Discover and read the best of Twitter Threads about #chronicPain

Most recents (24)

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

Read 16 tweets
If Harvard is willing to publish unresearched #chronicpain articles with at least 4 errors, what hope is there for patients?…
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!]
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
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
✅ Legalize private consumption of marijuana for 21 and up, Nationwide.
✅ End opioid restrictions for #chronicpain, surgical & cancer patients

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

We subsidize corporate welfare with every paycheck.

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

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… #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. 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


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.

✅I had MENSTRUAL cramps.

✅I still have some flu thing.

✅I overdid it yesterday helping with the kids.

✅My food schedule was off, so

✅My pill schedule was off.

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

➡️did the system check,
➡️got up to visit my poreclean throne,
➡️checked the kids were on schedule,
➡️had one warm me a bagel and
➡️got back in bed.
Read 19 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.
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.

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

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.

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. 🐣

(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.
CW: ableism, bullshit, suicide, swearing
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
Today #myspoons are exhausting but improving.

My mood isn't great but I may have solved the dilemma of changing my #spoonie walking regimen.
Be it so resolved- doctor's orders currently over rule my mother: I cannot walk every day, that is madness.
Not even Naomi strut on walkway speed. Issa no.
Read 12 tweets
All day long it has felt like someone is pulling a huge pin through my left hip into my right hip & back out the other side.

Just 1 of several fun issues. #ChronicPain
I thought moving around more might help. Just made me have to walk like Frankenstein’s monster. 👍🏽 #sexy #bonepain
I need to know other humans felt like this and woke up the next day. Spoonie fam? Give me hope?
Read 4 tweets
Some people are curious how not having my full course of meds keeps me from working full time.

This is where I'll start the story of #myspoons today.
Not that I owe them shit. But maybe you or a #spoonie squad member of ours might find it relevant or helpful.
So in a nutshell, the less pain I'm in? The more I can do.

"But Tinu" some y'all say, "If your work is mostly digital, aren't you good as long as you have a laptop & a computer connection?"

Haha nawl!
Read 22 tweets
🐰 #chronicPain self care suggestions 🐰
🐰 give yourself 30 minutes with your TENS machine. if it takes longer, that's perfect too.
🐰 take a hot shower or bath. really hot (or cool if you prefer). really long. no scrubbing. just enjoy.
Read 22 tweets
I wonder who even listens or cares when I post about #ChronicPain outside the #spoinie and disabled community.

I really do.
Of course I know why I do it.

I'm trying to humanize people whose #ChronicDisease may not be apparent.

It's sad that humans don't naturally want to save an abstract life.
I know that hearing other people's story extends the life of #myspoons. So I share mine in hopes of doing the same for others.

And to be a part of #shareourpain & lots of other reasons.
Read 25 tweets
The amount of added pain I get when I go downstairs & heat up dinner so I can take meds...

Meds I can't take on an empty stomach. That cause weight gain. #Fibro
But if I wait, the timing of other meds will be off. So will my sleep. Weeks of cascading errors. #chronicpain
The agony is exhausting to the point that I'm not only no longer hungry, I'm nauseated.

By the time I recover my food will be cold as usual.

Read 6 tweets

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