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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.

Why does RA cause so much pain?

The immune system attacks joints and soft connective tissue

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.

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

  • Kimberly1965
    2 months ago

    Nice article

  • Casmere
    3 months ago

    Sorry this was meant for Daniel not Danielle

  • toomanydogs
    6 months ago

    I appreciate your take on dealing with your pain! It’s nice to know others’ pains don’t fit the pattern we are expected to follow.
    I have the problem of having pain but not really being able to say where. While I often have back pain from activity, sometimes I just hurt all over. And it may not be a lot of pain, but a little pain, all over, for a long time, adds up. It’s difficult to describe to a doctor and certainly doesn’t look impressive on a “pain scale”.
    I also have found that an injury, that in the past would have caused a little pain, or short lived pain, can now cause severe or long term pain.
    I do feel better when I am active, but there are fewer and fewer activities that are enjoyable. Also, I have found that if I stick to a mostly vegetable diet with very limited grains, I do better.

  • Daniel Malito moderator author
    6 months ago

    @toomanydogs Thanks for reading! Phantom and nebulous pain that you just can’t seem to nail down is something I’ve had before as well. Pain anywhere adds up, and don’t worry about those pain scales, me and those awful things go way back and it ain’t good. Lol. I have also heard that diets can help with the pain, you aren’t the first to say that as well. Keep on keepin’ on, DPM

  • Louises
    6 months ago

    Hello,
    I have RA since a while now and I’m French (and translator). When I was looking for resources about RA on French Websites, I always found it was either too technical or nearly morbid. Then I came across RA.net and I want to say that you guys are great! There’s always humor in the testimonies and I dig that.
    So…this being said, I think that some French speakers/readers would maybe be happy to read this article in their own language, therefore I translated it. Feel free to tell me it’s not my stuff or to use it 🙂

    Thans again for being there,

    Louises

    La douleur de la PR

    Par Daniel Malito – 23 janvier 2019
    ACTION
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    Depuis quelque temps, j’entends beaucoup de gens parler de la douleur de la PR. Dire combien elle est implacable, impitoyable et apparemment sans fin. Je sais ce que c’est, vraiment ! Il m’est arrivé de souffrir d’une douleur que la plupart des gens n’ont jamais ressentie, y compris d’autres patients atteints de PR, et c’est une douleur que je n’oublierai jamais. La souffrance est l’une des premières leçons apprises par tous ceux atteints d’arthrite rhumatoïde.

    Avant de commencer, voyons rapidement pourquoi la PR nous cause tant de douleur. Comme vous le savez probablement, la polyarthrite rhumatoïde provoque l’attaque du cartilage et des os des articulations par le système immunitaire de l’organisme lui-même. Cela provoque de l’inflammation qui, à son tour, cause de l’inconfort, de l’enflure et, bien sûr, de la douleur. La douleur instantanée est considérable, mais avec le temps, les articulations peuvent être endommagées et c’est alors un tout autre niveau de douleur. Parfois, les lésions sont si douloureuses qu’elles nécessitent une arthroplastie. Le frottement d’un os saillant contre un autre est aussi horriblement douloureux que ça en a l’air.

    Comment décririez-vous la douleur causée par la polyarthrite rhumatoïde ?
    La question que l’on me pose le plus souvent est : “Qu’est-ce que vous ressentez avec la PR ?” Comment décririez-vous la douleur associée à la PR ? Si vous utilisez la méthode clinique, il faut indiquer un chiffre de 1 à 10 et fournir un adjectif pour l’accompagner. Donc, si quelqu’un vous demandait d’évaluer votre douleur, vous répondriez par exemple, oh elle est à 7 sur 10, et c’est douloureux. Je pense que les limites de cette méthode sont déjà évidentes, mais, au cas où, voyons les tout e même ensemble. Tout d’abord, tout le monde, et je dis bien tout le monde, ressent la douleur différemment. Le 7 de quelqu’un est le 3 de quelqu’un d’autre. Le 4 d’une personne est le “Mon Dieu, je vais tuer tout le monde dans cette pièce si tu ne me donnes pas des calmants” d’une autre. Ce n’est pas fiable, pas plus que d’espérer mesurer précisément une pointure de chaussures avec un ruban de réglisse. Les verbes sont un peu plus utiles, comme éclater, piquer ou brûler, mais la réalité, c’est, quel que soit le mot pour qualifier la douleur, ça fait mal ! La méthode clinique est donc sans intérêt, elle est “out”, dépassée !

