#amps

"That these programs are excruciating is the entire point. A tongue-in-cheek rule repeated by at least one pain program modeled after the one at CHOP instructs patients that they should never skip any activity unless they’re unconscious, have bones protruding, or have a fever of at least 102.8 degrees. (On their website, CHOP notes that participants should refrain from activities if they have a fever above 101 degrees.) A 2019 episode of NPR’s Invisibilia reported and hosted by Alix Spiegel follows one teen patient at a rehabilitation program at Children’s Mercy Hospital in Missouri as she has an asthma attack, then develops a nosebleed, then has an asthma attack, and finally vomits in a trash can while completing the program’s exercises. In reporting this story for Slate, I spoke to former patients who described an environment where they were surrounded by other teens crying and screaming in pain. It’s perhaps for this reason—the emotional intensity of the program—that phones go in a locked cabinet and parents are forbidden from seeing their kids throughout the day."

[...] [D]espite the promising numbers in the reports, the reality many of these patients experienced was much different. “I believed the fairy tale they told me,” said Isabel, a former patient of the AMPS program at CHOP. “Looking back, I know I just went through hell for nothing.”

As someone who went through one of these pain programs multiple times, it's wonderful to finally be seeing some fairly mainstream coverage on the damage they do. All I want is to see these programs condemned and shut down within my lifetime.

chickenheads

"It was Highway Knobbery, that's what it was."

1,2 1953 Ampro PA4

3. 1940 Maestro Broadcaster

4. Kiesel 3HGA suitcase amp

5. 822 Gullwing amp

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I made my own pain and fatigue scale charts. Because I'm so adept at overcoming my symptoms the normal pain scale doesn't really work for me. I adjusted my numbers so that I could change the number into something I could tell a doctor when they inevitably ask me to rate my pain.

[Image Description: Pain Scale Chart with rainbow gradient background for each row, starting at red and ending at blue.

Row 1: Mine Drs Pain Scale Description

Row 2: 10 X I am not leaving my bedroom or bathroom, someone needs to bring me food and I need something to dull the pain or the pain will cause tears.

Row 3: 9 X I am not leaving my bedroom and bathroom for anything other than food.

Row 4: 8 10 Speaking is difficult. It is no longer practical to do activities outside of the bathroom or bedroom, but they can be done with assistance.

Row 5: 7 9 Necessary care activities are sacrificed. Academic activities and social activities can no longer be tolerated.

Row 6: 6 8 My pain is tiring. Paying attention is difficult. All activities require pacing and extra effort.

Row 7: 5 7 My pain is so distracting it is making me tired. It is hard to think. Necessary care activities are no longer all doable.

Row 8: 4 6 My pain is so distracting it is making me tired. It is harder to think. Necessary care activities are starting to be limited.

Row 9: 3 5 I can continue to do most activities

Row 10: 2 4 My pain bothers me but I can ignore it most of the time

Row 11: 1 3 My pain bothers me, but I can ignore it most of the time.

Row 12: 0 2 I am aware of my pain only when I pay attention to it

Row 13: X 1 My pain is hardly noticeable

Row 14: X 0 I have no pain. END Image Description]

[Image Description:

Fatigue Scale Chart with rainbow gradient background for each row, starting at red and ending at blue.

Row 1: Mine Drs Fatigue Scale Description

Row 2: 10 X Can barely sit up, needs assistance to get out of bed. Holding conversations is impossible. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous.

Row 3: 9 X Able to walk and stand for short distances. Holding conversations is difficult. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous.

Row 4: 8 10 Able to walk and stand for short distances. Holding conversations is difficult. Sitting for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Preparing a meal isn’t possible.

Row 5: 7 9 Holding conversations is difficult. Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous.

Row 6: 6 8 Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is difficult. Preparing a meal is difficult.

Row 7: 5 7 Standing or walking for long periods is difficult. It is difficult to eat. Focusing is difficult.

Row 8: 4 6 Standing or walking for long periods is difficult. Focusing is difficult.

Row 9: 3 5 Cooking for longer than 15 minutes is extremely challenging.

Row 10: 2 4 Not everything can be done in the day. Activities are slowed down. Difficult mental challenges are sacrificed.

Row 11: 1 3 Tiredness makes it difficult to enjoy fun activities.

Row 12: 0 2 Things take more effort than usual, but everything is still doable.

Row 13: X 1 Slightly tired but still able to carry on as normal

Row 14: X 0 Not tired at all

END Image Description.]

Feel free to use them yourself if you like them!

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Edit p2:

So these charts I made them for showing people and using them to talk about my pain. The numbers are just sort of a reference point . The words are what's important. The fact that it is a relationship is what's significant.

I've got chronic pain and chronic fatigue. I'm never not in pain and I'm never not tired. These are based on the main pain and fatigue scales that I usually get shown at places that aren't specialized in treating pain or fatigue.

I use these when talking to my family, using the number that relates to the mine side. I use these with my non pain doctors who don't treat my pain or fatigue. I use the Drs number when talking to Drs. Anything that in those X spots is also 10. Drs don't like pain larger than 10 because they think you're faking it.

I made these after getting covid. It was about a year later and I still couldn't describe my pain in terms of the standard scale because I couldn't conceptualize pain properly because covid had completely broken my internal perception of pain intensity. Because I went from never having gone to 10/10 or ever being there for very long to about 2 weeks of what I could only describe as 13/10 pain. It was logarithmically higher than anything I my brain could process. And my brain didn't process it. I just sort of cried a lot, slowly.

If you are ever using a personalized pain scale or something you found online with a doctor you should show them what you're talking about. You need to make sure they understand you.

I posted this because I was having a hard time saying that while I was at a 3 in terms of abilities, I was in just as much pain as when I had been previously at a 5. I needed something that showed what I was talking about.

It feels very strange adding all these disclaimers so far after, but I've been thinking "it's too late" every time Ive realized someone might use it in a way that wouldn't help them. And then ignoring the problem for a while.

We've got 3k notes on this. People keep looking at it. The disclaimers are nessesary. I'm sorry they weren't there before.

I just remembered that I specifically made this because I needed to be able to point at a number and have my parents be able to know what that meant. They don't have training in the pain scale. They don't know what it means. But they do know what I mean now when I say I'm at a 6. They understand me.

The point is, this says that it's used for talking to doctors and it's really not. It's for my family mostly. And my PCP who keeps asking what pain I'm at and I just need to say a number that communicates the thing she wants to know (that's why the Drs thing is on there. That's the number she needs. She doesn't care. It's weird. She's weird.)

But it is mostly for my family. It's for describing how I'm doing.