Discover and read the best of Twitter Threads about #FIBROMYALGIA

Most recents (24)

I'm working to uproot internalized ableism this year and trying to do some healing around the messages I've gotten around my chronic illness.

What is both sad and empowering is that this year marks 10 years since I was diagnosed with fibromyalgia.

It took 10 years to get here.
Hiding and minimizing pain and chronic conditions is part of survival for so many people. Regardless of how much people admire your skills, limitations in capacity means people implicitly and explicitly write you off entirely instead of thinking about accommodations.
What many people do not know about my story is that I had to take a leave of absence from law school because of fibromyalgia. After taking a year off, I came back, interned for the United Nations, completed clinical work in prisoner rights litigation, and graduated cum laude.
Read 12 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
EXERCISE FOR #FIBROMYALGIA & HYPERMOBILITY SPECTRUM DISORDER (#HSD) 1/4/2020:
@EmLyWill: “Androgens seem to promote growth and maintenance of connective tissues like tendons and muscles. Estrogen promotes similar growth but also rapid turnover-- something not seen with androgens. So musculoskeletal connective tissue will simply be weaker in females”.
“Deconditioning also lowers testosterone further decreasing muscle mass creating a challenging viscous cycle! Regaining lean mass is crucial in #ehlersdanlossyndromes and any #pain condition!”
Read 101 tweets
#IBS & #TMJ: an interesting essay showing why these seeming separate disorders are related; with emphasis on TMJ etiology.
Relation of IBS & TMJ: The nexus is hyper-mobile joints. TMJ occurs in TM joint of face uppermost in people who chronically tilt head; oft associated w. scoliosis (common in #HSD) & d/t Masseter muscle spasm attempting to maintain normal dental occlusion.
#IBS is associated with ligament laxity of SIJ & autonomic nervous system impingement within contiguous presacral plexus, which tracts to intestine; #IBS is a #dysautonomia. These are my clinical observations and theories
Read 17 tweets
“Hip” is socket (acetabulum) where femur (upper leg bone) inserts into pelvis (ilium/ischium). If hip were to dislocate, person would have excruciating pain & be unable to stand/walk. Sacroiliac joint (SIJ) is 17 cm square in area; vs. ilium & sacrum/coccyx (tail bone)....
SIJ commonly subluxes in pwHSD, generating painful ligament stretch interpreted as low back/hip pain in 13-30% pwLow Back Pain. When SIJ subluxes, Ilium rotates CW or CCW around a virtual transverse axis from Right to Left & through both mid-SIJs ....
Rotation of Ilium relative to Sacrum creates an oblique relationship of contours of the two bones. In a lean person, & depending on whether there is a CW or CCW rotation, the tail bone can appear to become stationed closer to the hip region on that side....
Read 15 tweets
💥💥💥 BREAKING NEWS! 💥💥💥

There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
Read 3 tweets
How to make cannabis coconut oil capsules, a thread.
Start off with some cannabis coconut oil 🙄 empty capsules & a capsule filler machine
#IAmCannabis #illegallyalive #420suffragettes #CRPS #Fibromyalgia 💚🌿🖖
Put the empty capsules into the capsule filler & put the cannabis coconut oil in some boiling water to melt it.
Using a syringe, draw up the cannabis coconut oil & dispense into the capsules.
Read 5 tweets
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
First take a load of crappy auto weed you started on the windowsill & finished off while you were in prison, doesn’t look much but it’s not bad considering 🙄 also using this article on how to make cannabis coconut oil as they give different instructions leafly.com/news/lifestyle…
Grind up the plant material in a mini blender. Put the coconut oil in the slow cooker & add the cannabis. Mix well, turn on low & then find something useful to do for 4-6 hours, volcano time 🙄😁 remembering to set a timer, just in case 🙄😂
Well, it’s had 4 hrs 30 & it’s been smelling lovely for ages now so I’ve turned the slow cooker off & I’m gonna just let it sit in that heat till it’s had 5 hrs. As a general rule when decarbing weed, when it smells good, it’s done! The oil looks quite green too, good sign 🤞
Read 7 tweets
I have a brain tumor/IIH & such severe intestinal damage that I can't digest food w/out enteral food RX.
It's $198/mo even w/a pharma scholarship.
My now 77-year-old mom is my caregiver & she can't afford it.
We get $64/mo for food + trying to save home. Please help!
In 2011, I was bitten by a tick. I contracted E. Chaffeensis, Rickettsia, & Lyme. I wasn't treated for 11 mos. The bacteria went to my spinal cord/brain.
Please help us 💔
#Lyme #IBD #Fibromyalgia #Spoonies
During 1 of my numerous hospitalizations, I caught Vanc-resistant C. Difficile for 3.5 yrs & had to have 2 FM transplants.
I can't digest/ absorb food w/out EnteraGam.
It's norm. $1600/mo but I get a pharma discount, making it $198/mo. My 77-year-old mom still can't afford it.
Read 8 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please help us! 😭
Can't afford next mos.' RX @$198/mo necessary to digest/absorb food.
My now 77-year-old Mom is my caregiver. We get $64/mo for food (long gone) + trying to save home.
#Lyme #SaveOurCare
#Fibromyalgia
#IBD
Even $5 or $10 will help + RTs are free. 🙏
I was bitten by a #tick in 2011 & it utterly destroyed my life.
I contracted E. Chaffeensis, Rickettsia, & what was later found to be #Lyme.
I wasn't treated for 11 mos. By then, the bacteria had invaded my spinal cord + brain.
#LymeDisease #healthcare #tick #foodstamps
Read 16 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please help us! 💔
I was a practicing trial atty when I was bitten by a tick. I contracted E. Chaffeensis, Rickettsia, & what was later determined to be #Lyme.
I also contacted Coxsackie B4 virus-a cousin of polio. I wasn't treated for 11 mos. I have lost most use of my left side (I'm left- handed)
Read 17 tweets
DIAGNOSIS: FM, hEDS, & HSD
#Fibromyalgia, #HSD, & #hEDS are subjects of this Twitter Thread. I am a General Medical Doctor who encounters these types of patients.
Undoubtedly, #HSD & #hEDS have genetic underpinnings. My speculation is that the majority, but not all, of the #fibromyalgia patients have clinically manifest joint hyper-mobility & genetic variations as part-cause of their disorders. Below I suggest a study of this matter.
Besides the usual Beighton hyperextensions, clinical manifestations of hyper-mobility include scoliosis (vertebral spine disks are specialized ligaments) & Genu valgus & varum, but that is not all ...
Read 25 tweets
Good morning! It's May 1, and in honor of Brain Tumor Awareness Month, I'm going to do a thread about my brain tumor, Astro. 1/

