Discover and read the best of Twitter Threads about #chronicpain

Most recents (24)

What does #ChronicIllness ‘look’ like. What do those in #ChronicPain ‘look’ like. So many misconceptions by public & those in #Healthcare. I can’t tell you the comments ‘she looks fine’, ‘he doesn’t look like he is in pain’ these misconceptions can harm those seeking 1/ Image
care and they can perpetuate the #stigma shared in society. There is NO ‘look’. There are many ‘faces’ of #chronicpain & #ChronicIllness. These are at best superficial as you don’t know the amount of work outings take or amount of times special events cancelled. 2/ Image
Even when they are doing ‘well’ it’s a struggle. Shared with their permission. A life w #ChronicIllness #ChronicPain Image
Read 8 tweets
(1/3) New review for Pain Warriors! @DZonePodcast

This emotionally impactful #chronicpain documentary captures the devastating effects that a lack of access to pain medication has had on patients from all walks of life.

Please RT/like to get the word out 🙏🙏

#SuicideDue2Pain
2/3 The decisions of policymakers have led to another crisis: an epidemic of #untreatedpain leaving many patients unable to function and many to take their own lives. Watching Pain Warriors was a sobering experience; I left feeling deeply saddened by the injustices of our system.
(3/3) If you think you have gained a complete understanding of the #opioidcrisis from mainstream media coverage, watch #PainWarriors and hear the voices that have been silenced.

#opioid
Read 3 tweets
Thread:

12 reasons that <some> doctors disbelieve patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

1. Doctors tended to see #pwME as having “certain personality traits"

#SickNotWeak #MedEd #MedicalTwitter
bmj.com/content/328/74…
2. Doctors felt that #MyalgicE lacks a plausible pathological mechanism and its symptoms couldn't be ascribed to a precise location

3. There has been variation in the diagnostic criteria for #MECFS which has delegitimised the disease

#SickNotTired
bmj.com/content/328/74…
4. Doctors felt that #pwME had a poor work ethic

5. Doctors felt that #pwME had a poor attitude, they lacked stoicism and did not make every effort to get better as quickly as possible

#chronicillness #MedEd
bmj.com/content/328/74…
Read 8 tweets
I will be sharing my Ph.D. research during the next 30 days #Covid19 lockdown, while I wait for my Ph.D. defence!

My Ph.D. mainly aimed to improve pain care in Nepal.

Paper 1: Nepali Numerical Rating Scale and Global Rating of Change! bit.ly/2JdysnJ Image
Paper 2: Validation of the Nepali Patient-Specific Functional Scale published in our very own @JOSPT. We found that PSFS is comprehensible, reliable, valid, and responsive in people with MSK pain (who r able to comprehend numbers). Full-text: jospt.org/doi/abs/10.251… Image
Paper 3: Clinimetric properties of the Nepali version of the Pain Catastrophizing Scale (PCS). We found a 2 factor structure for the Nepali PCS. The scale is reliable and valid. @DovePress

dovepress.com/clinimetric-pr… Image
Read 24 tweets
I really wish I knew how to explain to people that I’m not being difficult when I say things like

“I have no idea if I can do that thing because I don’t know until I wake up that day whether my body will cooperate.”

(#MySpoons thread.)
I’m really lucky.

When I make permanent friends? I make outstanding friends.

Truly I have great people around

... can’t imagine what it must be like to have the people who are supposed to love you?

Be difficult about an aspect of your daily life.
My friends were not difficult today.

At all. I just wish I knew how to handle these things better.

I thought I would’ve had more practice by now.
Read 31 tweets
@UWMedicine we have delivered cognitive-behavioral, psychoeducational, & mindfulness-based interventions for pain, fatigue, and depression via #Telehealth. Sharing tips we have learned along the way...
1/n
Over the past 10 yrs, we have conducted multiple RCTs, using telephone & videoconference (groups and 1:1) to deliver our study interventions because of our geography.

