Discover and read the best of Twitter Threads about #CRPS

Most recents (15)

Anons please consider a dig on the benefits of #Kratom and helping.
FDA has tried to ban it and are apparently targeting it again!
Why? Because #BigPharma can't patent it and profit.
Kratom users desperately need help going up against the smears.
Benefits of #kratom
The FDA, and Scott Gotlieb went after it hard in 2016 sending users underground. They banned groups on FB.
They don't profit off of this amazing plant so it's under attack again.…
Read 18 tweets
Today I was working with someone who is suffering with CRPS.

It was our first session after the assessment, so setting the scene by helping them understand their pain and symptoms.

IMO, the key first step to allay fears and worries about the causes.

I explained that it was not the body part that was in pain, but they, the person.

Much like it’s not the stomach that is hungry, the person is.

In others words, pain is whole person (in an context/environment) and cannot be reduced to anything less.

We talked about the fact that the biology involved with pain is largely not where you feel the pain.

Certainly involves the neuroimmune and endocrine ensemble. Most of that is not where the pain is felt.

Read 7 tweets
I WISH that I had good news to share with you all but sadly I don't. The #palliativecare doctor said he only treats end of life or #cancer pain & I am once again thrown back in the water like nasty stinky unwanted chum.
He said that I shouldn't be removed off Rx #opioids & in his opinion the the forced wean is too aggressive. I happened to have a horrible #crps attack so he got to literally see what that looks like. It's not pretty.
WHY are patients forced to go through this much shit in order to get basic care? I 100% feel discriminated against & it isn't ok. He did say that he was going to call my doctor tomorrow & speak to them directly to see if he can convince them to keep me on or adjust my meds.
Read 13 tweets
#PainSpeaking Thread -Suicidal Pain

Living with #CRPS isn't easy. We all need to have a good support system to survive this wicked beast. I wrote this several years ago after reading a post on Facebook about Suicidal Pain.

I am normally a very private person. And, if anyone
2) had told me that I would have shared this narrative with anyone. Much less that I would have posted it on a public forum like Twitter before I wrote it, I would have told them they were Nuckin' Futz.

But, CRPS/RSD changes us all. And, when I read the post on Suicidal Pain.
3) I felt compelled to share this narrative.

We live with the "Suicide Disease" every day and the only way to survive it is to support one another & help each other keep it together & not slip off the slippery slope that CRPS/RSD, untreated & undertreated pain seems to like to
Read 20 tweets
1) World With Complex Regional Pain Syndrome
(CRPS) As My Constant Companion

I live in a world with Complex Regional Pain Syndrome (CRPS) as my constant companion. Physicians don’t know why it develops, but #CRPS is a nerve disorder that
2)usually occurs after a traumatic injury, surgery, sprain, fracture, infection or a period of immobilization. CRPS/RSD is said to be the most painful chronic disease that’s known today. On the McGill #Pain Index it (Causalgia) scores 42 out of 50.
3)How does that compare to other types of pain and/or chronic pain conditions? #Arthritis pain is ranked about 18, Non-terminal Cancer pain at 24 and Chronic Back Pain is at 26. Natural labor and delivery of a 1st child is about 35. With a score of 40, the pain associated
Read 31 tweets
#chronicillness - a thread
Imagine being 12. A preteen in between 7th and 8th grade. The lower back pain started as a dull annoyance, then a constant vice tightening on my lower half. I was written off as "growing pains." Meanwhile I'm literally crawling to the bathroom so I can
Take a 4 hour scorching hot bath. Daily. ER says constipation sends me home. 2 days later I'm back at the ER in a wheel chair. My uterus almost ruptured because I was written off as over exaggerating. I had to have emergency surgery TERRIFIED AND 12 YEARS OLD. Fast forward 19
Years later.
The list goes on.

In walks #COVID19
My immune system is already screwed so #selfisolation here I come. Nearly everyone in my close family is high risk. I put off appts
Read 5 tweets
Thank you to @BethDarnall for speaking at #Minnesota @MinnesotaDHS #Opioid Work Group mtg on Thursday: Spoke of importance of #patientcenteredcare, #patientconsent necessary if taper & strongly advised AGAINST force tapers & using pre-determined MME'S. #ChronicPain #NoOneSize
MN #opioid Work Group created Taper Guidance. It will be out 4 public comment soon. Some areas extremely problematic. Although it states NOT 2 taper solely 2 meet system or state policy; MN Quality Improvement requires Drs 2 meet MME thresholds = TAPER TO MEET STATE POLICY. 🤔
If #ChronicPain pt wants 2 try 2 taper from #opioid analgesics 4 any reason & CONSENTS, there needs 2 be safe way 2 do it. Problem throughout U.S, incl #Minnesota; is non-consensual tapering. Many experts, incl #addiction specialists, stress dangers & even state it's UNETHICAL.
Read 11 tweets
Very pleased to share my first research paper in collaboration with Dr Karin Petrini, my @BathPsychology colleague. Free to download to the first 50 people if yo use this link (which doesn't work on chrome for some reason)
One theory is that some conditions of unexplained pain happen because of conflict between sensory signals received in the brain and signals for movement or intended movement that are generated in the brain.
This 'sensorimotor incongruence' theory is supported by evidence that when you use illusions to induce this kind of conflict, pain increases. In fact, even people without chronic pain report unusual sensations when they are exposed to this kind of illusion.
Read 14 tweets
So excited for the #NtlMtg20 to kick-off!!!

