ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Next up in the "Sunday Conversations" series from the Massachusetts ME/CFS & FM Association:

“Dysautonomias 101: More Than Just POTS”

Sunday, March 17
4 PM Eastern Time

Speaker: Peter Cariani
Moderator: Hayla Sluss

https://www.massmecfs.org/news-events/66-sunday-conversations/881-sunday-conversations-mar2024

Register here:

https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=177

@mecfs @pots

janetlogan, to actuallyautistic
@janetlogan@mas.to avatar

#BrainFog is really acting up today. #Fibro pain is much higher than normal too. Thanks to the brain fog, I totally spaced on a group #therapy session earlier.

#ChronicPain #fibromyalgia #spoonie #ActuallyAutistic

@spoonies @actuallyautistic

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

OMF's Research Registry Seeking More Participants

Links in image:
https://www.omf.ngo/
https://www.massmecfs.org/index.php?option=com_civicrm&task=civicrm/mailing/url&u=8165&qid=661843

From the Massachusetts ME/CFS & FM Association e-newsletter

#MEcfs #CFS #PwME #LongCovid #Fibromyalgia
@mecfs @longcovid @fibromyalgia

tomkindlon, to fibromyalgia
@tomkindlon@disabled.social avatar

Press release:

"A blood test will diagnose #fibromyalgia more reliably: A pioneering technique that a URV researcher has helped to develop enables this chronic disease to be identified more quickly and precisely"

https://www.eurekalert.org/news-releases/1036432

#Fibro #FMS #FM @fibromyalgia

1/

scrappedbadnik, to transmasc

I'm Nate, a 28yo 🇧🇷 transgender man, very autistic and going also through a lot of stuff, but I believe sonic the hedgehog will heal me fr
oh, yeah, I post a lot of my daily thoughts, I look like a little lad without graduation but I do have one, an IT grad, I love the silly computers a lot :neocat_cool: I'm still looking for a job btw :neocat_cry:

the tags below are just related to things I'll mostly follow here :neocat_flop: so...

:neocat_heart:

AndrewGiffordphotography, to mecfs
@AndrewGiffordphotography@mastodon.social avatar

Open Medicine Foundation is creating a registry - called StudyME - of people willing and able to support research.

https://studypages.com/s/the-omf-studyme-registry-207141/

You can sign up, or sign up on behalf of someone you may care for - ME/CFS, LC and/or FM.

#MECFS #LongCovid #Fibromyalgia

motionlessmachine, to disabled
@motionlessmachine@mastodon.social avatar

Me, when my disabilities have kept me up all night and I've had enough.

#disabled #chronicallyill #Fibromyalgia #meme

ForfarFairLady, to random

I've had a busy couple of days and am suffering because of them #today. #Fibromyalgia sucks.

We went to look at cars on Thursday and all the salesmen recommended that we DON'T get an all electric car for various but consistent reasons. So hybrid it will be when we decide which car to get. We're waiting until 1st March when the new reg's come out and people will be trading in.

On Friday I saw baby John and we took him to the park. He went on his very first swing and chute and loved them both.

shaknais, to random
@shaknais@mastodon.social avatar

I would never be able to tell if poor posture whilst writing, or writers stress, or the like affected me.

I've got somethong called #fibromyalgia. I am literally never not in pain. The wind on my face feels like pinpricks of fire. Holding a lovers hand feels like grinding the bones to dust. Hell, breathing feels like forcing spikes through my chest.

#WritersCoffeeClub

tomkindlon, to punk
@tomkindlon@disabled.social avatar

Book released on August 27, 2024:
"Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment" by Peter C. Rowe, MD

https://www.press.jhu.edu/books/title/53708/living-well-orthostatic-intolerance

Hopefully will be good. The author is an experienced clinician and researcher.


@mecfs @fibromyalgia @pots @longcovid

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

Frequency of idiopathic intracranial hypertension with ultrasound in patients with fibromyalgia: Relation with function, central sensitization, and neuropathic pain

https://onlinelibrary.wiley.com/doi/abs/10.1111/1756-185X.15066

#IdiopathicIntracranialHypertension #IIH #Fibromyalgia #Fibro #FMS #FM @fibromyalgia

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Stigmatisation in medical encounters for persistent physical symptoms/functional disorders: scoping review and thematic synthesis

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S073839912400065X

"Patients with these conditions have to work hard in consultations to maintain their credibility"

#MUS #FND #PPS #MEcfs #CFS #PwME #IBS #NES #TMJ #MCS #PNES #chronicpain #Fibromyalgia

janetlogan, to spoonies
@janetlogan@mas.to avatar

On top of everything else, I've been dealing with a sinus infection for a bit over three weeks. I saw a doctor this past Tuesday, and got an Rx for Augmentin.