#BrainTumorAwarenessMonth #BTAM2019
Astro is a WHO Grade 2 Diffuse Astrocytoma of the medulla and cervical spinal cord. He reaches
from about my pontomedullary junction to the mid portion of my C2 vertebra. 2/
He's oddly shaped, but measures in at just under 3 x 3 cm on MRI. (That's after he lost a little bulk in October 2017 following chemo and radiation therapies. He hasn't really changed much since then.) 3/
Read 17 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please take a moment & read our story. 💔
NEWS!
I just found out that I will be getting $514/mo for SSI but that has to go towards our home & bills/food.
I still need help w/$198/mo RX.
Also received notice that foodstamps will be CUT to $15/MONTH! 😭
Who could possibly eat on 50 cents a day or survive on $17.13/day?
Read 20 tweets
Thread
She takes care of ME-Life sure has a sense of humor.
#MothersDay
My brother we lost in an auto accident at age 19. #MothersDay
My best friend and reason for fighting my illnesses. #MothersDay
Read 25 tweets
My life in pictures. To all my fellow sufferers of #Fibromyalgia #CFSME I love you, you are not alone. We are not less because our lives have changed. We are not mere shadows of what we once were. We are living proof that we can not only survive what life throws at us, we thrive
Yes we get knocked down, friends abandon us along the way. We are misunderstood, called lazy and more. Yet we know that we endure things others wouldn't dream of. We get back up each and everytime! We have more courage than most will ever know.
This disease does not define us, nor does it shape our future. We will continue to fight back until they find a cause and a cure.
Read 13 tweets
Thread. Medical Hysteria and #InternationalWomensDay

In 1882, Anna O is considered 'patient zero' for the diagnosis of "Hysteria"

#Hysteria was originally a diagnosis only given to women

Anna O fell ill in 1880 after her father died, possibly of Tuberculosis
2. Her symptoms: severe 'nervous' #cough, paralysis, numbness, vision/hearing/speech disturbances, hallucinations, #cognitive difficulties

She was diagnosed with "Hysteria" by Breuer and Freud in ~1882

#InternationalWomensDay
3. Breuer claimed that he cured Anna O of #Hysteria using 'talking out' therapy (a very early forerunner to #psychotherapy)

His claim was false

#InternationalWomensDay
ncbi.nlm.nih.gov/pmc/articles/P…
Read 13 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
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 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
I own it. - Thread.

I had a job with a good salary, I was healthy and happy. I followed media and would hear people grumbling about benefits.

And in my head I would shout 'don't like it get a job'! Yes, I was 'one of those'.

Cont
Never having experienced the welfare benefits system I was naive, foolish, gullible.

In 2007 everything changed, rapidly. By 2009 I was unable to work. My physical disability did not sit well with me, this wasn't me, this wasn't going to be me. I was determined to get better,
Return to work. That didn't happen, I became depressed, suicidal and I took an overdose. Had to be resuscitated twice (in part I still wish they hadn't bothered).

I have had to fight and endure the humiliation of justifying my existence and literally beg for help from the state
Read 8 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
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please read my mom's gofundme & help in any way possible. We are struggling to survive. RTs help. 😭
In 2011 I was bitten by a tick (after being on antibiotics for 19 yrs). My rescue dog was bitten & died the next day. Wasn't treated for 11 mos- I had E. Chaffeensis, Rickettsia, & prob.#Lyme in spinal fluid & brain. Caught Coxsackie B4, cousin of polio & lost most use of L side.
Read 10 tweets

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