Discover and read the best of Twitter Threads about #FIBRO

Most recents (14)

Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
1/ I am one of the admins of a caregivers facebook page. I'd like to help others find the info they need to be good caregivers. I am not slanting this toward anything specific, though I am clustering around: #EDS, #EhlersDanlos #ME #CFS #Fibromyalgia #Fibro
2/ I know some of you are: patient, caregiver or both. I'd love to hear the thoughts/advice you'd give a caregiver (please be clear about your role if you are comfortable doing so). Also, if you have websites you think are great too please share - some are listed below.
3/ @JanetDafoe I know has given a lecture and it is captured in this video. Maybe there are other resources you'd like to share?
Read 7 tweets
I was bitten by a #tick in 2011 & it's turned my worle upside down!
I was a practicing trial atty & am now on a walker.
I contracted E. Chaffeensis, Rickettsia of unknown et., & #Lyme.
I wasn't treated for 11 mos. By then, the tick bacteria had invaded my spinal fluid/brain.
Read 12 tweets
There is so much to unpack about gender and #chronicillness, I barely know where to begin. But let's give it a go. Data THREAD first, personal experiences second. (1/9) #millionsmissingspeakout #pwME @MEActNet
Up until very recently, the majority of medical research has been performed on men. It used to be against the law to include most women in clinical trials. Even after that law was overturned, a second had to be enacted requiring we be included. #pwME (2/9) tinyurl.com/y35rtwzv
The difference in the way women present symptoms and the ignorance around this kills.
When women have heart attacks, for example, the typical symptoms veer sharply from what med students learned from their textbooks. (3/9) #millionsmissingspeakout #pwME psmag.com/social-justice…
Read 9 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
1/This care partner's tale in 9 tweets.
Son 35 yrs. Undetected spondylolysthesis and other musculoskeletal issues uncovered at 13 yrs due primarily to onset of pain during a period of rapid growth.
2/ First emergency spine fusion at 15 yrs after 2 yrs of medical profession denying that kids have pain. Teens are an invisible health care population.
Columbine happened in this period.
Every teenage boy in America had a target on their forehead.
Pain became 'kid wants drugs"
3/ Fusion failed. #FailedBackSurgerySyndrome
Blame the kid for failure to heal. Medical message: Shift the blame. Teach the kid that cure is his fault.
Teenage cutting, self-harm distracts from daily pain.
Back into surgical revision2 @ 16.
Read 9 tweets
A frustrating thing about having #fibro and sensory sensitivity is that all of a sudden things people always did that you never noticed?

Now endlessly bother you or affect your health.
And I don’t mean “bother” as in ”that’s annoying” - that would imply the ability to suck it up.
But I literally can’t stand the sound of yelling. But 2 sets of twins under 12 live here.

And 3 of them are boys. I usually wake up to loud yelling or screams.
Read 15 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
This study looked at 270 people with #fibro, a condition that receives even less funding than #mecfs and is still ridiculed by many MDs. 46% had spinal stenosis and 20% had Chiari malformation!! #Nightingales link.springer.com/article/10.100…
The authors conclude: “We recommend detailed neurological evaluation of patients with #fibromyalgia in order to exclude cervical myelopathy, a potentially treatable condition.” #Nightingales
There is a strong case right here that medicine is massively failing these patients by denying access to diagnosis and care *that it is already quite capable of providing.* #Nightingales
Read 11 tweets
A4. Yes because I trust your word @DawnMGibson.

I am newly diagnosed with Arthritis in my right hip. I've been complaining about my hip and walking with a cane for years. #SpoonieChat
A4. And I learned so much for #ACR18 and @CreakyJoints and @DawnMGibson's #Painsomnia interview.

#SpoonieChat
A4. It gave me lots of opportunities to learn about #fibro (which is often treated by Rhematologists.)

And I'd never heard of patient posters. There was so much sharing. I was so imoressed with the patient involvement at #ACR18.
#SpoonieChat
Read 3 tweets
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
All I did was go to the doctor. Only 700 more steps than a normal day. But when I say I'm exhausted? #fibromialgia
I mean my body got to the point where I couldn't make it from my front door to my bedroom. #Fibromyalgia
I was too spent to eat. To walk. To think. To understand and Rey to words. My nephew kept trying to tell me something & after he repeated it twice, I finally had to tell him I couldn't hear him but couldn't listen.

For five minutes I could only sit there, breathing.
Read 4 tweets
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.

What's c. 1880 is new again.

thetimes.co.uk/article/kirsty…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
Read 26 tweets

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