Discover and read the best of Twitter Threads about #ChronicPain

Most recents (24)

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…
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"…
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…
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.


These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

Read 45 tweets
76 yr old Mom needs help…
In 2011 I was bitten by a tick. I have a brain tumor/IIH & such severe intestinal damage that I CANNOT digest food w/out enteral food RX. It's $198/wk, even w/pharma discount. My (now) 77-year-old Mom is my caregiver but she can't afford it. Don't have enough to eat/save 🏡. 😭
I contracted E
Chaffeensis, Rickettsia of unknown etiology, & #LymeDisease. I just had 8th spinal tap to relieve pressure on my brain.
I'd been on antibiotics for 19 yrs.
I caught Coxsackie B4 virus-a cousin of polio. Lost most use of (L) side.
I wasn't treated for 11 mos. #Lyme
Read 17 tweets

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…
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!…
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…
Read 10 tweets
Pain lies
Pain lies under my skin
A strand of fingernail
Dead tissue
Pierced my sleep.
Better than Yesterday’s Pain.
As bad as Today’s.
Dear Doc,
If you ask me
How bad it is now
And my eyes roll around
Inside such a sound
Hell raining on a firestorm
Devil’s Cauldron burning
A Dragon biting my ankles,
Pain is my Shackles
“Not bad”
I will say.
Dear Doctor, Nurse and @MediaTJC
Forget the Number
My pain has None
My pain Not None
More than 10
Off your Scale
Manufactured by Morons
I said that
Pain has Color
Mine is Red.
Read 4 tweets
To the extent that emotional pain causes stress which heightens my pain? Ok.

With you.

It's that next left.
You know the one where they say "your six chronic illnesses and cancer cause all your #ChronicPain because mind-body connection and yoga meditations positivity mindfulness law of attraction" I will hurt your life.
Read 10 tweets
The part in this article about the opioid crisis was more accurate for when it was written. BUT.
The data behind the opioid issue is very flawed. And it has been since 2004, though it is less flawed now.

The CDC admitted the recent data was wrong last April. Yet even surgical & cancer patients can't get mild pain killers.
I do like the part exposing the data behind crack babies. Someone needs to take that model and do the investigative part for the opioid hysteria.
Read 23 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.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

Read 29 tweets
A6. Twitter, despite some people's belief that #ChronicPain can be cured by ridiculous things, is a wonderful place to find and participate in community. #LupusChat
A6. Some favorite hashtags and Twitter chats, then I'll leave a link to the last time I updated my list.


#LupusChat of course
Read 3 tweets
Kind of amazing how the right dose of antidepressants can help you get back in the swing of things.

I should have done this years ago.
Actually I did back in the 90s. The pain management team I had included a chiropractor.

He told the doctor to add an antidepressant to my pain pills. I had to stop taking it due to the expense.
Thanks to my sister I got back on them. I'm hitting the four week mark of taking them consistently.

And this is the longest stretch of work I've been able to do.
Read 6 tweets
76 yr old Mom needs help…
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
5 Life-Enhancing Benefits of Strength Training for Adults Over 55 🏋🏽‍♀️

Strength training and regular aerobic activity help prevent many chronic and degenerative diseases related to #aging.

Here are 5 #health benefits that strength training can provide to older adults...

1. Stronger Muscles

Stronger muscles protect the joints of the body. Muscle weakness can cause the hips, spine, and shoulder to be less stable and more prone to injury.

A stronger body can withstand the #stress of daily activities.

2. Chronic Pain Relief

Many #chronicpain issues are a result of muscle weakness and muscle imbalances.

Strength exercises can correct these imbalances to restore the function and integrity of the joints.
Read 7 tweets
So my experience that went wrong today was sit upright in a reclining chair for 5 hours.

Now? Such a huge spike in pain that I had to go lay in my bed.
#MySpoons are doing the angry dance. Extra dose of barely-helpful meds to the....

What’s is it called when something doesn’t help but might prevent a situation from getting worse?

To the that. I can’t even say “rescue.”
The worst pain is at the back of my legs. What interesting thing can I do laying in my stomach without a partner?

I’m tired of reading, podcasts, tv, music. I want to write.
Read 7 tweets
The sick part is that many of us being denied effective pain medication, to the extent that we can no longer work, don’t want or seek the high dose that is often referenced.
Today #myspoons were so fully depleted that after hours trying to recover, I still can’t fall asleep.

Too much pain.
I’m pretty good with words. Not to toot my own horn but I’ve been winning awards for it since grade school.

I mention that not only to brag.
Read 17 tweets
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
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 haven’t been able to—cannot wait to talk to my therapist about it.

I’ve had #chronicpain for ~15 years now (I’m 30), and I was just diagnosed with Crohn’s disease last Friday.
Up until recently, I’d push myself beyond the pain—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 can’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

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

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