    La seule façon que j’ai trouvée pour décrire la douleur de la PR est la suivante : Je demande d’abord aux gens s’ils se sont déjà foulé une articulation ou un pouce. Puis j’explique que c’est comme deux jours après l’entorse, lorsque la douleur est vraiment à son paroxysme, mais dans des articulations aléatoires, partout dans le corps, et la douleur semble s’échapper lentement des articulations et empoisonner tout le corps. Si la personne ne s’est jamais foulé quoi que ce soit, je lui dis que je suis désolé que sa vie ne soit pas fun. Quoi qu’il en soit, c’est un raccourci analogique simpliste pour ceux d’entre nous qui ont la PR, mais pour ceux qui ne l’ont pas, je pense que c’est la comparaison la plus didactique.

    Comment prendre en charge la douleur liée à la polyarthrite rhumatoïde ?
    Maintenant qu’on sait ce que ça fait, comment agir contre la douleur ? Il y a plusieurs options. La première est, évidemment, le traitement de la douleur. Cela a fait des merveilles pour beaucoup de gens que je connais, mais d’autres se méfient, et je comprends. Les médias ont fait croire qu’au premier comprimé d’Oxycodone, vous alliez vendre vos enfants aux enchères sur le Darkweb juste pour quelques tubes de Sweet Lady Ox, comme ils disent ( personne n’utilise ce terme en dehors de la presse ). Je suis ici pour vous dire que les analgésiques sont comme n’importe quel autre médicament – s’ils sont utilisés correctement avec un médecin sérieux, ils sont efficaces. Et je vous assure que vous ne finirez pas par échanger vos chaussures contre des cachets dans l’arrière-salle d’une boutique glauque au fond d’une ruelle sombre.

    Bien sûr, on n’a pas toujours accès aux analgésiques ou il se peut que l’on souffre au point que les analgésiques sont insuffisamment efficaces. Cela m’est arrivé tant de fois que j’ai dû trouver comment faire face à la douleur sans médicaments. C’était ça ou me couper les membres. Après des années à essayer d’avoir une vie avec la PR, j’ai appris comment ” éteindre ” la douleur. Mais j’utilise des guillemets parce que ce n’est pas comme si je pouvais appuyer sur un interrupteur dans mon cerveau et ne plus souffrir, comme ces moines bouddhistes qui peuvent se piquer le visage et se transformer en coussin à épingles humain. C’est plus comme transformer une partie de la douleur en autre chose. Qu’est-ce que cette “autre chose” ? C’est extrêmement difficile à décrire, mais je comparerais cela à de la pression plus qu’à de la douleur. La différence est subtile, mais cela suffit. Je ferme les yeux et j’imagine la douleur qui monte le long de ma jambe ou de mon bras, et je ferme cette partie, comme si j’étais en train de construire un barrage sur une rivière. Je sais, ça sonne encore plus hippie qu’un buffet végétalien à un cours de peinture d’arbres nus, mais je vous assure, ça marche. Il m’a fallu des années pour pouvoir le faire de façon efficace, mais cela fonctionne vraiment. Cela vaudrait peut-être la peine d’essayer pour ceux d’entre vous qui ne peuvent pas être soulagés autrement.

