How I Rate Various Pains With Multiple Rare Diseases

I don't remember what it's like not to be in pain. On a good day, I might say I'm "without pain." But honestly, I say that because I get tired of complaining, and it's frustrating to make a list. It often takes less time to list what doesn't hurt.

My whole body is in some sort of pain

When I see my physical medicine and rehabilitation doctor (PM&R), I'm always given a form to fill out. It's for "normal" patients: people who got injured skiing or something like that. You're supposed to "circle the joint that hurts" on a front and back drawing of the human body. As a teenager, I would've circled a knee or an ankle. Now, I circle the whole body, which became a running gag between my doctor and me!

Seriously, multiple parts of me always hurt, at least a little bit. But if I don't have an acute injury or an inflammatory flare-up, it's a good day, and I appreciate it!

It's hard to understand for someone who doesn't experience this and hard to explain as well. On the one hand, my description might make it seem worse than it is, and yet it can also seem like an exaggeration!

Tracking my pain with an app

One thing that helps me with this is a pain-tracking app. I use it mainly to track the 3 types of pain I live with:

• Joint pain caused by injuries, overuse, or hypermobile Ehlers-Danlos syndrome
• Neuropathic pain caused by small fiber neuropathy
• Inflammatory pain caused by systemic autoinflammatory disease

I don't always fill out all the data points in the app; it takes way too long to list all that hurts, but I at least try to input the intensity.

Looking at the graph or calendar view generated by my data inputs helps me visually understand how good or bad my pain has been, and it also helps because I can show it to people to help explain a bit better what it's like to be in pain every single day.

How to accurately describe your pain

I've always had difficulty describing and quantifying my various pains. Healthcare professionals often ask you to rate your pain on a 1-10 scale, which, if you're like me, is very difficult. What's a 3, what's an 8?

I know people in so much pain that they say, "It's a 12!"… which sadly usually works against you and doesn't help others understand your situation and might mean your "usual" 10 isn't the worst pain you ever felt.

Others feel a 10 must mean you're at death's door, something unimaginable, and will say they are at a 7 even though they're barely able to talk, which isn't helpful either.

Rating my pain from 0 to 10

Over the years, I found clear descriptions of pain levels based on the impact of the pain. I'm sharing my own version (which is not an official pain scale), hoping it helps others as much as it helped me:

• 0: No pain
• 1: Occasional minor twinges; doesn't bother you at all
• 2: Annoying, with occasional strong twinges
• 3: Enough pain to be distracting; pain can be ignored if you're focused on what you're doing; you can function
• 4: Pain can't be ignored for long; you can still function
• 5: Pain can't be ignored for more than a few minutes; you can do most activities with effort
• 6: Pain can't be ignored; pain limits what you can do and makes it hard to concentrate
• 7: Pain limits what you can do; it is difficult to focus or sleep
• 8: Pain severely limits activity; talking is difficult; feeling nauseous or dizzy.
• 9: Pain so severe that you can't talk or move; screaming or moaning, close to being delirious from pain
• 10: Pain so severe that it causes you to faint

With my pain scale definitions in mind, one can see how spending days at "just a 3" still can be pretty bothersome. I'm generally between a 2 and a 5 when my inflammation is better controlled. Otherwise, it's between a 5 and an 8. I experienced a 10 a few times (passing out due to pain). Level 9 pain doesn't happen as often as it used to, thankfully, but I'm way more familiar with it than I'd like.

Using this more descriptive list helped me understand I'd often used the "10" when I was truly at a 7 or 8, and it would've been enough! But I used to believe it took a 10 to be taken seriously, and, in truth, it's possible.

Not all healthcare professionals have the same scale in mind. This is why, if a doctor asks me to rate my pain, I always start by explaining that, to me, 0 is no pain, and I haven't experienced that since childhood, and 10 means I faint because the pain is so severe.

If able, I'll even add something like, "I'd say I'm at an 8 because having this conversation is very difficult, and I'm in so much pain that I feel nauseous and dizzy."

Learn to communicate effectively

The important part is to use a scale that works for you, that you can explain easily, and always use the same one. We can't get the right help if we can't communicate our reality!