I’m about ready to accept the diagnosis of ME/CFS. I wanted more personalised tests and opportunities to figure out what’s *really* happening in my body. But the deeper my scientific studies go, the more I understand that medical systems are made for the easy and obvious diagnoses rather than complex cases like ME/CFS is.

#mecfs #neisvoid

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#SensoryProductReview

👍🏻 TheraSpecs (specialty tinted glasses)

https://www.theraspecs.com

USE: Light sensitivity aid

REVIEW: I have to wear these glasses all day for them to be effective for me, but they've restored my ability to drive at night, as long as it's not a highly sensitive day already and I'm not cognitively too tired. I still remove them at night in situations with poor visibility (ex: weather) for safety. They are comfortable to wear and reasonably sturdy. Recommended.

#ActuallyAutistic #pwME #NEISvoid #POTS

@mecfs

NOTE: This review is shared from the perspective of *my* personal experience and is not an advertisement for the product. It is intended to serve as anecdotal data to support others with sensory issues.

Alright, time to revisit the intro message!
I'm located near Portland, OR in the PDX. I'm an infosec technical editor/writer by day, and a massive plant nerd by night.

I've been collecting aroids off and on since the early 00s. I'm beyond stoked that they're becoming so easily accessible today (even if they're still weirdly overpriced in some instances).

Outdoors, my spouse and I are growing a food forest and specializing in foods/plants native to our area. We're slowly turning an acre into a lovely orchard/salad bar.

We've got chickens/goats/sheep plus 3 cats and 3 tortoises. All this is to say we're creating our own little neurospicy disneyland/happiest place on earth.

Still very much taking Covid seriously, even though that's becoming a hella lonely proposition. We're both high risk and not keen on getting any more health issues than we've already got.
#NEISVoid #CovidIsNotOver #HousePlants #Aroids #MECFS #MCAS #POTS

Why do the sickest people have to work the hardest to get medical treatment?

Yeah, I live in the #USA. Tell me again how great our "healthcare" system is.

#LongCOVID #MECFS #NEISVoid

Good morning #NEISVoid.

I have a new physical therapist.

She had never heard of #MCAS and #EDS.

So she researched and found a great article to read. She shared it with me to see what I thought.

I am now sharing it with you.

https://academic.oup.com/ptj/article/99/9/1189/5510431?searchresult=1

I wish more doctors would read it!

It isn't perfect. I would disagree with the "Anxiety and panic disorder" under Cognitive issues. I would call that a misdiagnosis by doctors who do not recognize an actual need for the concern of the patient. Legitimate reasons for caution.

Other than that, lots of good information.

I used to be smart.
Then I got a mild case of #Covid.
#BrainFog sucks.
#WearAMask

#NEISVoid

I feel like a creature forced to hibernate by the weather, except I'm a human and humans don't hibernate by sleeping 12+ hours a day. But here I am! I know there are reasons for this, and my body is trying to conserve energy. It just makes it really hard to enjoy my days, when I'm struggling to stay conscious for more than 10 or so hours. At least when I sleep I'm not in as much pain.

#ChronicIllness #spoonie #NEISVoid

Apparently, the hip pain I have had for 20 years is trochanteric bursitis.

It has occasionally improved some.

It has never fully gotten better.

A few months ago, I was unable to stand, or walk at all without crying in pain, so bought a power chair to help me.

Saturday was a better day, thankfully.

By last night, the pain was bad again.

Tens unit helps a little for maybe an hour.

Heat relieves the pain while on.

I have done physical therapy for years. And it really doesn't help much. In fact, recently, the stretches seemed to aggravate it. So, I adjusted which ones I was doing for a few weeks.

Chiropractor helped for over a decade. He kept calling it bursitis. It didn't make sense. And he thought it would go away.

It never did.

As long as I don't stand, or put any weight on the right leg, it doesn't cause mind numbing pain. So no walking. I miss hiking!

So much, I wrote a short story about wanting to hike again without pain.

#NEISVoid
#EDS

#ChronicIllness

Ugghhh hips and back and legs hurt so I can't sleep. I've tried most of the things that would help. Considering just saying fuck it and staying up for several more hours. Grrr. #NEISVoid

Horrific #MECFS flare. Just lifting and moving my limbs is so hard. I'm in so much pain. This is what I get for leaving the house I guess. #NEISVoid

This bitter northern blast is so damaging.

I have so many layers on, that every time I move my legs - something dislocates - hip, knee, ankle, whatever. Thanks to #EDS. At least I am warm.

Though, my pain levels are as high as they can be and me sitting up at all. I am just about in tears. Even sitting still, it feels like knives are twisting in my hip.

#NEISVoid

Hopefully, a little after 2, I can take one layer off my legs and hide under a blanket.

I can' use heat since I did try a SalonPas patch.

Which I have had allergic reactions to the glue in the past.

I did check my skin before I put it on.

@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.

Ah we've reached wanting to chew through the walls stage of the #MCAS flare aftermath! My favorite (not). Feeling so restless and tired at the same time is the worst ugh.

#ChronicIllness #NEISVoid

Yesterday I said my ongoing rolling health crisis might be resolving; today I spent 3 hours in the ER and I still feel like shit. I remember first learning about #MCAS and being glad I didn't experience *that* chronic illness... surprise! I'm so tired. Nothing to do but keep dealing with this shit but I really just want to curl up in a burrow in the ground and sleep. Need some hibernation time.

#ChronicIllness #NEISVoid

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

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

So I haven't had much appetite lately (thanks to #ChronicIllness), and I suspect I've lost a couple pounds because of that.

Last night I was actually hungry. And you know what happened? Instead of just thinking, "I'm hungry; I'll eat a little something," I thought: "Well, if I can skip snacking then maybe I'll keep losing weight, and then maybe a doctor will take me seriously."

You see, I'm #ChronicallyIll, but I rarely get taken seriously by doctors. I'll tell them about pain and fatigue and so on, but then later their notes won't have anything about that, but they'll have information about how I need a referral to a weight-loss clinic or how my obesity is a problem (nevermind my great blood pressure, cholesterol, etc).

They don't want to hear what I have to say. They don't want to hear that I control my undiagnosed joint pain with a #vegan diet and that I probably know more about nutrition than they do. All they see is the size and shape of my body. So they tell me to eat less and exercise more and completely disregard anything I tell them about my actual life.

I'm pleased to say that I went ahead and listened to my body and had a little snack last night when I was hungry. But I hate that my desperation to get help from fatphobic doctors gave me that moment's hesitation. I shouldn't have to "look right" in order for a doctor to consider that I might have a medical condition that isn't caused by weight.

That their prejudice could actually cause me to IGNORE my body's needs is shameful, and the shame isn't mine.

#fatphobia #NEISVoid #weight #doctors #medicine #medical

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