Discover and read the best of Twitter Threads about #chronicpain

Most recents (24)

A Twitter friend of ours sent us some gluten free food about 2 yrs ago.
My now 78-year-old mom & I get $72/mo for food.
Please help!
A thread explaining my medical situation.
Charles Gaba & Topher Spiro have written articles about us. We are legit.
I have a brain tumor/IIH & such severe intestinal damage that we need $198/mo for the RX that allows me to DIGEST food. 💔
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
My name is Dawn Anderson, & today I should be celebrating my 54th brithday.

I was a grandmother, mother, aunt, & dear friend.

I was also a #ChronicPain patient.

I used #opioid medication to maintain a decent #QualityOfLife.

I was forcibly tapered from my pain meds in 2016.
I found other patients who were suffering because of the #WarOnDrugs, & I cried out for help.

I shared my story with journalists.

I wrote my PCP a letter.

I attended a #DPPRally with my daughter @AmandaLatronica. I'm so proud of her. She's a #warrior!

painnewsnetwork.org/stories/2019/3…
In March 2019, my kidneys failed me, & I ended up at the hospital.

I was strapped to a hospital bed & injected with thorazine because I was confused.

The pain was horrific & STILL-no one listened. #PainStigma

I decided to let go on March 11, 2019.

I refused dialysis, & died.
Read 6 tweets
I've been sitting on this personal news for several days, weighing whether to share it. Oh, what the hell.

For nearly a year I've been feeling an overwhelming fatigue far greater than I've ever experienced before w/my various #ChronicPain & #fatigue conditions.
Doc ran a bunch of tests, changed a few meds, but cdn't figure it out cuz nothing changed. But a pattern is finally shown up in 1 critical test result

My blood platelet count has begun dropping like mad, starting w/2 pts below low normal [158] a year ago to 90 last mo & 73 this
That can indicate a number of causes, but for someone w/Sjogren's [an autoimmune disorder] the likeliest is lymphoma, as that is the most serious [tho rare] condition associated w/Sjogren's.

I'll be sent soon to a hematologist for more specific tests to rule out other causes.
Read 6 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
#ChronicPain #painpatientsvote #opiatecrisis #opiates #dontpunishpain #cpp
I’ll try my best to explain what living with severe daily chronic pain is like and the fear we face over forced government dose cuts :
If you’ve ever had a major surgery imagine the fear you would have if the doctor sent you home in excruciating pain with no Med to help it . Now imagine if that happened and there was pain for days you couldn’t do anything about.
No “just go to the doctor and they’ll fix it feeling “
No “this is bad but it’ll be over in a few days “
Read 18 tweets
For those of you that follow me, my friends I consider family, I haven't been on today bc I had a bad fall.
It was in the bathroom & I hit the tub & toilet.
Mom was at the grocery bc we got our $72/mo SNAP.
I lied there for an hr bc I couldn't get up. (Like those comm.)
I'm ok...
As many of you know, I already have ruptured discs, congenital disorder which is where your spinal cords doesn't have enough space in your sheath, a syrinx, & multiple bulging discs, osteophytes, etc...
I just really whacked my back.
Mom is w/me now. She's an RN.
Thx RTing Gfm 💕
Thank you all for RTing my Mom's medical Gofundme.
It's my pinned Tweet.
It's also Mom's pinned Tweet @DemForLife3. 🙏 (((hug)))
Read 19 tweets
Sharing again because there's a huge population I ignored in writing this: Pharmacists. A recent interaction left me in tears- not for the reason you'd think- when yet another pharmacist refused to fill pain meds. We both yelled but it ended with a hug. 1/
chicagotribune.com/columns/ct-liv…
I was out of state when my Rx was due. the VERY pharmacist I quote in my column who invoked her right not to fill for me was working while I visited family in GA. She again told me no, again came with attitude. Knowing I would have to book a last-minute flight home and miss my 2/
twins' b-day party, I confronted her. I said look, I know nothing is changing today and you're not filling this. But this is out of control. I go between these two states often, I work as a reporter in Chicago, I actually just wrote a column about this. And 300 people wrote me 3/
Read 25 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
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
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
Today I’m going to discuss an important and frequently misunderstood topic among physicians of all specialties, that of narcotic tolerance. A thread. #pain #chronicpain #tolerance 1/x
If someone is on chronic opioid therapy, they may present with conditions that require additional therapy. Whether it is a recent surgery, a flareup of their chronic condition, or a new injury, you should realize that despite their current medication regimen, 2/x
they may require additional therapy to relieve their pain. They have built up a tolerance to narcotics. This means they need more of the drug to obtain the same analgesic effect. 3/x
Read 27 tweets
Thread:

#MECFS patients face disbelief that they are sick

Many #MECFS patients are told that they are simply tired, stressed, anxious, depressed, lazy or malingering

How can #pwME respond to such disbelief and lack of understanding??????

