Recap for Bateman Horne Center Support Group: Love Relationships and Illness May 20, 2025
https://batemanhornecenter.org/wp-content/uploads/2025/06/20250520-Support-Group-Recap.pdf
Hashtags:
#chronicillness #Spoonielife #chroniclife @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
@disability @longcovid
#LongCovid #PASC @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #dysautonomia @dysautonomia #chronicpain @chronicpain #POTS @pots
Poor results from this ME/CFS +/or Fibromyalgia service in Canada
"Health outcomes of patients in the Complex Chronic Diseases Program"
https://bcmj.org/articles/health-outcomes-patients-complex-chronic-diseases-program
"New approaches & research are urgently needed to improve therapeutic interventions for patients with complex chronic diseases"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
Every month I curate a list of what I’m reading/listening to/pondering. This week it’s all about fairy tales, victories large and small, and living through a flare. https://allysonshaw.ghost.io/fertile-battlegrounds/
#AmReading #ME/CFS #Fibro #Gardening
I've *finally* got my beta guide to #LOTRO's Furtherholm to a point where I can share it with my friends on Patreon.
It's been a slog. Not because of the content, which IS fun. And not because of the area, which IS lovely.
But because my #fibro #pain is sky-high due to whatever this bug is we're all fighting right now.
I've made a to-do list for Monday, as there are bits I need to finish and the bullroarer rewards to add.
But now, I'm switching games to rest.
Some low-energy products for washing one's hair
From: May 2025 Caregiver Call Summary
Links:
https://www.walgreens.com/store/c/walgreens-rinse-free-shampoo-cap/ID=prod6293401-product
Hashtags:
@chronicillness
@spoonies
@mecfs
#ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #POTS @pots @fibromyalgia
#Fibromyalgia #Fibro #FMS
#chronicillness
#chroniclife
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
🧵
Medscape (widely read by health professionals):
‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms
https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd
(may require free registration)
Thought this was good & interesting.
@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
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"University makes 'ground-breaking' discovery offering hope for chronic pain sufferers"
2-minute video clip plus article from Scottish TV news features woman with #CFS & #fibromyalgia
#chronicpain #rheumatoidarthritis @chronicpain @chronicillness @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#WritersCoffeeClub June 8. Talk about something you wrote and later removed, and why.
A scene in book 2 of Ruarnon Trilogy, where my characters piece together clues to determine a key element of the enemy's unknown motives.
I removed it because... brain fog due to #Fibro made me forget I wrote the characters having the same revelation twice, and this was the not as good version.
Regards #Fibro #Fibromialgia, does anyone get any relief with muscle relaxants of any kind? #Spoonie #NEISVoid
You know what the depressing/distressing thing about seeing your tweets flash past while @cyd migrates them to BlueSky?
That the care and treatment of #Fibromyalgia is no different in 2025 than it was in 2018. It's why I have days/weeks of just "Survival Mode", why I can't do what I want to, or get content or stories done when I hope to. Why doing literally everything - or nothing - hurts.
"Chronic" means 3 months+. I'm a couple of decades from it starting...
Groundbreaking discovery of 'new' pain target brings hope for those with chronic pain
"This finding could lead to new pain relief treatments for such conditions as fibromyalgia, exercise-induced muscle pain (DOMS), rheumatoid arthritis, and chronic pain after spinal surgery."
https://www.abdn.ac.uk/news/24440/
Going to the Doctor When You Have a Chronic Illness
Hashtags:
@longcovid
#LongCovid
#chronicillness #ChronicallyIll #hiddenillness
#invisibleillness @chronicillness
@spoonies
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #IBS @ibs #PosturalOrthostaticTachycardiaSyndrome #POTS @pots @mecfs
#MEcfs
Postacute COVID-19 syndrome & fibromyalgia syndrome are associated with anti-satellite glial cell IgG serum autoantibodies but only fibromyalgia syndrome serum-IgG is pronociceptive
https://journals.lww.com/pain/fulltext/9900/postacute_covid_19_syndrome_and_fibromyalgia.893.aspx
Screenshot from Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #Fibrositis
From ME Research UK:
Symptom invalidation (also known as medical gaslighting) may lead to diagnostic delays for people with complex chronic illnesses like #MECFS finds a study published in the journal "American Psychological Association". Read more: https://bit.ly/451riym
#chronicillness #invisibleillness @chronicillness @spoonies #spoonies #spoonie @mecfs @fibromyalgia #fibromyalgia #fibro #longcovid @longcovid #hiddenillness @pots #pots
Upcoming "#MECFS & #Fibromyalgia Self-Help Program" course.
https://cfsselfhelp.org/online-courses/introductory-self-help-course
Comment: I have no financial interest in this. I haven't done it myself but have heard people praise it. Not free but this is within the budget of many people.
#CFS #PwME #Fibro #FMS @fibromyalgia @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
It's one of those nights again... :parrot_sad: My #AuDHD is "fighting" with my #Fibro again... If that makes sense... 🤔
My body is aching. My mind is wired and wants to do all the things that my body can't do right now. I feel so tired, but my brain isn't letting me relax. It's trying to push me into getting active. But, my brain is also giving me a headache. All I want to do is lay down, watch TV and doze a bit. But my brain keeps telling me that I am being lazy and I should keep going.
I just took one of the extra meds that I have, and hope that it can calm my mind. I will need to get some more of these before the surgery, so that I have a few extra, should I need them and not be able to just get them. I have a few left. And I am still grateful that the GP took me seriously and gave me a chance to try this out. It's not taking all the pressure off, but... It helps me to relax a bit better when I need it.
I know that some exercise usually helps me to feel better. But, trying to get exercises in when my brain is making my head hurt, it's never a good combination. So now, I hope that my pill will kick in, let me relax, calm my mind... And then I may be able to get some exercises going, to help me feel a bit better physically as well.
I did manage to pause the fitness subscription for the first 4 weeks after the surgery. I can add a max of 4 more weeks to that, if needed, and then my "freezes" are up for the year. But it should save me some euros when I can't use the fitness. 😊
Let's put away the tablet and hope for the pill to do some magic for me... I already started one of my "feel good" series, so that usually helps a bit. Fingers crossed 🤞🏻
Catch you all later folks! Thanks for hanging in there with me.
:pixy_party: 💜 🍀 🐾
#WritersCoffeeClub May 29 Tell us about an epiphany that changed your writing.
My ADHD cannot be forced into focusing on writing a novel. I can tune it in with listening to fantasy related music, watching or reading fantasy books. I can want to do it more because I couldn't focus or my #Fibro didn't have the stamina to write for so long. But my ADHD brain to write is a pointless waste of time.
Go with the flow is how my books happen.
A belated _actual_ "hi". I feel a bit of a wreck. Today's felt very long, with the journey to (and having) my very-intense and stressful autism assessment, then we had accidental miscommunications with the wider family (all sorted now) and NJ in one of her up-and-down moods.
My #fibro pain is awful, the worst it's been recently, even with the current trend. I'm glad to finally be on my own, so I'll be heading into #FFXIV for #owntime shortly.
I am currently experiencing what is possibly the worst #fibro flare of the last two or more years. I'm spending the day in bed. I need to be doing wedding prep and I just don't have the physical or mental capacity to do anything. 🥺
Changed my bedsheets, finally. Yay but also boo. Was going to have a shower today but two things is too much for one day. #ChronicIllness sucks, esp if you're destitute. #fibro #mecfs #eds
