Can a stroke cause me/cfs?

[Gijs]

I don't think exactly identifying a specific cause disqualifies it from being ME/CFS.

''exactly identifying a specific cause disqualifies it from being ME/CFS''

This is a contradictio in terminis.

If the exact cause for your complaints is objectively demonstrable and causal, it does not meet the definition of ME. ME is a multisystem disease of which the cause is unknown and for which there are no objective tests to demonstrate the disease and symptoms. What you mean are secundary diseases such as infections in the mouth for example. They can be treated or not. Also many ME patiënts don't have pain. Patiënts with FM have pain.

 

[Azayliah]

A stroke could be the snowflake that causes the ME/CFS avalanche. If a weakened immune system is the only requirement for ME/CFS to take hold, there is evidence that a stroke can do that. Alternately, maybe a stroke--particularly if caused by POTS--merely worsens existing, unnoticed ME/CFS.

Having said that...

Today I woke to severe flu-like symptoms: brain fog, weakness, sore throat, aches, chills, nausea, dizziness, congestion, I-can't-talk levels of fatigue. It felt just like the first day of one of my worst PEM flares. I tried DayQuill, which mainly helped the sore throat, and Ibuprofen, which took down some of the aches. But with the fatigue there and the brain fog getting worse, it was looking more and more like PEM.

I took Ubrelvy, and an hour later the remaining symptoms, including the debilitating fatigue, cleared up. I've had ME/CFS for 20 years, and yet right up until the medicine worked I could did not know it was a migraine rather than PEM, flu, etc. So, when someone with another fatigue-causing condition claims to have ME/CFS, I hold on to my doubts.

 

[pamojja]

If you have demonstrable underlying damage or diseases that can explain complaints, then by definition you do not have ME/CFS.

When chronic fatigue of chronic diseases is confused as exactly the same as post-exertional malaise, then yes. By such an imprecise definition. Which, for all practical purposes of a patient trying to regain health isn't meaningful. Since chronic fatigue in CD (chronic disease) could never be alleviated with what works most likely against PEMs: pacing only.

Here is a study about the prevalence of chronic fatigue in chronic diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8546086/

Note: ME/CFS isn't even included, since chronic fatigue isn't a sole hallmark of ME/CFS. Even in those chronic diseases known for chronic fatigue, it is prevalent at about 35% of patients only. PEM is nowhere mentioned in this study of the prevalence of chronic fatigue in CD.

On the other hand, ME/CFS diagnosis does require PEMs, cognitive issues and pains, all 3 symptoms, as the defining symptoms of ME/CFS only.

Here the wikipedia definition of PEM: https://en.wikipedia.org/wiki/Post-exertional_malaise

I'm one example of the 65% majority with 5 predisposing chronic diseases (NAFDL, CHD, Stroke, Hypothyrodism, T2D), who experienced fatigue after exceeding my energy envelope through post-exertional malaise only. Which is not part and parcel of chronic fatigue in CD.

I.E. HIV can also give ME/CFS symptoms.

Which ME/CFS symptoms? Remember, the 3 are needed for a ME/CFS diagnosis. Does proper pacing decrease PEMs in HIV?

 

[pamojja]

So, when someone with another fatigue-causing condition claims to have ME/CFS, I hold on to my doubts.

Oh boy, with so many chronic diseases as in my case in remission, but none than proper pacing bringing my PEMs into remission years later, I'm certain one can have all diseases or none, and ME/CFS with PEMs at the same time.

There is no known unique cause to ME/CFS. How does that ignorance makes it so unique, with no second disease beside possible?

and yet right up until the medicine worked I could honestly not have told you that it was a migraine and not PEM, flu, etc

Why on earth could someone with ME/CFS not also suffer migraine of flu, etc. at the same time? With my experience of so many chronic conditions beside, I'm always on the watch-out for the next, to force into remission again.

 

[Artemisia]

Side question

How do you explain PEM to someone who does not have PEM?

