Got admitted to the hospital last week. Discharged after three days with a #PICCline and training to self-infuse at home. Currently I don't have as much fluid prescribed as I'd like but hopefully I can get that resolved soon. Doing much better in general though, despite the #CFS flare that is, predictably, hitting hard. My body is completely wrung out but my brain feels like it's finally awake again after 5 months of deep fog. #ChronicIllness #MCAS

Another weekend where I’ve done hardly anything since I need to be able to work next week. My world has become very small since Covid. #LongCovid #ChronicFatigueSyndrome #CFS #NoEnergyForFun

#fibromyalgia #CFS #chronicpain are all telling me to lay around today and take a nap, so I will. Always listen to your body. And remember that heavier housework (vacuuming, washing floors, carrying laundry, etc.) counts as exercise!

Question for those who use heart-rate alerts for #pacing: How do you personally calculate your alert level?

I ask because I see two different methods recommended. One is to take 50-60% of the typical max for your age (with some variations). The other is to set it at 15bpm above your resting heart rate.

I've been doing the former method for awhile, and experimented this morning with doing the latter. Wow, it's really hard to stay in that more restricted range! So I'm wondering which one folks here are using.

#MECFS #ME #CFS #fibromyalgia #fibro #ChronicIllness #LongCOVID

Just wondering who out there has small children or babies and also #MECFS (and/or #LongCOVID). That presents distinct challenges to #pacing. Might be nice to connect.

#ChronicallyIll #ChronicIllness #parenting #ME #CFS #ChronicFatigue #BrainFog #LongCOVID #homeschool #Homeschooling

Another thing that bothers me from a #ChronicIllness perspective is how Kindle praises you for each book read and wants to turn your reading time into some kind of incentive program reminiscent of summer library reading programs for kids.

Except it doesn't give me a free personal pizza, it just reminds me that I can't read as much or as quickly as I used to. I don't want reading to be a score I'm trying to rack up. It's one of my great pleasures in life, and I just want to enjoy it when #BrainFog and small children permit.

Another one where I disabled notifications.

#MECFS #ME #CFS #Fibro #fibromyalgia #LongCOVID #LongHauler

So far, so good with the #pacing.

Still getting the feel for some of the more difficult-to-quantify symptoms, but wearing a heart-rate monitor is helping me identify how it feels when I'm pushing a little or a lot.

Also using the Visible app, which seems useful so far. I needed a low-maintenance way to track symptoms, and I'm interested to see what trends build up with heart-rate variability.

Please feel free to share your own experiences!

#LongCOVID #MECFS #ME #CFS #fibromyalgia #fibro #PEM #PENE #PESE #LongHauler

@bennessb Hi! I'm going to introduce myself before fog kicks in and then go back through this thread and meet some new people!

Various details in my bio, but here's the gist of what brings me to #NEISVoid:

I have an autoimmune arthritis that acts like #RA but eludes diagnosis.

I've also got... something... from a case of #HipsterCOVID (that means I had COVID in February 2020 so can't technically prove it was COVID). So it's likely #LongCOVID. I have halfhearted diagnoses of #CFS and #fibromyalgia from a doctor who said she can't tell the difference between the two. I don't currently have access to better health care, but I can say that my symptoms match up closely with #MECFS.

So I'm interested in connecting with people with any of these conditions, or people who use #pacing to manage #PEM #PENE #PESE. Or basically anyone who understands what it's like to be #HighRisk and un- or under-diagnosed.

Also interested in connecting with people who are #parenting while #ChronicallyIll. I have three small children, and we #homeschool.

@ahimsa_pdx I have a diagnosis of #CFS and #fibromyalgia from a doctor who says she can't tell the difference between the two and doesn't think it matters. She agrees it was probably triggered by a bad virus I got in late February 2020 (probably COVID, but can't prove it). I can't get any better medical care, and my symptoms line up best with #ME/CFS and #LongCOVID, so that's where I'm focusing.

But there are plenty of other examples in my medical history of things that went undiagnosed for far too long, things where I managed my treatment better than the "experts."

I was talking with a friend yesterday about how, at one point, neither of us would have understood #SelfDiagnosis or developing one's own treatment plan. But that was before both of us got put through the wringer of of the #medical system.

I'll spare you the details, but none of my diagnoses came without me knowing it first and seeking out the diagnosis. I've been dismissed and invalidated, for many years, by many doctors.

I've gone without care and figured out how to reverse symptoms of one condition, and been disbelieved by physicians.