See thread below:
2. Below are 7 evidence-based scientifically supported findings that you can use to inform those who dont understand that #MECFS is a multi-organ, systemic and severely debilitating illness

From a lovely review by @HarvardAskDrK in @JAMA_current
ja.ma/2xF3WNT
3. #pwME have deficiencies in 3 organs important for the body's hormonal balances called the hypothalamic-pituitary-adrenal axis

Importantly, the deficiencies observed in #MECFS patients are quite different to that seen in #depression
Read 10 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
I waa bitten by a tick in 2011 & not treated for 11 mos.
Went to the Mayo Clinic-found Coxsackie B4 virus (a cousin of polio) which left me w/out most use of L side (L handed 😪).
I caught Vanc-resistant C. Difficile, had 2 FM transplants & need RX @$198/mo just to digest food.
Drs back in Louisville eventually discovered tick bacteria (E. Chaffeensis, Rickettsia of unknown etiology, & #Lyme-Dxd 1 yr later). All went to spinal fluid & brain.
Have had 8 spinal taps.
3.5 yr C. Diff/2 FM transplants left me unable to digest food w/out enteral RX @$198/mo.
Read 6 tweets
Good morning. Still in pain though I slept better last night by doubling all my OTC meds before bed. My partner wants me to go to the doctor & I just laughed because what doctor is going to give a black woman a prescription for pain meds in this opioid crisis era?
If I sought medical help right now it would be from an urgent care clinic. I can’t even get an appointment with my primary care person for 6 weeks. This is with pretty good insurance from a research one university that has a whole hospital/medical system associated with it.
I know how doctors see me when I talk about my chronic pain. Why bother? #MedicalRacism #ChronicPain
Read 3 tweets
Yall I’m on day 3 of the worst pain flare up I’ve had in 6 months and we’re now at the point where I just have to choose to between being in less pain but so unfocused from drugs that I can’t really work well and being in so much pain that I can only work in small bursts.
I honestly feel like my bodymind was waiting for the semester to be over and then just fell apart. The pain literally started Monday night after I gave the final exam for my class and has been pretty relentless since.
My disability studies, disability justice brain is telling me to just chill out, take care of myself and not worry about doing work for a few days, but wow does my Type A, internalized oppression brain really rebel at that notion. Phew. Sometimes the inside of my head is a trip.
Read 6 tweets
🚨🚨🚨ATTENTION #Spoonies #ChronicPain community, people have been asking for the recent clarifications from the @CDCgov and the @US_FDA to take to their #Doctors, so I have created a pinned tweet with everything. #Opioids 🚨🚨🚨
👉👉👉The @CDCgov clarification appears in an article in @NEJM here nejm.org/doi/full/10.10…
👉👉👉with an accompanying press release: cdc.gov/media/releases…
👉👉👉A quick way to see most of the article, a separate letter issued by the CDC Director @CDCDirector and the @US_FDA warning is to go here: …lthprofessionalsforpatientsinpain.org
Read 14 tweets
@chillibeanboy I am torn between Warren, Harris, Biden, Buttegieg.
Warren: Policies
Harris: Intelligence/Fierce
Biden: Experience/ Foreign policy chops (relationship with every world leader)/COMPASSION
Buttegieg: Intelligence/Spirituality/ Representation
Biden/Harris ticket!
Or Warren/Booker
@chillibeanboy `\_(··)_/´
I can't decide this early-after the 1st Debate, the choices will narrow bc it will separate the wheat from the chaff.
As awesome as the field is, each one has their own baggage.
The ones who "hang a lantern on their issues "will prevail.
#VoteBlueNoMatterWho is nominee
@chillibeanboy Trump/GOP obviously see Biden, Warren, & Buttegieg as the biggest threats based on his Tweets & attacks.
Watch what they DO, not what they SAY.
We must run on Healthcare, Wages/Inequality, Foreig Gun Safety, & Climate Change
Read 13 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
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
1. thread.

Nice @FrontPediatrics paper providing guidance for docs and #pwME in the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#MedEd #MedTwitter #chronicillness #chronicpain #SickNotTired
frontiersin.org/article/10.338…
2. #MECFS is commonly misdiagnosed as a #somatic disorder

#pwME "..have been humiliated or dismissed by other providers, so [doctors] will need to be.. nonjudgmental.. & acknowledge that #MECFS is not a #psychological condition but a real illness"

frontiersin.org/article/10.338…
3. #MECFS symptoms can be diverse, complex, fluctuate and overlap with many other conditions making the diagnosis difficult

This @FrontPediatrics paper lists 33 (!) co-morbidities commonly associated with #MECFS

#MedEd #MedTwitter #pwME #SickNotTired
frontiersin.org/article/10.338…
Read 8 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

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