I usually say something like, physical or mental exertion makes my symptoms increase to the point of severe, debilitating exhaustion and body aches. Sometimes but not always I also get flu like symptoms.

But that just sounds pretty much like what normal people have, which is they do a lot and then they're tired or exhausted. "Yeah I did too much this weekend and didn't get enough sleep so I'm exhausted today!"

Especially for people who do have some kind of illness that causes fatigue, yet they don't have PEM. A lot of people with less debilitating illnesses have an increase of symptoms after they do a lot. So people without ME start thinking that they have the same thing we do, plus their other symptoms. Thus ME isn't all that bad. Yet their functioning is obviously much better than mine.

Can anyone explain how you put into words the difference between PEM and normies just feeling tired after they do a lot?

 

[Artemisia]

Also, the thing about not having any other conditions ...

Well I was diagnosed with CFS by an infectious disease doctor. He also referred me to a sleep specialist and I did some sleep studies. By the time I returned to the infectious disease doctor for a follow-up appointment, I had already done the sleep study and they found moderate sleep apnea so I started on a CPAP machine.

So in his doctor's notes, the doctor who initially diagnosed me with CFS basically retracted his diagnosis because he said CFS is a diagnosis of exclusion and because I have sleep apnea, I therefore don't have cfs.

This guy also insisted I take 50 mg of naltrexone in that first visit and was personally insulted when I politely explained that CFS patients are supposed to take around 4.5 mg, ie LOW DOSE. So not the most ME literate physician.

And now I have on my medical records that actually my only problem is is sleep apnea. Yeah, thanks doctor. Meanwhile the CPAP did not do a damn thing for my ME/CFS symptoms.

 

[pamojja]

When young and healthy i worked as construction carpenter, up to 12 hours a day. Terrible fatigue afterwarts. But not the next morning, except slight muscle pain.

With PEM Im fatigued, in pain and cognitively impaired, as many days afterwards. As until Im able to just lay in bed only, for at least a whole day or two.

Since remission of PEM, a good night sleep is enough for me again, to be upwithout fatigue, pain or impaiments the next day.

 

[Artemisia]

cognitively impaired

Somehow I always forget to mention this one, probably because this is becoming a worse symptom for me.

 

[Rufous McKinney]

Can anyone explain how you put into words the difference between PEM and normies just feeling tired after they do a lot?

My daughter often serves up the "empathy" response....about being real tired after doing alot or hurting all over from "doing things" like go on a big hike. As if what she experiences is similar to what I experience.

But then she sees me go into some acute state of really bad PEM and even she is shocked at how horrible it is.

I just had intense PEM from appointment with the hematologist. It was emotional and mental PEM. A coma started about twenty minutes into the appointment. I'm listening to my daughter and the doctor, in Spanish. I'm paying some attention without trying to REALLY pay attention. I am dealing with low grade lymphoma and so this doctor told me more or less the exact opposite of everything the UCLA doctor told me.

I was entirely perplexed, flummoxed, angry and also scared. My logical daughter witnessed this and frankly she was stunned. (how can two doctors be 180 degrees apart?)

The Coma returned after I got home. digestion tanked the next day. I could not wake up. Just the toilet and. bed and the toilet and bed. I could hardly walk to the kitchen and could hardly stand and could hardly lift my arm. My feet were acutely numb and the electric tinnitus brain thing took over.

I felt absolutely horrible. Poisoned. And had to make my husband breakfast as his nurse we pay, just stood around.

And I am who needs the nurse.

 

[Artemisia]

That sounds awful, Rufous. Yeah it's usually people who are very close to us / live with us who only ever see what bad PEM is like for us.

But why didn't the nurse make the breakfast?

 

[Rufous McKinney]

But why didn't the nurse make the breakfast?

We have several nurses, all males, who rotate on 12 hours shifts.

One of them just does not do "the kitchen". He's helpless there. Or doesn't view his nurse job as including these other (related) domestic chores. It does include watching soccer games on his cell phone while my husband naps.