I have some semi-helpful diagnoses now for my most pressing issue, but I have medical questions and no access to the care that could answer them. So I'm on my own, yet again, managing for myself.

So now, if I hear of someone diagnosing themselves and/or treating themselves, I get it. When you can't get a #physician to help you, you either sit around and deteriorate, or you go into research mode and figure the damn thing out yourself.

#HealthCare #NEISVoid #LongCOVID #MECFS #ME #CFS #fibro #fibromyalgia #ChronicallyIll #ChronicIllness #doctor #MedMastodon

My condition isn't new, but understanding it's #COVID related is. I had #HipsterCOVID (meaning I was an early adopter, prior to the start of testing), and I've been blaming my symptoms on another condition.

I have diagnoses of #CFS and #fibro from a doctor who says she doesn't know which it is and doesn't think it matters, but she does think it was triggered by whatever that virus was that I got at the end of February 2020.

I can't access better medical care, but I'm good at research and reading. I'm learning all I can, and the pieces are coming together. So I'm daring to put myself out there as part of the #LongCOVID community, even though everything is still ill-defined and unprocessed.

*shrug* Only people who get it, get it, I guess.

#MECFS #fibromyalgia #ME #NEISVoid #ChronicallyIll #ChronicIllness

This is excellent reporting
#LongCovid #ME #PostViral
#Chronicillness #CFS

https://youtu.be/Fm8WsO_FQYk

Folks who use #pacing to manage #PEM #PENE #PESE:

What are your personal early-warning signs that you need to stop now to avoid a crash/flare?

Heart rate? Pain? Dizziness? A certain point of fatigue?

Just curious what signals everyone else has identified. I imagine there will be some variation here, but maybe sharing ideas of little signs that we notice might be broadly helpful.

#pwME #pwLC #fibro #fibromyalgia #LongCOVID #MECFS #ME #CFS #NEISVoid #ChronicallyIll #ChronicIllness

Folks with #MECFS or #fibromyalgia, would you kindly share tips, tricks, and life hacks related to #pacing?

#ME International recommends using a heart rate monitor to determine how much you can exert yourself before a crash. Anyone try that? (bonus points if you can recommend a good monitor available in the US)

I'd also just welcome any personal stories of how you manage to balance your needs for activity and rest.

Note: Doctor can't tell me whether I'm dealing with #fibro or #CFS and has semi-diagnosed me with either one or both, so until I can get a better answer, I'm looking to connect with people in both categories. Thanks.

#ChronicIllness #NEISVoid #ChronicFatigue #PEM

Anyone near #Boston #Massachusetts able to recommend a doctor who can tell the difference between #fibromyalgia and #MECFS ?

#fibro #ME #CFS #ChronicFatigue #NEISVoid #LongCOVID

@alex_nman Fatshaming gar nicht cool.

Es gibt Gründe sowohl dick zu sein die nicht daran liegen Auto zu fahren.

Ich zB habe ein Lipödem und ich kann da einfach nix dafür. Ich habe #CFS #mecfs und kann deshalb nicht mehr Rad fahren weil es in einen Crash führt. Ich habe bisher keine Führerschein aber denke drüber nach als Behindertenausgleich für ein bisschen mehr Lebensqualität und Mobilität.

Sometimes the #CFS kicks in big time and I spend hours sleeping despite wanting very much to be awake. Sigh. I absolutely needed the sleep, my body was downright angry earlier today. But I didn't *want* to be asleep this long and now my sleep schedule will be messy. Ah well. Most important thing, as always, is that I got the rest my body needed.

@Maristya Darf ich fragen welcher Arzt dazu bereit ist?

Meine Hausärztin checkt es nicht.

Habe #PostVax #CFS #mecfs #longCOIVD seit dem Booster. Charité hat nen leichten Immundefekt gefunden.

Hausärztin so "Sie sind doch noch jung und sollten mit Omikron klar kommen"

Warum ich wissen will ob ich #Paxlovid bekomme im Infektionsfall hat sie auch nicht verstanden...

Ich muss mich auf den Winter vorbereiten!

Critically-acclaimed former webcomic GUN STREET GIRL: Buffy meets Hellblazer/Constantine with a young lesbian lead character. #Supernatural #GraphicNovel #LGBT #CFS #Fibromyalgia #PitchDis

SONG TO THE SIREN: A Cobain-esque cult figure rock star died years ago under mysterious circumstances.  His girlfriend (and muse) is finally ready to tell the world about the supernatural origins of his "mental illness." #ComingOfAge #Paranormal #CFS #Fibromyalgia #PitchDis