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Correct 3 to 5 “very distressing”
I agree! I always wonder if any chronic pain patients are at all involved in creating these scales, or if pain-free people create them according to what they *imagine* chronic pain would feel like if they had it.
My only hope as a chronic pain patient is that one day soon every advocate for taking these meds away from pain patients has a loved one close to them be afflicted with a condition requiring pain management!
If I had one “Super Power” it would be the ability to project my pain onto any Doctor who chooses to scoff at and dismiss the levels of pain that I am describing.
On the pain scale listed above, while likely the most accurate descriptor of pain to a pain-free individual, it is still not able to convey the psychological aspects of living with pain. To wit: level 3 (Tolerable) describes a “blow hard enough to cause a bloody nose” — well, that level of pain felt continuously for more than a few moments without relief, would cause 100% of humans to commit suicide. If you need proof, have your spouse hit you hard enough in the nose to cause a bloody nose, I guarantee you it will override whatever pain you currently are going through. Proof positive that your pain is not that high, if it were, you would not feel the blow to the nose. The thing about pain is it’s impossible to feel pain that is less, if you are feeling a pain level of 5 you cannot feel the 4 or lower even if it is inflicted on you, the level 5 overrides everything. Yet here 3 is described as “tolerable”. What makes it tolerable is the fact we know it will be over quickly. Now, pinching skin between your fingernails, would be tolerable for long periods of time, years. It would become annoying, and as time went on our attention would be focused more, and more, and more, on that little annoying pain until it became all we think about. Meaning in order to try and describe that to a pain-free person we have to elevate how much pain is there in an attempt to convey the discomfort. The reason pain free individuals, doctors or otherwise, can’t conceive of your discomfort is because they can’t conceive of living with ANY level of pain for long periods of time. As a chronic pain person you can’t remember a pain-free time. So even if you had your super power, the doctors would go well that’s not so bad, because all they could conceive of was the pain would go away shortly. All of this has been said, to tell you, and other people who complain of chronic pain that you are in fact just a bunch of babies who wish their days could be pain-free 100% of the time. Not possible, get over it, deal with it. No sympathy. I have lived with chronic back pain for 30+ years I go to work every day without drugs or complaint. It’s just part of being human and walking up right, there will be some degree of discomfort.
I agree that being human and walking upright will eventually lead to some “discomfort”, even in “normal” people, but that’s not what we’re generally talking about here. The pain from EDS goes so far beyond “discomfort” that the word is only an insult.
I’ve tried to convince my brain that my pain is just another sensory stimulus, like a firm touch or a hard bump, but something changes the sensation from “discomfort” to the agony of nociception. Pain is very different from other sensory input because only certain “painful” stimuli trigger the nociceptive nerves to signal pain to our brain.
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