    Remplacement d’une articulation pour la prise en charge de la douleur liée à la polyarthrite rhumatoïde
    Enfin, si vous êtes dans le cas où votre douleur provient d’articulations qui n’ont plus de cartilage, vous pourriez envisager la chirurgie pour remplacer une articulation. Les hanches sont un bon candidat, tout comme les genoux. Les chevilles et les poignets sont moins courants, et je crois aussi qu’il existe des articulations artificielles pour les doigts. Pour ce qui est du dos, du cou et de tout le reste, vous n’avez malheureusement pas de chance pour le moment. À moins de vouloir mettre son cerveau dans un robot. Je crois que maintenant c’est faisable. Ou c’est une fiction vue sur Netflix ? Bref, peu importe ! Parlez-en aussi à votre médecin et n’ayez pas peur de lui dire que le traitement ne fonctionne pas et que vous souffrez toujours. N’hésitez pas à insister et trouvez une solution, ou ce qui s’en rapproche le plus.

    La douleur est l’un des pires aspects de la PR, et ce n’est pas quelque chose dont on peut facilement parler aux autres autrement qu’en leur disant “j’ai mal”. Malheureusement, les gens en ont rapidement assez, même avec la meilleure volonté, de s’entendre répondre cela lorqu’ils demandent “qu’est-ce qui ne va pas”. La douleur peut être un facteur d’isolement, provoquer une dépression et entraîner toute une série de problèmes mentaux en plus des problèmes physiques. Alors, ceux d’entre vous qui sont des soignants, lisez ceci et gardez-le à l’esprit, et ceux d’entre vous qui souffrent, eh bien, je suis là avec vous ! On se reparle bientôt.

    Cet article représente les opinions, pensées et expériences de l’auteur ; aucun de ces contenus n’a été payé par un annonceur. L’équipe de RheumatoidArthritis.net ne recommande ni n’endosse aucun des produits ou traitements mentionnés ici. Pour en savoir plus sur la façon dont nous maintenons l’intégrité éditoriale, cliquez ici.

  • Daniel Malito moderator author
    6 months ago

    @louises Thanks for reading and merci de traduire mon article en francais. Je me souviens d’en peu du lycee. 🙂

    I hope that you spread the word with anyone else suffering from RA in France! We love to have readers from around the world! Tout le monde! Continue a continuer, DPM

  • Louises
    6 months ago

    Of course I do spread! To begin with my doctor who sticks to the clinical pain evaluation method 😉

  • jabbajaw
    6 months ago

    FYI…for those who may be in need, there are indeed MCP joints for the hand including the thumb which have worked out better than what I had.
    Additionally, there is also an extremely magnificent elbow replacement that works just as good as the original.
    Many great options for the foot and ankle also.
    I currently have 8 replacements and 6 fusions with more total replacements to come this year.
    Don’t allow your fear to stop you from having your maintenance done in order to have your best life possible while living with this relentless disease.
    It truly does make a difference in your pain level in the affected joint and your quality of life.

  • Daniel Malito moderator author
    6 months ago

    @jabbajaw First, let me say I love your screen name. I used to watch a cartoon called Jabbajaw and I’m thinking it’s where you got your name? If not, look it up. =:) Second, thanks for reading, and I may have to get those finger joints one day soon. You beat me on the replacment count, though, which is impressive I must say. I hope I can be as strong in the face of it all as you obviously are. Keep on keepin’ on, DPM

  • Casmere
    7 months 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

  • Daniel Malito moderator author
    6 months ago

    @casmere Thanks so much for reading! Sorry it took so long to respond, I just got a notification. I also wish you the best, and hope that you aren’t in too much pain today. Hearing that you got something out of my writing makes it all worth it. Keep on keepin’ on, DPM

  • 1o2vvs3
    7 months 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
    7 months 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
    7 months 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
    7 months 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
    7 months 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
    7 months 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
    7 months 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
    7 months ago

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

  • Daniel Malito moderator author
    7 months 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
    7 months ago

    Thanks, Daniel.

  • kayjaybee13
    7 months 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
    7 months 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
    7 months 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
    7 months 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 moderator
    7 months 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
    7 months 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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