The Pain Of RA

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.

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.  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.

How do you describe how RA pain feels like?

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.  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 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.

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.

How to manage RA pain?

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.

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 for managing RA pain

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (17)
  • Casmere
    2 weeks ago

    Danielle, I have tried three times to comment on your post I keep losing my comments. I enjoyed your article very much. It is so true for all of us and having a scale of 1 to 10 for pain is ludicrous. You have a way of putting levity into a serious subject. I originally was going to write more but as this is my third time I’m going to try to keep it short. I wish you all the very best in your upcoming surgeries and that they turn out the way they are supposed to. I live in Ontario Canada so most surgeries are covered under Ohip. There are other extras that things on top that is good for us to have extra insurane. Like a private or semi private room. Plus braces rollatirs and such. It goes on an on.

    Anyway all my best to you and everone

  • 1o2vvs3
    2 weeks ago

    Daniel, Thank you for your article. I appreciate how you wrote about the good the bad and the tolerable. Maybe I expect too much from my meds and treatment. I want something to fix the real problem, the thing that is causing the inflammation. If I didn’t have the disease I wouldn’t have the pain. Doctor says its like a trial and error to find what works for me. Pain meds are not an alternative for me in my mind. I like your mind over pain idea. That probably also alleviates some stress, which helps over all. Getting healthy with exercise, food and doing what I can to make my RA is my goal. Thank you again for your helpfulness and willingness to share your story.

  • Daniel Malito moderator author
    2 weeks ago

    @1o2vvs3 Thanks so much for readgin, I’m happy that you found it helpful. I wihs you the best of luck in your goal to get healthy with exercise. It’s something I also am trying to do. Keep on keepin’ on, DPM

  • heide
    3 weeks ago

    I have had the knuckles in both hands replaced…no more pain. Nodules on my feet removed, more than once.

  • Daniel Malito moderator author
    3 weeks ago

    @heide I probably will have to do that at some point. First I have to fix this stupid ankle, though. I have so many surgeries lined up that after two more I get a free appendix out. Thanks for reading, keep on keepin’ on, DPM

  • CynthiaV
    3 weeks ago

    What a perfect post. You made me cry but you also made me laugh. Best of all you made me feel less alone. Thank you.

  • Daniel Malito moderator author
    3 weeks ago

    @cynthiav Sorry for the crying, happy for the laughter. Unless it was good crying, then great! Ha ha. You have no idea how much it means to me that I made you feel less alone. That’s worth more to me than all the gold in the world. Thanks for reading. Keep on keepin’ on, DPM

  • CynthiaV
    3 weeks ago

    You too DPM…Just keep gettin’ up every day. Glad I could make your day as you made mine. And the tears were kinda in the middle. Sad bc we are too familiar with pain and happy that there is a place we can gather to talk about it and learn from one another. Be well…

  • vhanson
    3 weeks ago

    Can you explain more about ‘turning off’ the pain? Do you use meditation? Thanks

  • Daniel Malito moderator author
    3 weeks ago

    @vhanson I can try. It’s so difficult to explain and it took me years to figure out. Yes, it’s like meditation, but I visualize whatever part of the body is hurting like I’m blocking the river of nerves going to my brain. It doesn’t necessarily stop the pain but it changes it into something less than pain but still uncomfortable. The thing is, I can do uncomfortable all day long. I’m sorry I can’t explain it better, but starting with meditation is where I started. I hope that helps. Thanks for reading, keep on keepin’ on, DPM

  • vhanson
    3 weeks ago

    Thanks, Daniel.

  • kayjaybee13
    3 weeks ago

    In regards to RA I’ve found, for myself, that question requires a different answer. When asked I base my reply on what is inflamed, what is stiff, how many joints are affected at the time the question is posed and truthfully how much it is affecting my daily activity. As stated everyone’s tolerance to pain is different. Ra is not only about pain but how the disease affects you overall.

  • Daniel Malito moderator author
    3 weeks ago

    @kayjaybee13 That’s certainly true. You can feel like crap overall but nothing specifically hurts badly. It’s a shell game and that’s part of the reason it’s so difficult to put into words. Thanks for reading, keep on keepin’ on, DPM

  • Victoria
    3 weeks ago

    Yes, pain is so subjective and difficult to describe, particularly chronic pain. So exhausting! when my body is ‘screaming’! Using the 1to 10 scale is ineffective. I’ve used the analogy as if you’re wearing jeans many sizes too small, knees and ankles are under so much pressure from the inside out, heat , prickly burning and movement so limited.

  • Daniel Malito moderator author
    3 weeks ago

    @victoria That’s a great analogy for your pain, I’m glad you found a way to put it into words. My pain is less of a pressure and more of a dull ache, so, again, we are all so different it’s not even as if one descriptor will work for us all. Another reason why it’s so hard to put into words. Keep on keepin’ on DPM

  • Lawrence 'rick' Phillips
    3 weeks ago

    Oh, I am so fortunate to have an artificial hip. It was amazing how much the pain was debilitating. It was not easy getting to the end but now seven years later I am so glad I had it done.

    I suggest it to anyone with ongoing hip pain who have a doctors recommendation to have a replacement.

  • Richard Faust moderator
    3 weeks ago

    Hey Rick, just to expound on what you said about the benefits of joint replacements. My wife Kelly had her bilateral knee and hip replacements back in what could be called the horse and buggy days for those procedures and still says “If I were in those shoes now, I would definitely do it all over again:” https://rheumatoidarthritis.net/living/call-me-the-bionic-woman/. Also, it should be noted, as Carla does in this article, that contrary to earlier belief, joint replacements have been found to be as effective for those with RA as OA: https://rheumatoidarthritis.net/living/joint-replacement/. Best, Richard (RheumatoidArthritis.net Team)

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