#CRPS

[skys-archive]

The more I read about the "treatment" for amplified pain disorders and the guy who created it the more I think no this is fucking insane.

"Put them (usually children AROUND 12 YEARS OLD) in as much pain as possible through 6 hours of daily pt for up to 6 or more weeks"

"They do not talk about their pain or pain level at all, we only ask if the activity is easy, medium, or hard"

"Not everyone is a good fit for this program because it can further traumatize them"

"They cannot take pain medication or anything related like nausea medication during the treatment"

The guy who created it says that the invention of the pain scale has caused more people to develop chronic illnesses "because they're thinking more about pain" and by not thinking about it you will be cured.

Treatment for amplified pain disorders doesn't focus on treating the pain or making you feel less pain, it focuses on putting you in enough pain and desensitizing you (and almost surely traumatizing you) to the point that you just do everything through the pain.

And if you're teaching , again, CHILDREN that because the pain won't injure them they should just push through it even though supposedly it's one of the most painful disorders to have, what do you think is going to happen if they do get injured? If they get ulcers, or strain a muscle, or have chest pains because of a heart issue, or any other problem you can't obviously see? What are they supposed to just assume it's nothing?

And of course this isn't just children because adults have AMPS too they're just usually diagnosed with something more specific like fibromyalgia or CRPS, but this is especially horrible for children who's brains are growing and don't have the capacity to understand as much that this is wrong.

Why is your "treatment" to put usually children in as much pain as possible for up to months on end? So, what? That they essentially give up and assume they'll always have to push themselves far beyond their limits because, "it won't injure you", right? "It's just pain", right? Even though they're in excruciating pain?

Do you understand how unbelievably fucked that sounds?

[chronicillnessfromateensmind]

❤️🧡💛💚💙💜

[chiwosays]

shoutout to other disabled people with constant and debilitating pain, people whose pain can't fade into the background or be ignored throughout the day.

[wishful-seeker]

I now have:

A prescription for a new wheelchair

A prescription for an electric scooter attachment

And the money to buy the attachment even if insurance doesn't pay up

BODILY AUTONOMY HERE I COOOOME!

[alizardbro]

It's amazing how differently people treat you based on what mobility aid you're using. When I'm using my cane I get funny looks from people because I'm a young person and "do you really need that?". Almost nobody holds the door for for me and when I drop something almost nobody helps me pick it up.

When I'm using my forearm crutches people are a little nicer but not by much. I get less funny looks and more people hold the door for me, but still hardly anyone helps me pick up stuff I drop. And if I'm out alone shopping or something, nobody helps me reach stuff on high shelves unless I ask. I get not wanting to come off as ableist by offering to help, but if you see someone clearly struggling you might want to step in.

Now when I'm using my wheelchair, that's a whole different ballgame. Almost everyone is holding doors, helping me pick up stuff, helping me with high shelves, and being really nice to me. But people often infantilize me when I'm using a wheelchair. They always smile at me, which sounds nice, but it's usually in a way you would smile at a little kid out in public. If I'm with someone then people will talk to them instead of me, and if I'm alone people will talk slowly to me or in a high pitched voice.

It's literally not that hard to be normal around disabled people I just don't get it.

[mushroom-music]

I so hate when I’m masking my pain or just can’t explain the pain so I don’t say anything and then I have to take care of myself (ie. take a nap, refrain from too much activity, be in a quiet setting, take pain meds) and someone goes “well ya didn’t say anything abt ur pain!! that means ur fine :)” like NO it DOES NOT i am just DEEPLY AFRAID OF BEING A BURDEN so I shut up abt my suffering and just do what I need to do. Damn dude leave me alone.

[softgritspoonie]

[stagkingswife]

Sometimes the pain gets so bad, and none of the things that are supposed to help are helping enough, that there’s nothing left to do but yeet yourself from your body.

[pixelsandpain]

Oof me rn

[lalalychee]

hey i am desperately trying to get out of my job. the above conversation is a very common occurrence, just to give an example of why i need to get out for the sake of my mental health. i got cussed out within my first five minutes of clocking in this morning. i get called slurs all the time.

in addition to this, i am physically disabled with CRPS, which is considered to be literally the most painful chronic condition that we know of, and i have polyarthritis too. it makes working a traditional 9-5 extremely difficult. i am constantly in excruciating pain.

i have a bachelor's in drawing and painting, and i want to paint full-time. it's the only thing that is ever going to bring me peace. here are a few of the paintings i have done within the past year or so:

i have a patreon that costs only $2 a month for the lowest tier.

i'm a quarter of the way to being able to being able to make that my full-time thing. you don't even have to care about the things i post there. you can just throw $2 my way once a month and feel like you've done a good deed. it costs less than a cheeseburger at mcdonald's. if just a quarter of my followers subscribed at the base level, i would be at my goal.

please please please help me get out of my day job. i cannot do this anymore. i am desperate. i am literally in a mental health crisis over this job and i'm out of other options because of my disability. i am so not good.

