The Pain of RA

Lately I’ve seen a lot of people talking about the pain of RA. How it’s unrelenting, unforgiving, and seemingly without end. I get it, I really do. There have been times when I was in pain on a level that most people have never felt, and that includes other RA patients, and I’ll never forget it. Pain is one of the first lessons we RA’ers learn.

Why does RA cause so much pain?

Before we begin, let’s just recap quickly why RA causes us such pain. RA, as you probably know, causes the body’s own immune system to attack the cartilage and bones of the joints. This causes inflammation, which, in turn, causes discomfort, swelling, and, of course, pain. 

Damage to joint and soft connective tissue

The instant pain caused is considerable, but over time, joints can be damaged and that’s an entirely different level of pain. Sometimes the damage is so painful that it requires a joint replacement. Jagged bone rubbing against jagged bone is just as bad as it sounds.

The difficulty in describing RA pain

The question I get asked more than anything else is “What does RA feel like?”  How do you describe RA pain? If you use the clinical method it means giving a number from 1 to 10 and providing an adjective to go with it. So if someone asked you how was your pain, you’d say, "Oh, it’s a 7 out of 10 and it’s aching." Now the problems with this method I’m sure are already evident but, just in case, let’s go over it. 

Difference in pain tolerance

First of all, everyone and I mean everyone, feels pain differently. Someone’s 7 is another person’s 3. Another person’s 4 is someone else’s “Dear God I’m going to kill everyone in this room if you don’t get me some pain meds.” It’s unreliable, like measuring shoe size in the number of Twizzlers. The adjectives are slightly less useless, like popping or stinging or burning. But the reality is it doesn’t matter what the pain feels like, it just hurts.  So the clinical method is out.

How I try to describe RA pain

The only way I’ve ever found to describe the pain of RA is as follows: I first ask people if they’ve ever sprained a joint or wrenched a thumb. Then I say it’s like two days after the sprain when it’s really at it’s worst, but in random joints all over your body, and the pain feels like it’s slowly leaking out of your joints and poisoning the rest of your body. If the person has never sprained anything, then I tell them I feel sorry for their life of no fun.  Either way, it’s a crude facsimile for those of us who have RA, but for anyone who doesn’t, I think it’s the best we’re ever going to be able to do.

RA pain management options

Pain management with medication

So, now that we know how it feels, what do we do about the pain? There are several options. The first is, obviously, pain management. It has worked wonders for many people I know, but others are wary, and I get it. The media has made it seem like as soon as you take one pill of Oxycodone, you’ll be auctioning your children off on the Dark Net to get a few more hits of sweet lady Ox, as they call it (nobody calls it that). I am here to tell you that pain meds are just like any other medicine – if used correctly with a reputable doctor they do work. Also, you won’t end up trading your shoes for pills in that shady alley behind the discount store.

Mindfulness methods

Of course, you don’t always have access to pain meds or have pain so bad that the pain meds you do have aren’t doing the job. That has happened to me so many times that I had to discover a way to deal with the pain that didn’t involve medication. Or cutting off my own limbs. After years of trying to have a life with RA, I learned how to “turn off” the pain. Now, I use quotes because it’s not like I can flip a switch in my brain and be out of pain like those Buddhist monks who can stick needles into their faces like a human pincushion. It’s more akin to transforming some of the pain into something else.

What is that something else? It’s extremely difficult to describe, but I’d liken it more to pressure than pain. The difference is subtle, but it’s enough. I just close my eyes and envision the pain as it’s traveling up my leg or arm, and I close off that part, like damming a river. I know, it sounds more hippie than a vegan buffet at a naked tree painting class, but I promise, it works. It took me years to be able to do it reliably, but it really does work. It might be worth trying for those of you who can’t get relief otherwise.

Joint replacement

Finally, if you are in a position where your pain comes from joints that have no more cartilage left, then you might consider surgery for joint replacement. Hips are a good candidate, as are knees.  Ankles and wrists are less common, and I believe they even have artificial finger joints. Back, neck, and anything else, you are unfortunately out of luck at this time. Unless you want to put your brain into a robot. I think we can do that now. Or was that on Netflix? Whatever. Talk to your doctor too, and don’t be afraid to tell him or her that the regimen isn’t working and you are still in pain. Be insistent if you have to, and find a solution or as close to one as possible.

Pain is one of the worst aspects of RA, and it isn’t something we can easily tell people about other than to say “I’m in pain.”  After a while, unfortunately, people get tired of hearing it when they ask “what’s wrong?” even if they don’t mean to.  Pain can be isolating, create depression, and lead to a whole slew of mental issues along with the physical ones.  So those of you who are caretakers, please read this and keep it in mind, and those of you who are suffering, well, I’m right there with you. Talk soon.

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