Ready to hear from @NASPADavid, Aimee, Courtney & so many other amazing people in our field!
Really awesome that @hecaod has Closed Captioning & an ASL interpreter on screen! #NtlMtg20 Image
And it's a GREAT time to say Happy 5th Year Anniversary to @hecaod!!! #NtlMtg20
Read 75 tweets
Morning peeps 😁 first day without a #wakeandbake time for a tolerance break 😱 wish me luck, gonna do at least 72 hours & then see if I can go any longer 🤞💚🌿🖖 Image
Update on my cannabis tolerance break, having slight issues with muscle spasms/dystonia in my foot 😭
Morning peeps 😁

Day two without a #wakeandbake 😁 Didn’t sleep as well as usual but at least I’ve stopped being sick, couldn’t even keep water down from about 5pm last night 🤢🤮 Still taking my CBD paste though, better safe than sorry #COVIDー19 #COVID19 #cytokinestorm 💚🌿🖖 Image
Read 15 tweets
The #HPVvaccine does not cause serious neurological harms (specifically #POTS and #CRPS ). My children will most certainly get the #vaccine , I encourage everyone with children to ensure they’re protected.
Peter Gøtzsche has made outrageous claims about the #HPV vaccine.
Gøtzsche claimed the data he relied upon was in a PhD he supervised.
The PhD made no such claim; even when the protocol was modified to include a “post hoc exploratory harms analysis”; with help from Louise Brinth.
Even then it didn’t show serious neurological harms.
This paper looked at the VAERS data (Dec 2014 -Dec 2017):
“We identified 1 report of a possible case of CRPS..”
~28 million doses given.:…
Read 6 tweets
“Hip” is socket (acetabulum) where femur (upper leg bone) inserts into pelvis (ilium/ischium). If hip were to dislocate, person would have excruciating pain & be unable to stand/walk. Sacroiliac joint (SIJ) is 17 cm square in area; vs. ilium & sacrum/coccyx (tail bone)....
SIJ commonly subluxes in pwHSD, generating painful ligament stretch interpreted as low back/hip pain in 13-30% pwLow Back Pain. When SIJ subluxes, Ilium rotates CW or CCW around a virtual transverse axis from Right to Left & through both mid-SIJs ....
Rotation of Ilium relative to Sacrum creates an oblique relationship of contours of the two bones. In a lean person, & depending on whether there is a CW or CCW rotation, the tail bone can appear to become stationed closer to the hip region on that side....
Read 15 tweets
How to make cannabis coconut oil capsules, a thread.
Start off with some cannabis coconut oil 🙄 empty capsules & a capsule filler machine
#IAmCannabis #illegallyalive #420suffragettes #CRPS #Fibromyalgia 💚🌿🖖
Put the empty capsules into the capsule filler & put the cannabis coconut oil in some boiling water to melt it.
Using a syringe, draw up the cannabis coconut oil & dispense into the capsules.
Read 5 tweets
First take a load of crappy auto weed you started on the windowsill & finished off while you were in prison, doesn’t look much but it’s not bad considering 🙄 also using this article on how to make cannabis coconut oil as they give different instructions…
Grind up the plant material in a mini blender. Put the coconut oil in the slow cooker & add the cannabis. Mix well, turn on low & then find something useful to do for 4-6 hours, volcano time 🙄😁 remembering to set a timer, just in case 🙄😂
Well, it’s had 4 hrs 30 & it’s been smelling lovely for ages now so I’ve turned the slow cooker off & I’m gonna just let it sit in that heat till it’s had 5 hrs. As a general rule when decarbing weed, when it smells good, it’s done! The oil looks quite green too, good sign 🤞
Read 7 tweets
Today is my 5 year anniversary on becoming disabled.

A thread.

I don't know exactly where I'm going with this. It's just my thoughts pouring out.
Short backstory, I guess?

On July 27th, 2014 I went in to have surgery on my left foot and ankle that already had major reconstructive surgery back in 2007.

Towards the end of this seven year period I was gradually losing the ability to walk/stand and needed a cane.
I was working as a cashier at CVS at the time (I was laid off from my web admin job) and needless to say, they were not happy with me using a cane and taking sick days.

They actively tried to force me to take a leave of absence and when I refused they then tried to get me fired.
Read 29 tweets

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