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Discover and read the best of Twitter Threads about #chronicpain

Most recents (24)
I was going to do this hours ago. Then I thought about stories from my life and I was overwhelmed.

Also I hate to being up problems without talking a little about solutions.
So toward the end I'll talk about some things I've tried to fight back with varying levels of success.
Read 56 tweets
My name is Lelena.

I am a #ChronicPain patient.

I am required to pee in a cup monthly to show #compliance to my #LowDose #opioid regimen.

I am painted as despicable, helpless, & #unclean by the powers that be.

I am a modern-day #Leper.

#EndStigma #PainLeper
Newsflash, America:

I'm not JUST a #ChronicPain patient.

I am not helpless.

I am not #unclean.

I am not #despicable.

I don't just use #pills to overcome my #SeverePain.

I refuse all #stigma, misconceptions, assumptions, and #labels.

I am an #Overcomer.
I will be criticized for calling myself a #ChronicPain patient.

People will say: she wallows in illness. She enjoys it! She IDENTIFIES with her pain.

Wrong. It is part of my reality. I must face it & battle it daily.

And I do. Despite all the negativity I face from others.
Read 5 tweets
I just forgot my effing address. For a full minute I couldn't remember the name of my street.

But wHy cAN't yOU wOrk a rEgulAr jOb?

They like you to know basic things like where tf you live. This is terrifying btw. TERRIFYING. #brainfog
The reason I'm even so tweaky about this is that I'm writing down all my information for a benefits interview today. I had another brain fart of not being able to remember my primary care physician in Maryland.

Best doctor I ever had. Always recommending her. Total blank.
I didn't actually recall on my own either. It just eventually dawned on me that her name is my phone contacts.
Read 7 tweets
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starting the day with drugs is not as fun as it sounds #chronicpain
strong cannabis cookie, 1/2 soma, 600 mg ibuprofen, 1/2 a joint, heating pad, and now we wait. #migrainemorning #backpain #walkinglikeagnoll
a whole nother joint and several hours later, i can move and managed a shower! now to eat breakfast and then probably rest again. I've got schoolwork to do, laundry and dishes piling up... i will do what i can do today #spoonie #chronicillness
Read 12 tweets
I just sobbed for the past 20 minutes.
@AdyBarkan put into words what I havenโ€™t been able toโ€”cannot wait to talk to my therapist about it.

Iโ€™ve had #chronicpain for ~15 years now (Iโ€™m 30), and I was just diagnosed with Crohnโ€™s disease last Friday.
Up until recently, Iโ€™d push myself beyond the painโ€”my family, my friends, and my students were worth it!
I might be out for weeks after a charity walk or a protest march, but it was worth it!

But now, it feels like my body went on strike. I canโ€™t push it anymore.
Read 6 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
If Harvard is willing to publish unresearched #chronicpain articles with at least 4 errors, what hope is there for patients? health.harvard.edu/newsletter_artโ€ฆ
There's also no author. And how can something be published in Otober 2018 when it's September? @HarvardHealth who wrote this?

And why? Over-prescribing hasn't been the problem for almost a decade.
Not many state laws make exceptions for chronic pain and when they do, doctors are terrified of prescribing.
Read 7 tweets
A6a. Yes. Doctors think I can handle more pain because "women can undergo natural childbirth."

[insert Nah cat gif here!]
#medtraumachat
A6a. First, I haven't. B- Childbirth isn't endless #ChronicPain that has no predictable end. #medtraumachat
A6a. Yes, I think there is a physiological aspect.

The reason I declined spinal surgery in the 90s isn't that the odds were 50/40/10 that my pain would get better, stay the same or get worse. #medtraumachat
Read 4 tweets
I stayed up & did all my work so I can get some much needed rest today & dammit all I want is to find a comfortable position that doesn't make my legs hurt or for the medicine to work or for the muscle relaxer to knock me TF out or for the Biofreeze to work!
#fml #chronicpain
Fuuuuuuccccccck!!!!!!
One of those days that I'm glad I documented my frustrations with falling asleep.

