis of the elbows. (aka stagnation)

Talk about weird. What is this WEIRD experience? I was flummoxed. My left elbow simply hurt like heck and nothing is there. And the right elbow didn't hurt and ended up with alot of fluid in the bursa.

But I'm at the chinese herbalist and the elbows came up and I said: my elbows hurt. And he goes off on arthritis.

My terminology failed do describe what was actually happening, my fault. But the way he just "assumed" things....without asking more questions. Nothing about bursitis is arthritis.

BTW: neither elbow can tolerate being near the devices. I got the bursitis to clear out several years ago, but elbows must avoid being near devices regardless.

 

[Rufous McKinney]

The oppressive system is your enemy, it's the enemy of all of us. This same system who wants to keep women quiet says to men that talking about their feelings is emasculating and all that other bs. It is another divide and conquer social engineering to make everyone turn on each other.

I entirely agree. We are all captured in the Matrix to varying degrees.

So the doc does muscle strength tests to prove me wrong and write about it in the chart.

I'd never seen a doctors medical notes, until very recently. I could never get records out of Blue Shield, for instance, or across the parking lot from my current doctor who keeps few medical records and does nothing electronically (which I liked).

I went to the ENT and ended up agreeing to a biopsy that led to the NHL diagnosis. So he had written a remarkably long narrative about My Visit (how odd, I thought). And this included a sentence about how he "convinced me" to NOT get acupuncture to treat a possible lymphoma.

I found this entirely bizarre. He didn't convince me of anything. I brought up acupuncture in a particular context. And I would never seek acupuncture to treat lymphoma.

so this did the following: PUSHED MY BUTTONs.

I found it patronizing, condescending and insulting. And it was sort of a Simon Wesseley moment. Who am I dealing with here? Also, the medical notes I can now read, include commentary about my psychological state. I saw that in the rheumatologists notes, also.

The ENT doctor told psych jokes, and something was insulting, I recall. His Wife is a psychiatrist. I"m pretty sure I felt some defensive reaction, about those jokes and the wife.

Yes, this was disappointing, frustrating, and oh so typical. However, he was also a helpful doctor, and so despite these wrinkles, I would still go see him again if I needed to. I can be understanding that this doctor is also caught up in The Matrix.

 

[Rufous McKinney]

I will never hit certain ,milestones either especially the driving thing.

That sounds hard, to know that. It could change, or treatments may arise, so that part is encouraging.

But meanwhile, I feel for your situation.

They just can't comprehend what having a constant neurological disorder with some physical presenting symptoms and a lot of subtle one's neurologically that get worse with more exertion is like.

Maybe we just have to recognize this is almost always the case.

My best friend I've known for years, told me she knew I was a hypochondriac. That is how she has viewed my health issues for quite a long time now, it seems. We talked about it recently, and she admitted to me that she now better understood. She goes to the doctor and leaves with something fixed. We do not. This huge difference in experiences, has a huge bearing on one's reality.

How can I wish for my daughter to better understand how much this sucks? The main way is for her to experience lousy ME symptoms. She loves the feeling of My Muscles Hurt. For us, we are poisoned. For her, she's just walked three miles and these aching muscles feel healthy. It's a different world- we live in.

 

[Artemisia]

She loves the feeling of My Muscles Hurt. For us, we are poisoned. For her, she's just walked three miles and these aching muscles feel healthy. It's a different world- we live in.

Exactly this.

Everything I can say to describe the illness just does not compute to healthy people. So what, muscle pain, fatigue? Take a nap. Symptoms worse after exertion? Yeah everyone gets tired when they overwork. You can't think clearly when you're tired? Happens to everyone.

Every symptom sounds so trivial, yet is totally debilitating.

 

[linusbert]

How can I wish for my daughter to better understand how much this sucks? The main way is for her to experience lousy ME symptoms. She loves the feeling of My Muscles Hurt. For us, we are poisoned. For her, she's just walked three miles and these aching muscles feel healthy. It's a different world- we live in.

back in the day when i was still 'healthy' and going to the gym, i actually loved muscles acheing, as it signaled growth. there was a point where no sane training could exhaust the muscles anymore. i could do situps for eternity (well almost).

now with the slightest (not normal)feeling in my muscles, i know they are overexercised and i must be really cautious.
so i went over my life in that regard from "yay" to "f*ck".