2/n
Due to #COVID19, we are now moving most of our clinic patients to #Telehealth visits to protect the health of patients, staff, & providers. Many of you are likely doing the same. Here are a few more pointers. @APA @APADiv22 @APADivision38
3/n
Read 11 tweets
🔴 RT to help us hold @PennStHershey Med Director accountable for false claims about #ChronicPain & rx #opioids on KATU-TV 2/12. She smeared her own patients, spread misinformation, & stigmatized all people in pain. We've asked her to apologize & correct the record. /thread
.@PennStHershey: Why do you have confidence in Dr Delone? A kid in your onco waiting room who reads this
@AmericanCancer brochure has more accurate info than she does.
cancer.org/content/dam/ca…
.@AmericanCancer: “When pain meds are taken the right way, addiction is very rare" ('19).

@PennStHershey Med Director: “We know that these do not make you more functional. They make you addicted and dependent.”
Read 10 tweets
"Most patients do not 'get high' from taking #opioids, & #addiction is unlikely if your risk for addiction is low: those at greatest risk have a history of addiction w/ alcohol or other drugs." — Canadian Guideline for Safe & Effective Use of #Opioids #pain #cpp | thread
Current Canadian Guidelines for Safe and Effective Use of #Opioids for #ChronicPain | Info for Patients:

1) "#Opioids are used to improve your ability to be active and reduce pain." nationalpaincentre.mcmaster.ca/opioid/cgop_b_…
2) "There are side effects from #opioids, but they can be mostly controlled with increasing your dose slowly."

Most common side effects: nausea, constipation, drowsiness, dizziness, itching. (Canadian Rx Opioid Guidelines).
Read 16 tweets
.@MedPageToday Your 3/1 illustration about #opioid tapering is so offensive I won't retweet it. #ChronicPain, not the medicine that relieves it, is the ball & chain millions drag behind us. I direct @headsUPmigraine. I know people who died after being forced off safe med. /thread
Shame on you for perpetuating the stigma & misinformation that's ruining & even ending people's lives. "When #pain meds are taken the right way, #addiction is very rare." #opioids #cpp #spoonie cancer.org/content/dam/ca…
#CDC's Guidelines put the rate of non-problematic use of rx #opioids at average 96.97% w/ 3.03% including non-addictive "dependence." Brat 2018 reviewed 1+ million post-op patients & found rate of 99.4% unremarkable use; 0.6% included patients who refilled, @MedPageToday.
Read 9 tweets
1/ #Blame #shame #language & #chronicpain. I’ve been reflecting a lot on the way language is utilized around chronic pain & how it can reinforce feelings of blame & shame. My husband had #pancreascancer besides a #Whipple, chemo and radiation he became more strict
2/ with diet (imo he already was strict) he added increased vitamins went on depression meds examined faith sought counseling. My point, he did multiple things in attempt to address his overall health. No one would suggest that going on depression meds seeing a counselor
3/ would alone address his #pancreascancer we just wanted a comprehensive approach to his health. That’s the same thing I want for my kids’ health issues as well as #chronicpain. I think & this is just my ho that language used by those working in area of pain causes a HUGE
Read 17 tweets
Wow. It has been awhile since I have had as long a streak of this much pain. Heat, ice, lying prone, standing, walking, stretching, adjusting the neurostimulator—nothing is helping except distraction (i.e. Twitter). Pain meds help but that went terribly awry yesterday.
It’s not a coincidence that my big surges in Twitter participation were in 2012 (shortly after I was disabled due to #chronicpain) & 2015 (3 surgeries for a neurostimulator implantation). When I can’t leave the house or even bed, I can still connect on my phone.
I saw the power of Twitter for connection starting with @twilidiot’s #Twilight Trivia live game & connecting worldwide on #toolschat with @LeoWid @michaelqtodd @Twylah. Most of what I know about the potential of social media I learned from that #TwitterChat.
Read 7 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
#Thread So, I got on a fucking roll with writing today during my work date & I wrote 3,492 words. I finished the large body section & fleshed out the outline for the next one. It felt amazing. But in my writing high I didn’t take enough standing & stretching breaks! 😩
So I just got home from post-work date dinner & my body is wrecked. My lower back is flared up & my neck hurts. I for sure overdid it. Tonight I’m going to heavily medicate, but I have a feeling that tomorrow might have to be a read in bed day.
Honestly, I feel so good when I write right now. It really is an adrenaline rush, but I know that pacing myself is the way to sustainably finish this book while taking care of my bodymind. Just because I *can* work fast doesn’t mean I should.
Read 6 tweets
Time for "What's My #ChronicPain Personality Disorder?"