Because now I can project the minimum amount of time I need to stay asleep while the house is quiet.
Read 9 tweets
A6.
โœ… Legalize private consumption of marijuana for 21 and up, Nationwide.
โœ… End opioid restrictions for #chronicpain, surgical & cancer patients

#MedTraumaChat
A6.
โœ… Cover supplemental pain remedies - from heating pads to gels, it's expensive.
โœ… Make disability approval automatic & move the bureaucracy to investigation of fraud instead of approval.

#MedTraumaChat
We subsidize corporate welfare with every paycheck.

The least big business can do is match the taxes going toward disability & food scarcity benefits.

#MedTraumaChat
Read 3 tweets
#Disability twitter, #medtwitter , let us have a discussion about patients discussing #MedicalTrauma on here. A Thread:
#chronicillness #ChronicPain #Chroniclife #MedTraumaChat #Spoonie
2) Last night, a fellow advocate posted a very handy guide for HCPs & patients abt treating patients who are trauma survivors: Trauma Informed Care - Disclosures and Care Transitions healthasahumanright.wordpress.com/2018/08/23/traโ€ฆ #medtwitter #Disability #chronicillness #medtraumachat #spoonie
3) It's a good resource for both #patients & HCPs, please read it if you have a moment.
This led to a helpful discussion about #MedicalTrauma between an HPC and the person who wrote this guide, who has had experiences with this,
#Disability #medtwitter #chronicillness #Spoonie
Read 13 tweets
I signed this petition. I never sign online petitions. But #Afflicted cannot be allowed to stand. chn.ge/2LcFWGj via @Change
Documentaries are meant to give a view of a subject or topic on a FACTUAL basis. Their opinion isn't supposed to be centered unless the subject is themselves.
#Afflicted is heavily slanted toward the erroneous assumption that the chronically ill patients are

faking,

have psychological illnesses rather than physical diseases,

or somehow in denial.

And I ask you- to what end?
Read 13 tweets
It hasn't been that bad since I lived alone. #MySpoons are in low key agony. But sharing is distraction.

& Hopefully this helps someone.
This morning when I woke up, things were already off.

โœ…I had MENSTRUAL cramps.

โœ…I still have some flu thing.

โœ…I overdid it yesterday helping with the kids.

โœ…My food schedule was off, so

โœ…My pill schedule was off.

Incoming nightmare amirite?
I thought I was prepared by the amount of pain I'd be in. So I

โžก๏ธdid the system check,
โžก๏ธgot up to visit my poreclean throne,
โžก๏ธchecked the kids were on schedule,
โžก๏ธhad one warm me a bagel and
โžก๏ธgot back in bed.
Read 19 tweets
This is an important point about Oxy.

#ChronicPain #CPP individuals aren't in perpetual pain. It's that they're so addicted to Oxy that withdrawal is unbearable.

In many people, the physical pain disappears long before they realize they're addicted.
heroin.palmbeachpost.com/purdue-pharma-โ€ฆ
It's kind of weird to me to read this article, with interviews with physicians who seem to have not thought rationally about prescribing a drug that is pure opiate.

Think about it - a single oxy is as powerful as FOURTEEN Percocet.

That much Percocet can kill you.
Oxycodone - and other opiate painkillers - when compounded with other drugs (particularly non-opiate painkillers, like acetaminophen and ibuprofen), can easily kill you if you take enough to get the high you get from a single Oxy.

That much acetaminophen can kill you.
Read 6 tweets
Having the #spooniechat community on Twitter helps me find resources and tips for my chronic illness in a way I don't get from doctors.
Doctors and non-spoonie friends suggest things, meaning well, that aren't practical, attainable or helpful.

But other people who have my symptoms or disease have field-tested answers.
#spooniechat
It may be hard to understand if you've never been house-bound or bed-bound from #chronicpain or #fatigue.