I love the other two, they are very helpful. And can produce edible eggs and toast.

All speaking Spanish, and I studied Spanish for many years. And can't speak Spanish. It's like my brain is now too ME- compromised.

And I should try harder. Much harder. Spanish for Dummies is in the bathroom and I didn't get past chapter 1.

.

 

[Rufous McKinney]

live with us who only ever see what bad PEM is like for us.

I am much better today, thank goodness. Far less poisoned. Therefore far less tired and the neurological issues are much calmer.

We say we are "tired"...cause it's one word and easy to say. But really we are poisoned.

 

[Wayne]

If the exact cause for your complaints is objectively demonstrable and causal, it does not meet the definition of ME.

I don't know... I just keep in mind that the people who created the definition of ME are of similar mind as those who created the definition of CFS to begin with. In both cases it seemed like an attempt to delegitimize the existence or seriousness of a disease.

In the case of CFS, it seems pretty clear they used a trivial term because what they really believed was that it was just depression. In the case of ME, it seems they tried to further delegitimize it by saying if you can somehow identify the cause(s) for the symptoms of ME, then you don't really have ME.

Huh? Talk about a contradiction in thinking, I don't know about anybody else, but that makes no sense to me. That would essentially mean nobody has ME, because once you identify the causes of ME symptoms, then you don't really have it and never had it.

I don't trust these guys, no matter what kind of authority is given to them to name and define an illness and lay out parameters about how it should be viewed based on their own biased viewpoint. Mainstream medicine has been biased against us from the very beginning, and is only now beginning to take our situation more seriously because of long COVID.

 

[Artemisia]

I don't trust these guys, no matter what kind of authority is given to them to name and define an illness and lay out parameters about how it should be viewed based on their own biased viewpoint. Mainstream medicine has been biased against us from the very beginning, and is only now beginning to take our situation more seriously because of long COVID.

+1

 

[Artemisia]

All speaking Spanish, and I studied Spanish for many years. And can't speak Spanish. It's like my brain is now too ME- compromised.

Relate. My decline in Spanish skills after many years of very hard work on them is... one of many things too painful to think much about.

 

[Rufous McKinney]

My decline in Spanish skills after many years of very hard work on them is... one of many things too painful to think much about.

Maybe its good, my daughter has to talk to them, and the doctors here seem to have alot to say.

she tends to only tell me a few things that were said. So I can avoid all the remarks they make indicating they don't know a thing about this. Surprise surprise.

 

[pamojja]

So in his doctor's notes, the doctor who initially diagnosed me with CFS basically retracted his diagnosis because he said CFS is a diagnosis of exclusion

Actually, with so ignorant MDs, it's really difficult to ever get a ME/CFS diagnosis, or not having it cancelled by further MDs of differing opinion. I still don't have a credible from a real expert.

What helped me to get at least some sort of such, was the evaluating MD of my bodily disabilities by our social ministry. They view it pragmatically: How much disabled in daily living is a patient from symptoms of which disease, at what percentage?

When I reported remission from my 60% walking-disability from PAD, my disability was immediately cancelled. Past MDs diagnoses simply don't count there anymore, with remissions in symptoms. Even though with laboratory findings only, those diagnoses are still valid.

I appealed the cancellation of my disability, since I still was unable to work above 4 hours (mentally or physically), needed 10 hours of sleep, otherwise constant PEMs were the certain consequence. Therefore, totally unable to work in any full-time job.

That's where I got a 50% bodily disability certified again. Due to no other 'active' chronic disease, from ME/CFS this time. Though in comparison still only a 'mild' one.

However, this social ministry certification in my country would only be the start for a legal fight for real disability benefits, where I certainly would need further examinations to succeed. It only grants additional protection from lay-off, a justification to get some minor financial aid for housing (with part-time job otherwise not possible) and a fare reduction in public transportation with disabilities above 70% onward.

Since I only wanted to succeed with remissions for being able to choose my occupation and live independently, real disability benefits were never my aim. What a plight in cases where really needed?