Today, I was feeling better. So what did I do? Yes, I overdid. I decided to assemble my new office chair, among other things.

Now I have a #fibro flare in full bloom. My back especially is on fire, and I'm walking like a 90 year old grandma. This is probably good night. 🤷‍♀️😢

#spoonie #fibromyalgia #pain

@spoonies

janetlogan,
@janetlogan@mas.to avatar

Good night? Ha. In my dreams. Slept maybe 45 minutes. Awake again since about an hour ago. #painsomnia sucks.

#fibro #fibromyalgia #spoonie

@spoonies

ContraindiKate, to mecfs
@ContraindiKate@disabled.social avatar

I'm going to listen into this call from Dr. Peter Rowe with updates about the #RemissionBiome project, starting in a few minutes.

I'm curious to hear how this research is going. Apparently they've received a quantity of funding.

Here's a Guardian article about the Remission Biome project from last year. https://www.theguardian.com/science/2023/jul/09/microbiome-chronic-fatigue-me-long-covid-research

To sign up to join the call:
https://x.com/remissionbiome/status/1750276331307155903?s=20

@mecfs #MEcfs #chronicIllness #pwME #fibromyalgia

QueerMatters, to disability
@QueerMatters@mstdn.social avatar

Ok question for #dyspraxia folk and #ActuallyAutistic folk out there:

When you get to the end of the day, do you ever find that your muscles just kinda ache a little? Like my back muscles ache and feel really strained by the end of the day. And I maybe even feel a little stiff.

Someone is suggesting i might have #fibromyalgia because of my intermitent joint pain. And I'm curious to see if the muscle pain might be linked? I always thought the muscle aches were dyspraxia related? #disability

CuriousMagpie,
@CuriousMagpie@mastodon.social avatar

@QueerMatters I had a #fibromyalgia diagnosis decades before my autism diagnosis. Right now I’m experiencing a fibro flare of intense full body pain and exhaustion.
“Kinda ache a little” might be the first signs, but could also be stress from clenching muscles all day long.
Unfortunately, the previous use of 18 tender points isn’t really used any longer. Talk with your doctor about it - it could be a sign of too many different things to make a quick judgement.

oconnell, to science

Dr Michael Brode, who I interviewed for my upcoming story, was part of a study researching a potential blood test for Long Covid and
https://medicalxpress.com/news/2024-01-unveil-key-insights-covid.amp

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The author, who has ME/CFS, sent me the following to highlight his new book where one of the main characters has ME/CFS and #fibromyalgia.

I don't know anything more.

A few reviews are up on
https://www.amazon.co.uk/Embleton-Murders-Parrish-Thriller-Thrillers/dp/B0CSMY996P/ref=mp_s_a_1_1

#MEcfs #CFS #PwME @mecfs

janetlogan, to spoonies
@janetlogan@mas.to avatar

I had a burrito bowl for breakfast, wit a liter bottle of water. For lunch, I treated myself to a Dunkin Donuts sandwich and an iced macchiato.

I'm well hydrated, and I think the caffeine in that coffee has helped with the #fibro pain.

#spoonie #fibromyalgia

@spoonies

janetlogan, to actuallyautistic
@janetlogan@mas.to avatar

ATL is a huge and busy airport. I've seen maybe 3 masks. Sigh.

It's going to be a long day. Upper back pain has begun. So is flaring.

I'm past security, so I can relax. I'm safe. So why is my brain still in hyper vigilant mode?

@spoonies @actuallyautistic

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

Hello #painsomnia my old friend. It's been a while. Kept nodding off around 9pm, so decided to turn in early. All I've done since is toss and turn.

The pain from the assault isn't helping either.

#spoonie #ChronicPain #fibromyalgia #fibro

@spoonies

janetlogan,
@janetlogan@mas.to avatar

According to the smartwatch, I fell asleep about 5 minutes after posting that. And though I woke a few times to go to the bathroom, I slept until 7:15 this morning.

I can't complain about sleeping almost 8 hours.

#spoonie #ChronicPain #fibromyalgia #fibro

@spoonies

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