You don't have the error ofmsrgin for experimentation.
Read 3 tweets
25 years ago when my #chronicpain issues were first diagnosed, I was sent back to college in a wheelchair.

#AmbulatoryWheelchairUsersExist
I could walk (with intense pain) so I stopped using it due to the pressure if people who didn't need one.

#AmbulatoryWheelchairUsersExist
Biggest mistake of my life. I could have avoided so much suffering and pain and loss of quality of life. I'll never know for sure if I'd be better today having used one.

#AmbulatoryWheelchairUsersExist
Read 8 tweets
@Delta Don't treat me like cargo.

In fact, cargo is treated better than I have been. In my last 3 flights, at least once at every stop, I have been overlooked by wheelchair assistance. At least once at every stop I have had to request a wheelchair attendant more than once.
At least once at every stop I have had to combine the luck of having a delta employee in shouting distance with that employee not being busy with other things in order to be able to move about the gate, whether to get food, drink water, or use the restroom. It is dehumanizing.
At least with my bags, I can find out where my bag is, looking in the app. With your accessibility services, I have gotten used to the cadence of how employees call for a wheelchair attendant, because it has to happen multiple times.
Read 18 tweets
A3. My incidents usually revolve around being in #chronicpain. There's no vacation from it even when you go on vacation.

When I could get the proper medication for it, as recently as 2014, I had a thriving career, a business I owned 20 years, another for 11. #medtraumachat
A3. In contrast, now? On a special short term treatment my first FULL day of work since then was yesterday. And the temporary reprieve is almost up. #medtraumachat
A3. This is purely due to denial of medication. It's not even opioids - the one I need is one of the mildest medicines you can take, an opioid cousin. #medtraumachat
Read 3 tweets
I can... Do things. #spoonielife #myspoons

(That's a GIF of ladies dancing in a studio with the caption Namaste.)
So I went to this place for an same-day urgent consult.

They gave me the pain meds I was out of - Celebrex & Gabapentin. Then they gave me a shot for my new pain and a steroid.

I feel... Brand new. ๐Ÿฃ

(That's an emoji of a chick still an egg.)
I take that back.

I feel like me.
Read 29 tweets
I have just discovered that #Oregon is proposing changes to the state #opioid policy for #chronicpain patients on #medicaid.
I am incensed and I don't even live in Oregon. So let's break this down. #disability #opioidhysteria #spoonies #painpatients #opioidepidemic
Buckle up.
To summarize:
-Oregon's Health Evidence Review Commission and Value-based Benefits Subcommittee (HERC and VbBS) are proposing changes to Medicaid
-The changes intend to discontinue long term opioids for chronic pain patients
Read 41 tweets
It took How Great Thou Art, Formation & Sorry to get back out of bed.

Pray for me.
Nothing you want to hear more at the doctor's office than no room to sit down and wait for the doctor.
That was maybe my best urgent care appointment ever. They're giving me a shot for my pain. #ChronicPain
Read 6 tweets
On #myspoons today I want to talk about other people's expectations & ableism about your symptoms.
The ones that plague me the most are #fatigue & #chronicpain. I went from writing 1800 words an hour, up to 4x daily?
To falling asleep while writing a single tweet. & Still needing at least 5 minutes of rest after sometimes.
Read 19 tweets
We need to sue. At this point #chronicpain patients need a class action suit.

Sue the @CDCgov
Sue the Asterisk Administration
Sue Congress
Sue doctors who won't treat our pain.
Sue every state that hasn't legalized the sale of medical marijuana.
And where are the greedy ass pharma companies on this issue?

Why are none of the manufacturers of the medicine we need reaching out in support of our activists?
This is state-sanctioned torture. And I'm fucking fed up.
Read 4 tweets
This is a great suggestion.
Part of the reason I save my threads is to put them in a format I can turn into blog posts or essays etc.

My problem of course is being a #spoonie with #fatigue issues.
If you have an #chronicillness with chronic fatigue and/or #chronicpain that saps your energy & you're an author...
Read 7 tweets
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