Discover and read the best of Twitter Threads about #fibromyalgia

Most recents (24)

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
1/
Summary - this paper is a WEALTH of information for #MCAS

Pain is found in more than 75% of #MCAD patients

There is no official guideline for treatment of MCAD. The paper is about mediator-induced acute & chronic pain + therapy options

Prevalence of #MCAS in Germany is 17%
2/
Wide-spread distribution and differences in mediator expression mean all organs/tissues are affected & presentation is very diverse

Can present oppositely among patients or even in the same patient at different times, or in different sites in a patient at the same time
3/
Treatment involves trigger identification/avoidance + control of mast cell mediator production/action.

Mast cells and the nervous system influence each
other’s responses through mediators and cytokines

In the periphery mediators can stimulate receptors, resulting in pain
Read 19 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
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
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
Hello & Happy Spring! (Thread) If you haven’t been on here til 1am EST, I’m going to unpack recently announced #opioid bill S-724 (named for John McCain). For reax check out threads by @erinbiba and @AnaMardoll (call @gillibrandNY ASAP to protest bill.) Onto the breakdown:
Sen. Gillibrand introduced this bill with a flip referral to dental work and a misunderstanding of the term “acute pain”. #AcutePain does not mean ‘severe’ in medical terms, it means pain lasting up to/less than 6mos. If you’ve ever had a gunshot wound,
been in/had a serious accident, needed extensive surgery, had #fibromyalgia #arthritis #endometriosis or #pelvicpain #backpain -just to name a few-you may know that sometimes one needs more than 7 days of pain meds.
Read 17 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
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
A5. From decades of activism through my other identities & my cultural background, it’s easier for me to see how everything is related.

Illnesses that are portrayed in media anywhere in the ballpark of properly get attention & research.
#MedTraumaChat
A5. There’s so much silence around #cancer that we only see one small sliver on tv.

And that one small sliver tends to correspond to the outsider view people have.
#MedTraumaChat
A5. Invisible disabilities have almost zero visibility. And when we tell the stories ourselves & via insiders like with @jenbrea in #Unrest we get accurate narratives that illuminate.

#MedTraumaChat
Read 7 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
.@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
Given that it's #Fibromyalgia Awareness Day in the middle of #EhlersDanlos Awareness Month, let's talk about misdiagnosis.

People with hypermobile EDS or Hypermobility Spectrum Disorder often spend years misdiagnosed with fibromyalgia…

#fibroawarenessday #EDSAwarenessMonth
…I meet people with really clear signs of hypermobility who've been diagnosed with #Fibromyalgia by rheumatology, treated at pain management clinics, or even seen physiotherapy.

None of those professionals seem to know to screen for hypermobility syndromes…

#fibroawarenessday
…This is important because hypermobility syndromes have a physical basis for joint pain that can be improved by multidisciplinary management.

Occupational therapy can provide equipment and teach behavioural changes that reduce stress on joints, Orthotics can support ankles…
Read 8 tweets

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