[chronicillnessfromateensmind]

saw this and thought i’d share

*picture not mine*

[painedandconfusedsblog]

If I say I am in less pain than yesterday that does not mean I have it managed to where I can say I am feeling better. It is like managing a wildfire. I am documenting the percentage of its containment. I am documenting conditions of my environment and if I have resources to fight said fire.

And even if I tell you the fire is out out, that still does not mean I am better. I have been burned badly. There is a trail of destruction. And I am putting out fires daily.

[wishful-seeker]

"If you could wish for anything, would you wish to not be disabled anymore?"

I have crps, severe chronic pain in my entire body. Rated 42/50 on mcgills pain scale of suffering, which is rated higher than unmedicated amputation of a finger, unmedicated child birth, and cancer.

It took everything from me, went from really athletic person to a bedridden wheelchair user. I've never experienced anything more difficult.

But if i could wish for anything i don't know if i would wish to be cured. Its a tough decision. My disease is not fun, but it forced me to deal with my internal issues rather than distract myself with hobbies, work, or school. It was like being locked in a dark empty room for years with nothing but my mind, the only way to survive was to heal my mind. Now that I've done that i am happier than i ever was when i was abled. I have genuine peace and stability, and as someone with bipolar, anxiety, and ptsd, that achievement is huge.

I may not like what i deal with, but it made me who i am right now, it got me to this wonderful moment. I like who i am, and i like my story, and crps is a big part of it.

I think if i could wish for anything, I'd rather wish for America to become a palce where it prioritizes its people, their health, stability, and pursuit of happiness, rather than a place that is being ruined by billionaires. If we lived in a world like that, being disabled wouldn't be nearly as miserable. Free health care, financial stability, a home for everyone. Free education, more disabled accessibility, and financial aid that people could actually live off of without struggle. I wish we lived in a world like that. I don't wish to be abled again.

I want to live in a world where being disabled doesn't mean you have a horrible and difficult life.

Fellow disabled people, how do you feel about this?

[daisyprayers]

Ophelia is currently in the hospital for emergency surgery - a significant challenge for someone with CRPS, as surgery can trigger severe pain exacerbation. She will need support for post-surgery home care and a third round of ketamine treatments in NY once she's able to travel. Your generous support has been crucial in getting her this far, and we're deeply grateful. With funds severely depleted from previous treatments, we're reaching out for help once again. Can you help reassure her that we'll see her through this difficult time?

(written by my friend)

Please reblog if you can’t donate 🫶🏻

[thewanderingemporium]

Quick tip for new manual wheelchair users

Buy yourself a pair of weightlifting gloves and use them whenever you need to use your chair.

Because manual wheelchairs can really hurt your hands when you start out - these will give your hands some protection (speaking as a new ambulatory wheelchair user).

Sending spoonie hugs

[badxwolf]

“None of us know for sure what’s out there. That’s why we keep looking. Keep the faith. Travel hopefully. The universe will surprise you constantly.” - The Doctor

I don’t talk about it very often on this blog but I have a rare neuropathic condition called Complex Regional Pain Syndrome. It causes me constant, debilitating full-body pain along with a host of other symptoms that affect every aspect of my life.

I got sick when I was 9 years old. I am 25 now and over the years my condition has deteriorated. I’ve developed several comorbidities which in combination have become life threatening.

In 2021 I was admitted to hospice. I was only able to make it through with the support of my friends who found new treatment options and set up a fundraiser for me. I’m beginning another round of treatment soon and with your help I will be able to afford the care I need during this lengthy recovery process.

These last few years have been the hardest of my life, but also the most hopeful. This disease has taken so much from me but I refuse to give up. I know I have a future, I just need help getting there.

You can learn more about my story here:

TV Interview // Radio Interview

You can help by donating, reblogging this post and sharing my fundraiser. Every bit helps!!!

🌟 LINK TO MY FUNDRAISER! 🌟