#post exertional malaise

[chronicallydragons]

I love how people with chronic pain can be at extreme levels of pain and just be like “My body is ouchie”

#it’s me my body is ouchie #chronic pain #chronic illness #disabled #fibromyalgia #me/cfs #gastroparesis #disability #migraine #postural orthostatic tachycardia syndrome #chronic fatigue #chronic fatigue syndrome #post exertional malaise #pwme #pots #spoonie

[themathomhouse]

this disability pride month, stop making jokes about people in wheelchairs standing up or walking.

can I stand and walk? sure, for a short while and with pain. the consequences for trying to be out all day without a wheelchair are that I'll be in bed for the rest of the week, too tired and in too much pain to move.

but the government won't give me my own wheelchair because they have the same attitude as these jokes - I can stand up, so I don't need one. exercise is good for you, you should walk!

it keeps me trapped in the house, unable to do anything more than short stints anywhere without borrowing or hiring a wheelchair - one that causes me pain to sit in and relies on someone to push me (usually with difficulty), because they're not going to have a high-end chair for that sort of thing.

it's not a miracle that a wheelchair user can stand or walk. it's something we should aspire to see more often.

#disability #disability pride month #chronic fatigue #fibromyalgia #cfs/me #post exertional malaise #like fucking hell people we should really be long past this by now #why am I seeing these bullshit jokes on my dash in twenty fucking twenty three #i did a short walk to a cafe yesterday because I thought I was up to it #and my right leg has seized up #my ankle can barely take my weight and my hip won't move properly #also lol I almost certainly have hEDS but cannot persuade a doctor to give me a referral #in summary #stop being fucking dense #i would rather people who don't need mobility aids use them than have people struggle because they don't want to be seen as a faker #or have people think that you have to reach a certain level of severity before you need it #also if I had a wheelchair I would bring my cat with me more places but that's by the by

[pandemic-info]

Why You Should Rest If You Have COVID-19 | Time

#covid #long covid #article #time magazine #time #rest #PEM #post exertional malaise #pasc

[myalgicencephalomyelitiscfstom]

#chronic illness #spoonie #mecfs #long covid #post exertional malaise

[i-the-spoonie]

#mecfs #myalgic encephalomyelitis #disability #pots #disabilties #invisible disability #post exertional malaise #spoonie #spoonie memes

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom Do lovely, fun, productive things with your day but if you have a chronic illness and/or disability that can lead to post-exertional malaise then please don't push yourself too hard. Take breaks, pace yourself, give yourself extra rewards from me. emojis: black heart, blue heart, masked, lollipop x 5 2:01 PM · Nov 21, 2023

#star trek #doctor crusher #star trek the next generation #star trek memes #star trek tng #support #kindness #care #compassion #chronic illness #chronic pain #chronic fatigue #disability #spoonies #spoons #pem #post exertional malaise #pacing

[chronicallyuniconic]

Post Exertional Malaise (PEM) - What is it?

describes the worsening of your symptoms after minor physical and/or minor mental exertion.

can occur within 48 hours of activity, leaving you worse for days, weeks, months or even years.

What it DOES NOT describe is that the minor physical or minor mental exertion can come from*:

- sitting up or rolling over in bed

- a coughing fit

- DIY noise

- the TV being too loud

- using the bathroom

- getting too cold or too warm

- too much light in the room

- a phone call or text conversation

- a hot shower or bath

- the noise of a hairdryer, of dishes being put away, the vacuum

*this is not a complete list by any means, it's all I can manage

For me, PEM has been one of the hardest to accept, knowing that the smallest of things will make my symptoms worse.

I genuinely used to think it was something people were wrongly trying to pinpoint because we usually have no other reasons & crave reasoning, so "it can't be from doing ONLY that," right?? Wrong.

I'm already having these symptoms, but now I'm going to suffer more with the symptoms because of some hollow event like brushing my damn teeth??

It's hard to accept because these things did not affect me this way before, but now, I cannot bear them.

Being in a state of PEM is to be in a state of pure suffering. You feel like you're dying but you're not, you're waiting for it to stop.

PEM makes me extremely depressed & all I want to do is be alone. In fact I HAVE to be alone, because everything is too overstimulating & makes it last longer.

It makes me extremely irritable, when I have to strain my way through the day, forcing my head to stay up with my hands, when all I may have done is fold some washing.

Stretching and straining my eyes open like I have been awake for 3 weeks. Trying to stand up but it's like someone in front of you forcing you back down with their body weight, every single time.

I get unbelievably apathetic towards PEM, because "this is who I am now" & I DESPISE IT.

Being ill, PLUS being in a state of PEM is living torture. It's the antithesis of everything I aspired to be. It is NOT ME.

#post exertional malaise #PEM #chronic life #chronic pain #chronic illness #chronically ill #chronic fatigue #fibromyalgia #myalgic encephalomyelitis #mental health #spoonie problems #chronic migraine #out of spoons #sorry for being depressing #i'm so tired #chronic disability

[jesusonafrickinboat]

May is ME/CFS Awareness Month!

