janetlogan, to actuallyautistic
@janetlogan@mas.to avatar

Between going out in the cold after only 2 hours of sleep, and the stress of my worrying about the test, my #fibro is flaring big time. I'm going to go relax in bed, and try to recover. 💤

I handled the peopling fairly well. The Lyft driver over there this morning was cute, with great mom energy. Of course, she was the age of my own kids. 🤷‍♀️ But she helped me to relax a bit. 💜

#ChronicPain #AFib #spoonie #CardiacCT #stress #worry #ActuallyAutistic

@spoonies @actuallyautistic

janetlogan, to spoonies
@janetlogan@mas.to avatar

It’s been another busy day today. Went to clinic for labs. That took way longer than it should have for middle of the week between holidays. Way too peoply too. My self could have done without that.

The phlebotomist was skilled and didn’t cause overmuch pain. That, after commenting on how narrow my veins are. My could have done without that comment.

Came home in pain with back spasms coming and going. Sucks getting old.

@spoonies

janetlogan, to actuallyautistic
@janetlogan@mas.to avatar

December 12th is always an emotional day for me. It's my late wife Barbara's birthday, and the #grief wells up and spills out.

Today was absolutely just such a day. And to top it off, my roommate went off on a rant about how my depth of feeling on that topic is wrong and unhealthy. Not her words. I cleaned it up.

I had a huge meltdown as a result. Now I'm exhausted, and in pain. I'm turning in for tonight. I hope.

#ActuallyAutistic #spoonie #fibro #fibromyalgia

@actuallyautistic @spoonies

janetlogan, to spoonies
@janetlogan@mas.to avatar

Currently waiting on my cardiologist to review the CT results and suggest next steps. I'll probably be put on a statin, at a minimum. I do have some hardening of the arteries, as well as more significant hardening of the aortic valve.

All of which isn't great, but not immediately life-threatening either, so far as I can tell from the Internet. I'll update when the cardiologist gives me his take.

And my is flaring.

@spoonies

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

2/

"Conclusion: Methylomes of the blood cells of patients with #FM and #CFS in three independent studies have shown methylation changes that appear to be implicated in the pathogenesis of these syndromes"

@mecfs @fibromyalgia
#Fibromyalgia #Fibrositis #Fibro #FMS

geographile, to Discord
@geographile@sfba.social avatar

A lot of the community on Twitter seems to have dissipated since Twitter went kaplooey, but the channel is still there. It doesn't seem very active these days, but it's there, and we would love to see you if you have or a illness. Come join us, we're nice people.

https://discord.com/invite/nuh9TTsj




janetlogan, to spoonies
@janetlogan@mas.to avatar

I walked 1.7 miles (about 2.7 km) today. And I only needed about 2 hours recovery. That's really quite good, all things considered.

#fibromyalgia #fibro #AFib #spoonie

@spoonies

janetlogan, to spoonies
@janetlogan@mas.to avatar

Taking some Tylenol and lying down for a bit. Headache, lower back pain, and other various muscle pains. Ugh. ☹️

Probably largely the change in weather. It tends to trigger #fibro flares.

#spoonie #ChronicPain #fibromyalgia

@spoonies

janetlogan, to spoonies
@janetlogan@mas.to avatar

I just got around to reading, in detail, the blood work results from cardio visit. Nothing terribly surprising, except ... My eGFR was 81. I'm not going to get too excited, yet, since I am now back on low dose aspirin.

But if that holds, it means I have moved out of #CKD, and back to normal kidney health, due to dropping all NSAIDs. I guess it was worth the increase in #fibro pain if that's the case.

#spoonie #fibromyalgia

@spoonies

janetlogan,
@janetlogan@mas.to avatar

For those not following along, my eGFR was 51 in July 2022 when I was on Rx diclofenac for the #fibro. That was definitely stressing my kidneys. It was 57 this past July after one year of no NSAIDs. So slight recovery. Below 60 is the line for #CKD. So 81 is a huge improvement in 4 months. At my age, they look for 85 but I'll take the 81. 💯

#fibromyalgia #spoonie

@spoonies

janetlogan, (edited ) to spoonies
@janetlogan@mas.to avatar

Found this image today at a #fibromyalgia awareness site. It spoke to me. I've had so many people in my life who doubted my pain. 😢

#fibro #spoonie #ChronicPain

@spoonies

https://www.personalizedcause.com/blog/fibromyalgia-awareness-day/

janetlogan, to random
@janetlogan@mas.to avatar

I have such a nasty headache. Apparently, a migraine started while I was sleeping. Therefore no aura, and no opportunity to get ahead of it. I took a couple of Tylenol around 06:30 ET. Guess it's time for a couple of more.

#spoonie #migraine #headache

janetlogan,
@janetlogan@mas.to avatar

It seems as though the #migraine was a precursor event for a full blown #fibromyalgia flare. My back feels like I've done a day in the watermelon field picking melons.

