Is PEM exclusive to ME?

ChookityPop

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I thought that was the case but I talked to someone claiming the opposite and shared this with me

Fatigue similar to PEM also occurs in Sjögren’s syndrome (SS), primary biliary cholangitis (also named primary biliary cirrhosis) (PBC), and systemic lupus erythematosus (SLE).https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818468/

What are your thoughts/perspectives on this?
 
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Fatigue similar to PEM also occurs in Sjögren’s syndrome (SS)
I have Sjorgrens...also. Or on top of the ME. Undiagnosed (the dentist diagnosed it, which probably won't count.)

and its a huge eye and throat and tongue issue in my case, and hooks into the brain. Whatever are these eye troubles, the brain is right there in partnership.
 
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I have Sjorgrens...also. Or on top of the ME. Undiagnosed (the dentist diagnosed it, which probably won't count.)
I know we can apply differing names to different things, but I view this as just a suite of ME symptoms. The whole body is dry, Sahara desert. I don't think separating it off as if its stands alone, is appropriate at least in my case....
 

ChookityPop

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I have Sjorgrens...also. Or on top of the ME. Undiagnosed (the dentist diagnosed it, which probably won't count.)

and its a huge eye and throat and tongue issue in my case, and hooks into the brain. Whatever are these eye troubles, the brain is right there in partnership.
How did the dentist diagnose it?

Also what eye issues do you have? I also have terrible eye issues thats very connected to my brain as well. If I keep using my eyes way over max limit (max limit varies quite a lot) I can and up with PEM where I get super tired and has fallen asleep in the past. The eye brain connection thing I have going on is hard to put into words. My eyes loves looking around outside when its light outside and preferably looking far away. I also have dryness issues in my eyes. Will do a lip biopsy soon to rule out sjogrens.
 
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How did the dentist diagnose it?
I described my symptoms. I said I was undiagnosed Sjogrens. He said:" Your Diagnosed...."

Will do a lip biopsy soon to rule out sjogrens.
doubtful I'd agree. Example of doctor things I won' t do. Most of their tests I won' t be undertaking, even if it was feasible.

Also what eye issues do you have?
I 've tried twice and the have not been able to get an eye doctor to address any of it. They seem to just collect a check and lead me to the door. My husband brought with for moral support on the second time..he noticed I wasn't given any meaningful tests but did my husband say anything? No of course not? He was a worthless patient advocate.
 
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Also what eye issues do you have?
burning throbbing aching for many years, they actually poured, now they pour less often. They rarely dry out entirely. So then I have pretty intense brain fog, neurological issues...all tied together. Everything also is swelling up alot, Quercetin helping with some of that.

Long ago, I was unable to drive at night due to puddles. Now Im not driving, much period.
 

RyeRyeBread

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Fatigue similar to PEM also occurs in Sjögren’s syndrome (SS), primary biliary cholangitis (also named primary biliary cirrhosis) (PBC), and systemic lupus erythematosus (SLE).https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818468/

What are your thoughts/perspectives on this?
I don't believe they are similar at all. PEM is more than just fatigue. So yes, fatigue in ME, Sjögren’s, and Lupus may be similar - but PEM is not just fatigue. PEM in ME is not comparable to fatigue in other conditions. But fatigue in ME most certainly can be.
 

RyeRyeBread

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My wife suffers from SLE and possibly Sjogren, and i can confirm she also gets PEM (not just fatigue) after overexertion.
is it delayed though?
Many people with many conditions have symptoms after exertion. PEM is a delayed repsonse, usually resulting in a worsening of symptoms and of symptom baseline, as well as the appearance of new symptoms after exertion.
Also, PEM usually occurs after "minimal" exertion - things that wouldn't typical cause symptoms in a healthy person (like a shower, eating a meal, shopping, etc.). By "overexertion" do you mean she did too much or do you mean she did a significant amount of exertion?

If she is truly experiencing something like PEM,
she may want to look into ME herself
 

Pearshaped

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They write PEM is a form of fatigueability…..So looks like the authors didnt get what PEM means or looks like.