How can I wish for my daughter to better understand how much this sucks?

sometimes i think that the ignorance of loved ones is actually their blessing. who am i to want it gone for them. the thought crossed my mind multiple times though, just one day of all my symptoms for them, and the next day they are healthy again. evil thoughts, shouldnt have those.


when i was in psychosomatic clinic, i was treated mainly by female doctors and psychiatrists. and they hated my girlfriend. she also was a colleague and in a higher prestige job.
everything about my disease they revolved around her. i am sick because i got a crazy girlfriend keeping me sick and i need to quit relationship so i can recover.
when i requested my file after leaving that clinic, the file was almost more about her, than about me. the clinic department chef, a guy, did read it, seamed so embarassed that he asked me multiple times if i want to have it. note that she wasnt patient, she just came for visits bringing me food, because that hospital somehow wasnt capable to reliable provide.
well in the end we did separate, didnt get healed though. so i guess that theory was not quite right...

 

[Rufous McKinney]

Every symptom sounds so trivial, yet is totally debilitating.

I was feeling pretty good last week, nice. Then, I picked up the cold, had to take chinese pills, amped up my immune system and felt remarkably awful.

The awful shocked me. It still shocks me. How can this happen? How can this be true? Surely I was fine, surely I am merely confused. Often I "still" do not "believe it".

Also, well my symptoms can change every few minutes.

 

[Rufous McKinney]

everything about my disease they revolved around her. i am sick because i got a crazy girlfriend keeping me sick and i need to quit relationship so i can recover.

thats awful!!! How very strange.

But if it was a psychosomatic clinic, then we understand how that might happen. I was sent to therapy for being a teenage delinquent (per my parents) and most of our sessions were spent discussing my crazy Boy Friend who was the one needed therapy, not me. Girlfriend is fair game, they think.

 

[Dysfunkion]

do doctors tell you what the origin of the hypoperfusion is? and how to treat it?

i had this too, felt like i was hypoglycemic. but blood sugar was fine. though later on like 1 year later i really got diabetes.
i have read but do not recall sources, that this hypoglycemic feeling without hypoglycemia can be due to adrenal gland issues.
but i also believe in my case i always had insulin resistence.

My blood sugar is also fine, I wonder if I also have the hypoperfusion, it seems to be related to bloodflow it self.

That sounds hard, to know that. It could change, or treatments may arise, so that part is encouraging.

But meanwhile, I feel for your situation.


Maybe we just have to recognize this is almost always the case.

My best friend I've known for years, told me she knew I was a hypochondriac. That is how she has viewed my health issues for quite a long time now, it seems. We talked about it recently, and she admitted to me that she now better understood. She goes to the doctor and leaves with something fixed. We do not. This huge difference in experiences, has a huge bearing on one's reality.

How can I wish for my daughter to better understand how much this sucks? The main way is for her to experience lousy ME symptoms. She loves the feeling of My Muscles Hurt. For us, we are poisoned. For her, she's just walked three miles and these aching muscles feel healthy. It's a different world- we live in.

I'm always brain storming and micro managing things but something always pops up. Like today the only bad thing that happened was I got too emotional and cried, now my head has that deep burning spicy feeling with brain fog. That is the problem on understanding, they'd need to experience something like this themselves where simply ordinary things like a walk, feeling emotions too intensely, or a cognitive exertion one hair too much causes flares that can turn into extreme regressions if you're not careful. Healthy people don't need to be careful about feeling emotions, watching TV, making an ordinary meal, ect-. We aren't doing extraordinary things to cause the extraordinary symptoms is the big thing here. It's not reasonable to avoid feeling a natural emotion. It is reasonable to avoid going on a 10 hour hike the next day if you're too tired.