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Chronic Fatigue (CF), a symptom of many chronic illnesses, is not the same as Chronic Fatigue Syndrome (CFS). There is a push for ME/CFS to be exclusively known as Myalgic Encephalomyelitis (ME) in the future

ME/CFS is a complex, fluctuating, chronic medical condition affecting multiple body systems and symptoms can change unpredictably

Post-exertional malaise (PEM) is the hallmark of ME/CFS

More on symptoms: Symptoms of ME/CFS

ME/CFS affects an estimated 836,000 to 2.5 million Americans, the majority of those diagnosed being AFAB

An estimated 90% of people with ME/CFS are undiagnosed

About 25% of people with ME/CFS are bedbound or housebound for long periods

Most of those diagnosed never regain their pre-disease level of functioning

The root cause of ME/CFS is unknown

Possible triggers include: viral infections (such as mono, the flu, or COVID-19), bacterial infections, physical or psychological stress, and immune system changes. There may also be a genetic component

There is no cure or approved treatment for ME/CFS

However, some symptoms can be treated. For example, PEM is treated by pacing. More on treatments: Treatment of ME/CFS

ME/CFS costs the US economy about $17 to $24 billion annually in medical bills and lost incomes

The ME Association and the CDC have more in-depth articles on ME/CFS for more information

#me/cfs #me/cfs awareness month #me/cfs awareness #myalgic encephalomyelitis #chronic fatigue syndrome #millions missing #chronic illness #disability #invisible disability #neuroimmune disorder #fatigue #post exertional malaise #pem #post exertional malaise awareness #pem awareness #post viral illness #me awareness #cfs awareness #long covid #awareness month

[thecouncilofidiots]

Heheh Roomie doesn't usually take bubble baths At all ever The DAY after we o-c clean the bathroom, distressed and having a breakdown She decides to take a bubble bath We are ACTIVELY in a fun little PEM episode, and you're gonna undo all our work

#shitpost #screaming into the void #pem #post exertional malaise #chronic fatigue syndrome #me/cfs #cfs #joint pain #joint problems #chronic pain #chronic fatigue #chronic condition #chronic illness #ocpd #obsessive compulsive cleaning #obsessive compulsive behavior

[chronicallydragons]

I no longer desire to have internal organs

#chronic illness #gastroparesis #ibs #post exertional malaise #postural orthostatic tachycardia syndrome #me/cfs #fibromyalgia

[evilwriter37]

Suffering from post exertional malaise really badly today.

#personal #post exertional malaise #cfs #chronic fatigue syndrome #chronic fatigue #spoonie #chronic illness #actually chronically ill

[multifariousmayhem]

source: http://www.cfsselfhelp.org/

we made this for our room but maybe it can help some people! so here you go

#cfs #chronic fatigue syndrome #chronic fatigue #chronic pain #chronic illness #post exertional malaise #PEM #we made this to hang it in our room #since we keep pushing too far #we are still learning how to live like this #sigh #red

[alleykatart]

So, I have POTS. And one of the things some people with POTS have is exertional intolerance & post exertional malaise which means my body really does not like to push itself and will punish me if I push too hard.

Yesterday I pushed too hard by cleaning out eight drawers worth of stuff, sorting through some old clothes I never wear to give them to charity, and doing two loads of laundry, all that after making a meal.

It doesn't really sound like a lot until you consider that on a normal day 'making a meal' is about as strenuous as I can manage and even that is hard.

All that to say that today, I am in a lot of pain. My muscles feel like there's shards of glass in between each muscle fiber, they're spasming a lot more than normal, and the neuropathy jolts of lightning that are normally mostly controlled with anti-seizure meds are kicking my ass right now...

But I did a lot yesterday, and I'm proud of myself for pushing, for connecting with my body and doing something worth doing, despite the pain today. I hope the clothing I donate brings someone the confidence and joy they brought me when I bought them.

In a few days, if I'm up to it, I'll empty the remaining four drawers and we'll get this old pressboard dresser out of my room and make space for new good things to come into my life, like an actual bookshelf to put all my books and DVDs and collectables on. 💖 Slowly but surely, after 5 years living here, I'm making this space mine, instead of someone else's spare room.

#pots syndrome #chronic illness #chronic pain #post exertional malaise

[myalgicencephalomyelitiscfstom]

From The #MEAction Network

Wondering about the terms PEM or pacing? Have you seen #StopRestPace and were curious as to what it referenced? Maybe you have been in our community a long time and want to save some easy ways to explain these concepts to others. Perhaps you have seen pacing misused and want to help clear that up. We hope this post helps!

#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.

What is PEM? Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Sometimes exertion is misunderstood as exercise. Exercise is simply one form of exertion. Exertion is defined here as anything that stresses or strains the system. Exertion can be physical, orthostatic, sensory, cognitive, emotional, or environmental. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.

Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. While this sounds simple, it is incredibly difficult. Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population.

#MEAction offers three pacing guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with Long Covid families. Our clinician's guide was developed with Patient-Led Research. https://www.meaction.net/resource/pacing-and-management-guide

#pwME #MECFS #LongCovid #pacing #Post exertional malaise

[pandemic-info]

I know unsolicited medical advice is never welcome, but I feel an absolute compulsion to mention #LongCovid & post exertional malaise to everyone I see posting about how they “just don’t feel like themselves/are weirdly irritable/can’t focus/can’t sleep/energy levels tanked.”

The first place most people jump to is “I’m probably depressed & I should push myself to exercise & get out more,” which would be fine if you’re actually depressed but disastrous if you have post exertional malaise.

I’m so desperate to spare even *one* person the agony of spiraling into #MECFS that I’m fine w/ being the unsolicited advice asshole.

Also, I’d bet my soul that #LongCovid is orders of magnitude more common than most people think because of the many people I know who almost certainly have it, only a handful have been willing to make even a tenuous connection between their post infection health issues & Covid.

#covid #long covid #twitter #commentary/opinion #personal stories #pem #post exertional malaise #post viral illness #depression

[softnoodlesdoodles]

My world is slowly closing in on me

#long covid #post covid #post exertional malaise #chronic illness #doodle