A Dr told me once PEM is known from various liver diseases, but I doubt that bec IF it was known from there,
it wouldnt be so hard for Drs to understand that exercise or slightest activity can make us much worse.
HepC and B are common.
Lupus as well.
When we tell Drs about the crashes we experience after exertion and it was a known phenomenon, it would ring a bell.

Since they really dont get that, its hard to belive that the phenomenon is already known, understood or seen in other dieseases.
 

RyeRyeBread

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@Jyoti @Pearshaped
Yes, sounds about right. I've been extremely fatigued from day 1, haven't had a moment where I've felt well rested, every single day I am fatigued --- but it's nothing like my PEM and is completely separate from my daily, ongoing fatigue. Of course they like to intertwine and work together sometimes, but differentiating between the two is fairly easy. Doctors and researchers really need to catch up on that LoL
 

lenora

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I'm a lot older than most of you and have been diagnosed with some pretty serious matters. I firmly believe that one autoimmune disease can lead to another.

Perhaps on their own they would lead to PEM, who knows? But in my mind, what difference does it make? If you have other serious illnesses that follow, you can't even begin to separate one from the other. All exist and have to be treated in their own way.

Not every doctor is capable of making diagnoses, that's why it takes an average of many years before we find an answer to our problems. Keep looking, take a break (as I know it gets tiresome) and then start again. In order to be properly treated, whether naturally or with meds, we need that proper diagnosis. If not, we could be harming ourselves.

Lupus is one of autoimmune diseases that killed people in my nursing days. Today, thanks to modern medicines, a lot of these people are not only living but living normal lives. Things do move along, but it does take time.

@heapsreal posted a video of an interview given by Venus Williams. Do watch it as it contains not just info about her specific diagnosis, Sjogren's Syndrome, but acknowledges that other autoimmune illnesses can occur. She's quite right....and the older you are, the more that's true. Not in everyone, of course, so please bear that in mind. It takes a lot of trial and error until we find out the answer for one of our symptoms let alone those who have a number of autoimmune illnesses. I do wish better health for all of you. Yours, Lenora.
 

Booble

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For me I feel a little bit like a fraud being here because I think my ME/CFS is really a combo of:

POTS
MCAS
SJOGRENS


Thanks to everyone here I learned about those three things. I was post viral and extremely fatigued when I joined here to investigate.

Along with those three I have:
non-allergic vasomotor rhinitis
a hyper alert/overactive adrenal system
and allergies if they aren't included in MCAS

(Plus I had severe endometriosis if that is relevant.)

Is that "actual" ME/CFS? Who knows.

I get 2-day later PEM, but it is heavy fatigue not pain so maybe it doesn't count as PEM?
 
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POTS
MCAS
SJOGRENS
Me too: some weird version of POTS, MCAS, SJogrens.....alot of folks share this cluster, with EDS type issues also..and I've got some kind of connective tissue problem, induced by 55 years at least of the virus, I must assume.

but it is heavy fatigue not pain so maybe it doesn't count as PEM?
the pain aspects of PEM really vary....I can't even explain my own very well. I don' t have much joint pain, lucky me. But I'm constantly in some kind of low grade dull aching heavy stagnant pain. Just enough to make you not want to do anything.
 

Booble

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Me too: some weird version of POTS, MCAS, SJogrens.....alot of folks share this cluster, with EDS type issues also..and I've got some kind of connective tissue problem, induced by 55 years at least of the virus, I must assume.



the pain aspects of PEM really vary....I can't even explain my own very well. I don' t have much joint pain, lucky me. But I'm constantly in some kind of low grade dull aching heavy stagnant pain. Just enough to make you not want to do anything.
One wonders if it all can be lumped into "Overactive System"
 

lenora

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Hello Everyone @Booble, of course you belong with us with the problems you have. One diagnosis of something may beget another as we become older and our bodies change.

PEM, I believe isn't just confirmed to us alone.....many chronic illness groups complain about the same thing. We go through periods where it seems to be worse than others, some people are totally fatigued each and every day, some with exercise only.....we're just all so different.

As I age, I also find that allergies are an added pain to it all. These are all leads for researchers, as clearly something is happening.

Overactive System: Yes, that was one of the things being studied insofar as viruses attacking different part sof the body. There are so many avenues that researchers are looking at now....and I'm grateful. Yours, Lenora.