Does continual #pain make you suspect others aren't on your side? Does severe pain make you detach from relationships or restrict your emotions? You have a CLUSTER A Disorder! / thread
When you're in #pain, do you feel excessively emotional & seek attention? ... Congratulations! You're histrionic! (Cluster B)
Does having continual #pain give you an "excessive need to be taken care of"? Join the 17.4% of #CPPs in Cluster C Personality Disorders!

(17.4 strikes me as a little low, peeps. Who's not having enough pain? We should be in the 20s, if not the 30s on this baby.)
Read 12 tweets
1/ A #caregivers perspective on chronic pain: over the last 20 years I have watched my husband and 2 kids struggle w acute and chronic pain. It has been devastating to watch, I can’t imagine living thru it. I am not just angry at @CDC, @supportprop as well as a host of other
2/ for the lack of access to pain meds. For me personally, even before @supportprop and @CDCgov we had issues in 🇺🇸 w quality and access to effective care for pain. I believe that there are various types of pain and various severities of pain. For example I have a friend who has
3/ pain daily but due to some different modalities it’s been controlled wo pain meds. Again people have diff levels of pain she will say it hurts and constant but at this time what she is doing is effective. She does worry if it worsens what life will be like. My point is I
Read 13 tweets
watch Myth 12: Alternatives to pain medicine are safe and effective via @YouTube Myth it is! As a practicing physician of 4 decades i will not treat anyone in pain with a second line rx because PROP/CDC is afraid of first line opiate pain medications.
Watch Myth 11: Addiction and Dependency are the same thing via @YouTube big misconception! adds millions to the fake numbers. There is less than 1% opiate addicted people now and back to the 1920’s. Rare now & rare then. Where are the new CDC addicts?
Watch Myth #10 PALLIATIVE CARE via @YouTube 1st page unauthorized cdc guidelines and many state laws EXEMPT DOSE LIMITS for palliative care. So let’s DO IT. Protects doctors too exceeding the Brandeis/CDC dangerous dose limits for their Z51.5 patients
Read 13 tweets
watch Myth 9: Milligram phobia "this is way too much" via @YouTube I can legally prescribe any dose high, low for standard FDA opiates knowing proper dosing & care will not kill anyone or turn anyone into a dope fiend, the greatest irrational fear of all
watch Myth 8: Overprescribing via @YouTube We are discussing the made up crime that’s not a crime “overprescribing “as viewers wanted more details , which JATH researchers are providing. Coming up in #9 -Milligram phobia
watch MYTH 7 SYSTEMIC INFLAMMATORY DISEASE it not in your head! via @YouTube
Read 10 tweets
My best friend of 42 years yes, 42 years, helps sometimes with transportation. I can no longer drive. 💔
Please help. 😭
I am doing my d*mndest to keep it together and RESIST this 'ADMIN'!!!
Until the last breathe leaves my body...
I've done Aqua Therapy for a year.
The results were minimal. 😔
If my mom can't afford my RX that I have to have.
I can't DIGEST food w/out it.
It's pretty important. 😏
Read 16 tweets
Recent study linking commonly prescribed non-opioid alternatives (gabapentin and balcofen) to increase in #suicide attempts in chronic pain patients #SuicideRisk #ChronicPain newsweek.com/opioid-replace…
Over the period the drugs were studied, suicides attempts after people took just gabapentin rose by 80.5 percent, and by 43 percent for baclofen. The study found that use of these medications increased by 64% between 2012 and 2016.
"We are seeing a worrying increase in harmful exposures to gabapentin and baclofen in U.S. adults over recent years, which may be an unintended consequence of the move away from opioid prescriptions for pain management," said Reynolds.
Read 6 tweets
Many of you know our situation 👇 but today my mom had to use her Target card🎯,(over it's limit), to get a cash advance of $90 to pay for HER meds.
She's on 4 diff.high BP meds.
She's already cut her meds in 1/2 to save $. 😭
McConnell: sign the bill lowering drug costs!!!
My mom is now 78-year-old yrs old.
She's an RN who worked until she was 75.
She had to quit bc my health continues to decline.
B4 the #ACA, we went through our life savings on my #Healthcare.
We even went to the MAYO clinic (I still owe $9000)
No one should go bankrupt bc health
I was a practicing atty when I was bitten by a #tick.
I worked as a defense atty & then w/abused women & children.
Despite a severe rash, meningitis, & flaccid paralysis, I wasn't treated for 11 mos.
By then, the E. Chaffeensis, Rickettsia, & #Lyme was in my spinal cord & brain.
Read 19 tweets
I haven't been great about updating positive health things so here goes:

#thread #EhlersDanlosSyndrome #ChronicPain #mcas #POTS #migraine
I have been on a medication called #naltrexone at low doses for about two months and it's been amazing. I have my life back. I'm able to do things again. Still need a lot of rest, but I feel much better a lot of the time. It reduces the pain some and gives me energy.
I have some new diagnoses including gastroperesis. This means that the doctors are helping me figure out how to handle the GI issues and it's not as confusing what's going on there. The weight loss is under control and I'm getting my liver and some nutritional things checked out.
Read 5 tweets
AIRPORT INACCESSIBILITY: A THREAD
wheelchair assistance!

you have to wait in a line to talk to someone to get a chair

today i sat down on the floor until i could ask sometime for assistance & then someone brought be a passenger chair & abandoned me so other passengers pushed me around to security
hand dryers, soap, and towel dispensers don't register if you're too cold or wearing braces
Read 8 tweets
🚨 This thread provides info about the largest #opioid indictment & settlement in U.S. history whereby Indivior was charged w/ marketing #fraud of #Suboxone. The docs are lengthy but essential reading for all #CPP who have & are being tapered or terminated from their #RxOpioid.
The following is the DOJ announcement of the indictment in April 2019 and had Indivior been found guilty they would have been required to pay $3 BILLION in fines, fees, etc.

justice.gov/opa/pr/indivio…
In July 2019 a settlement agreement of $1.4 BILLION was reached that allowed the parent company of Indivior... manufacturer of #Suboxone (an #RxOpioid used to treat #Addiction and #ChronicPain) to resolve its potential #criminal & #civil liabilities.

justice.gov/opa/pr/justice…
Read 7 tweets
This is ridiculous. Lots of #spondylitis patients use skeletal muscle relaxants and opioids for management of rheumatological pain, and we know how to use them safely. This policy will result in #ChronicPain patients turning to MORE opioids b/c other drugs aren’t available.
Same goes for benzodiazepines used for anxiety disorder which often have comorbidity with chronic somatic diseases. (I honestly don’t know about sleep medicines, but sleep disturbance is obviously a common disabling comorbidity, too.)

The issue, always, with opioids is not…
some magic number like ≤ 50 mme/day.

These are useful for semi-acute prescribing (like for a month after chest surgery) as a level where withdrawal symptoms are likely to be manageable even if sudden discontinuation is necessary, but for chronic pain there’s NOTHING special…
Read 12 tweets

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