Good point on the aching muscles thing, when a healthy person feels that after an exercise for example they know it's normal. They know it actually means it did its job and it'll go away a bit later. We feel an ache and often think "oh no what is my body doing now?" and the spiral begins. I wouldn't blame anyone for being health paranoid when any negative bodily sensation can mean much worse is on the way especially when there was no clear cause. For a healthy person a muscle ache can usually mean a couple clear things, for me a muscle or other ache can mean a million unclear things and all of t hem are much scarier than a muscle pull.

Like live as I type this my head is doing the "low battery" thing that translates to an overall physical fainty fatigue, I can in fact as this is happening do things and I "don't look sick" at first glance but these things will go very wrong. You'd think I ran a marathon today but all I did was rest and experience too many emotions. Then comes the big questions, "what's wrong and how do I solve it?". Logically if a healthy persons feels this way it's for a clear reason with a clear solution that is almost definitely going to work like just rest more or make something to eat. But with this? I have no idea cause the hunger is likely a false signal. The more rest thing can be a trap while the tired and wired sensation makes it impossible. Experiencing things with too many sensations turns up gravity. Taking anything else has a good 50/50 chance in cascade of ruining my life for the next few days if it was the wrong answer.

 

[Viala]

I wonder how much of the problem is lacking sufficient terminology and experience gap, and how much is the fact that people do not know this disease. If something is not talked about enough, it kind of doesn't exist and is not validated.

Only some people experience depression, but most are quite aware what does it mean and treat it seriously because it is a popular topic, almost everyone gets it even though the difference in symptoms between regular sadness of a healthy person and true depression is massive. It sounds like a matter of social awareness, people tend to follow popular opinions and be sceptical if they are not familiar with something. I feel that only when this disease will be as popular as depression, we will start to be understood properly. The smaller the group and the less media coverage, the more bias and misunderstanding and we might as well speak a different language, trying to convey how it feels to have ME/CFS. It's as if we had a hive mind and some things are registered only when specific threshold is crossed.

 

[linusbert]

thats awful!!! How very strange.

But if it was a psychosomatic clinic, then we understand how that might happen. I was sent to therapy for being a teenage delinquent (per my parents) and most of our sessions were spent discussing my crazy Boy Friend who was the one needed therapy, not me. Girlfriend is fair game, they think.

yes!
also funny how her psychiatrist told her the exact opposite. it was me the evil narcissist simulating disease so i would get her special love treatment making her sick in the result. also i never saw that doc.
so different people told her and me the exact same thing, but without knowing me or her. its like a standard suggestion now. now you say something similiar on a different continent and probably decades between our experiences.
just proof how highly unprofessional this psychiatric industry is. its like back in the day, instead of lobotomy and electro shock and cold bath therapy , they come now up with these kinda weird stuff. and this in the age of sCiEnCe.

 

[NameHere]

probably because most of nurses are female. from those i fear the unprofessional momma treatment.
from the male docs i fear the professional egomaniac treatment.

but overall, male females, both are not listening, both are narcissistic, all create a own narrative of my patient-ness. if they act it out as momma or as mr. hide, does not really matter.

You can't win. It was fascinating to read your perspective. My strategy: Rather than risk being dismissed, I don't tell anyone in the medical profession that I believe I may have CFS/ME.

I just tell them I have fatigue, brain fog, dizziness, vertigo etc. My ENT doctor has been understanding because this is his wheelhouse; he thinks these things are usually caused by a virus in the inner ear(s).

But my PCP, who is female, and who referred me to the ENT doc, is completely stumped and finds the treatment the ENT doc has me on to be completely fascinating (its just famciclovir btw, which I do not find fascinating).

I have found that doctors and nurses, regardless of gender, are usually "inside the box" thinkers who need an easy label to slap on you that checks all the boxes, and in the absence of that they just don't have time for you.

If I wanted to pursue a diagnosis of CFS/ME I would go to someone who deals in CFS/ME all day in their practice.

Regarding the article in the OP:

With no definitive blood test or biomarker, diagnosis, monitoring, and treatment often depend entirely on a patient’s ability to describe their symptoms

This is the crux of the issue. MS wasn't taken seriously until MRI revealed brain lesions. And they still do not have effective treatments for MS, because they don't really understand it. They don't know what causes it. Same with all autoimmune diseases.