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One of the defining characteristics of rheumatoid arthritis (RA) is pain. It can run the gamut from mild or temporary to severe and chronic, caused by active inflammation or damage to the joints, exacerbated by overdoing it or not moving at all. Living with unpredictable pain is incredibly difficult — because (obviously) it’s deeply uncomfortable, but also because it is invisible, it’s really hard to explain to others, including your family and medical team. Let me share my RA Pro Tip that you can use to help your rheumatologist understand your pain.

Finding a way to explain how you feel to your doctor is an essential part of fine-tuning your treatment so you can live a better life. You and your rheumatologist are a team, both bring unique expertise, information, and talents to your relationship. Creating a solution to your problem starts with the information you give the doctor. This is someone you see maybe 15 minutes every three months, some doing your homework is essential. The Talk over RA site has some great tips to help you break the silence about how it feels to have RA, including a discussion guide to help you prepare for your next appointment with your rheumatologist.

If your main issue is pain, thinking ahead to the conversation give you a better chance of helping your rheumatologist understand the impact of that pain. And first, we need to talk about the 10-point pain scale.

We all hate the 10-point pain scale, but there is a way to use it that can actually help your doctor understand your #rheumatoidarthritis pain.

We’ve all been there —telling a doctor about being in pain, their first question is inevitably “on a scale of 1 to 10, how bad is your pain?” The purpose of this question is to create a common understanding of your pain, but the reality is that it is more likely to create even more confusion. We all have different definitions of the numbers running from one through ten and if you’ve been overwhelmed by your pain for days or weeks, this scale can feel inadequate or dismissive.

Don’t give in to the temptation of replying that your pain is a 12, 42, or 109. Instead of this persuading the doctor at your side that you have really high pain, they are more likely to see it as an unnecessary exaggeration and may mentally minimize your report of pain. Always remember that doctors are humans, too.

The main problem with the 10-point pain scale is that it doesn’t come with an explanation of the individual numbers. When people have different kinds of pain, levels of pain tolerances, or experiences with pain, the numbers don’t actually have much meaning. To add to the confusion, your doctor will also define each number based on their experience — both personal and professional — and the chance of your definition matching theirs is slim to none.

So take a step back. Tell your doctor about your definition of the numbers in terms of the pain’s impact on your life and how would you rate the different levels of impact.

For instance, I will never state that my pain as a 10. Often described as “the worst pain you can imagine,” I see this as the kind of pain that renders you unconscious or a gibbering, screaming mess. I imagine that 3rd degree burns over most of your body would be a level 10 pain. Although I have experienced excruciating RA pain, it’s never been similar to that. As well, I’ve lived with chronic pain since I was a child and have developed some pretty effective filters to block out my awareness of the pain. That means I don’t really register it being present until it’s about a level 5 when it starts impacting my ability to get through my day.

My version of the kind of pain that needs my doctor’s help is usually a 7 and above — and yes, I do use the 0.5 spaces in between the whole numbers to fine-tune the definition. My explanation might go something like this:

5 — this is when I start taking pain medication and using my other pain management tricks, such as heat and ice, CBD oil, distraction, etc.

6 — daily tasks are difficult, even when I use all the tools mentioned in level 5. I need to reduce what I do and have more rest. The longer it lasts, the more it affects my mental health, causing frustration and depression.

7 — I need more help doing daily tasks, my ability to work is very affected, brain fog makes it hard to think, I am never comfortable or not in pain, pain medication only takes the edge off. Laughing is difficult, I’m sad and depressed.

8 — all of the above from 5 through 7. The pain is blinding, making me cry or pant or both.

9 — the most pain I can imagine that isn’t 3^rd degree burns. It would make me faint.

All of this is important information for my doctor to know. When they know that I have long-term experience with pain, a high pain tolerance, that I have a lot of pain management tools that I can use to control my pain, and exactly how each level of pain affects my ability to live my life, as well as my mental health, they can form a more accurate picture of how I feel. Which can help them help me.

Try writing down your own definitions of each number. If, like me, you are a pain veteran, it may look closer to my definitions. If you’re new to pain, you’ll likely include levels 1 through 4. With each number, make some notes on how you feel, both physically and emotionally, and whether you have the tools to deal with that level yourself.

If you haven’t developed your own personal set of coping tools yet, asking for help at an earlier stage is completely normal and acceptable. You are not a wimp for not knowing how to cope with your pain. You are not weak if you don’t have emotional resources to cope on your own. Those resources take time to develop and how much you have depends on what else is going on in your life. If you’re in a really good place, you’ll have more resources. If you’re very stressed, you’ll have less.

Asking for help before you’re at the end of your rope also gives your doctor time to find the solution. Any remedies they might prescribe can take a while to work. For instance, physiotherapy, a switch in medication, or a referral to a pain specialist may all take weeks to start having an effect. Give yourself a buffer zone.

Check out Talk over RA for more tips on talking to your doctor and others about your experience.

This post was made possible by a Talk Over RA partnership. All opinions are my own.