And yes, I know what that feels like. One summer, my father bought the entire crop of a field for that season, and my brother and cousins and I helped pick those melons every weekend.

He'd sell them out of the back of his truck on the roadside during the week.

#fibro #ChronicPain #spoonie

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
janetlogan, to random
@janetlogan@mas.to avatar

I'm lying in bed, wide awake, again. Woke up about 1am. It's coming up on 2:45am. Just took a couple of Tylenol, and applied some Diclofenac gel. Tonight's pain is mostly in my neck and shoulders. A bit in the lower back too.

It's nothing new or unusual, but I'm really tired (pun intended) of waking up in pain in the middle of the night.

janetlogan,
@janetlogan@mas.to avatar

We've got a cool front coming in. Low tonight mid 50s F. Tomorrow night will be in the mid 40s. High yesterday was 80. High Saturday will be upper 60s.

Weather changes pretty much guarantee I'll be experiencing increased pain levels.

MsHearthWitch, to animals
@MsHearthWitch@wandering.shop avatar

Hanging out with the old boys tonight.

Taking a moment to just sit, and do nothing else, is really hard. I want to read, or knit, or crochet, or play a game.

But sometimes we just need to be still. After days and days of pain, I'm trying to find my way back to my body.

#DogsOfMastodon #CockerSpaniel #ChocolateLab #Today #ChronicPain #Fibro

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New pre-print from Spain:

HERV activation segregates ME/CFS from #fibromyalgia and defines a novel
nosological entity for patients fulfilling both clinical criteria

Free fulltext:
https://www.biorxiv.org/content/10.1101/2023.10.05.561025v1

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Fibro #FMS #FM @fibromyalgia @mecfs

tomkindlon, to fibromyalgia
@tomkindlon@disabled.social avatar
effies, to disability
@effies@wandering.shop avatar

Hey disabled/chronically ill peeps:

Wanna confirm your worst fears? Here's a reddit thread of residents showing unbelievable contempt for patients w certain diagnoses: https://reddit.com/r/Residency/s/AbReVlD4FO

Hey allies:

This is what your loved ones have to deal with. Go w them to doc appts to help advocate!

MsHearthWitch, to random
@MsHearthWitch@wandering.shop avatar

I thought I was over this pain flare, and that yesterday's icky feels were just a pain-hangover. But today I woke up in monster pain again. So, you know, that's super fun.

#ChronicPain #Fibro #NEISvoid

MsHearthWitch, to random
@MsHearthWitch@wandering.shop avatar

It's always fun to wake up in screaming pain. Right? That's how we want to start the week FOR SURE.

Weakly X-ing out my to-do list for today. Maybe tomorrow.

MsHearthWitch,
@MsHearthWitch@wandering.shop avatar

Do any of my fellow chronic pain folks find that a pain flare makes you feel so warm?

It's a thing I've been noticing for a few years and I am curious if other folks are the same?

Pretty sure it's because my pain flares are an inflammation issue at their core.

#Fibro #ChronicPain

MsHearthWitch,
@MsHearthWitch@wandering.shop avatar

The pain has moved from "Oh fuck I need to hurl" levels to "As long as we don't move too much, it's okay"

Which, is better than I expected. Managed to keep down a hearty veg soup for lunch. And if things stay this level, I'll probably attempt the baking of muffins in a bit. I really want orange chocolate chip muffins...

I had great plans for cleaning my bedroom today but that is absolutely not gonna happen. Did manage to get the towels in for a bleach tho

#ToDo #ChronicPain #FibroLife #Fibro

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

StudyME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/ #CFS, #FM & #LongCOVID Research

https://www.healthrising.org/blog/2023/09/23/study-me-open-medicine-foundation/

"I know of at least two #MECFS studies that failed to get completed because they failed to find enough participants. That’s a horrible thing to have happen in a field that needs every research dollar it can get its hands on."

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME @longcovid
#PwLC #postcovid @fibromyalgia
#Fibromyalgia #Fibro #FMS

steamedcarrot, (edited ) to books
@steamedcarrot@mastodon.social avatar

Collector of #books + fat cells + #truecrime podcasts + creative curse words. Feisty, fierce, #feminist, #liberal AF, 🏳️‍🌈 ally, #BLM. I’m #GenX, a small biz owner, former web dev, stationery + sticker creator on Etsy, old school #penpal,#StephenKing’s #1 fan, #bookworm, #ambivert, #fibro warrior, and incredibly lucky wife and mom of three amazing boys. I love #walking, taking amateur #nature, #wildlife and pet photos with my phone, posting about #KansasCity, #bloomscrolling, and #birdwatching.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Full text just released for this from Spain:

Increased gut permeability & bacterial translocation are associated with #fibromyalgia and #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome: implications for disease-related biomarker discovery

https://www.frontiersin.org/articles/10.3389/fimmu.2023.1253121/full

@mecfs
#MEcfs #CFS #PwME #MyalgicE @fibromyalgia #Fibrositis #Fibro #FMS #FM

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