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What Does it Feel Like?

What Does it Feel Like?

“What does it feel like?” my friend asked (asking generally what the pain of RA – the experience of RA felt like). I was floored…and, for the first time in probably ever, at a loss for words.

I’ve spent the better part of eight years trying to put into words my experience with RA. It’s not only hard to explain the disease but the symptoms are unlike anything I’ve ever felt, as they are to most people.

How do I explain Rheumatoid Disease?

Yes, I’m in pain. Yes, I experience limited motion. Yes, the side effects of medications affect me more than the actual disease. But, how do I say all this in a way someone with no knowledge of the above can understand it.

I say it feels like I’m wading across a neck-deep mud puddle. But, that covers every day movement. That doesn’t even scrape the top of the pain barrel. I asked my friend to describe her worst physical pain. It was very similar to a pulled muscle. I said, ‘imagine that pain, in your joints, with every movement you make, times 10’. That’s not exactly true though, is it? Except during flares I don’t feel my pain too acutely. I feel a throbbing low-grade ache as I suffer through every movement. I don’t feel like I’ve broken a bone or ripped a tendon apart but the pain I feel is definitely real and excruciating. But, once again, that doesn’t really illustrate what it feels like to live with this pain. Even now, I am just throwing out words. I don’t know to explain the pain so, let me come back to it.

The complications of feeling with RA

I take a lot of medications with a lot of side effects and more often than not I feel them more than the RA itself. Explaining side effects is easy and hopefully, most people have experienced some of them in their own lifetime. ‘Why put yourself through that?’ they might ask. ‘Because, a few of these side effects means I don’t lose my ability later in life, that I have as much of an able-bodied experience for as long as I can.’

But still, the question remains ‘what does it feel like?’..And honestly, I can’t really describe it. The pain, the disability, the ache, the mental strain, the insomnia, the tossing and turning every night, the constant awareness of every single action. I often use the Spoon theory to describe Rheumatoid Arthritis. However, once again, that only depicts the energy levels. I ask what does your typical morning look like? ‘The usual,’ they say, ‘wake up, brush teeth, eat breakfast, and go to work’. Okay, let’s break it down. How do you get out of bed? How quickly? How do you swing your legs over? I go over every movement from the second they open their eyes. My friends realize that I am aware of every action, every twitch. They are blissfully unaware of their physical privilege. And why shouldn’t they be? How do you explain your RA to friends who ask?

I love the empathy. My friend wanted to feel what I feel, understand what I go through every second of every day. But I just couldn’t tell her. I shrugged and looked down at my hands and said…

“You can’t know, until you know.”

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

  • JBehr
    4 months ago

    When people ask me what it feels like I just tell them I cant put.it into words. Just know that it is uncomfortable and hard to deal with. Then I tell them you really cant know until you have to live it.

  • dsoliver
    5 months ago

    You captured the bottom line of the feeling of coping with RA with one sentence.

  • Nonnie
    1 year ago

    Hi there, only reading article now and what got me the most is your closing “You can’t know, until you know” – and I think not one of us wishes this on anyone else, especially not those close to us. I have also tried to explain it, but you either sound like you just want sympathy or get out of something, or it sounds like it is really nothing at all. If my experiences are not the same as yours and I struggle to understand what someone else is going through, how can one actually expect our “normal” friends and family to understand what we go through? Wonderful article as always. Strongs… sure there is a special place in heaven for all warriors / Spoonies.

  • betharooski
    1 year ago

    Hang in there girl! You are so right describing the hard times of ra. Thankfully the disease has many faces to different people. On our darkest days our rheumy can help us start up a treatment plan for flares or make an adjustment somewhere to pull us through. Even our family and closest friends may not be aware of this ordeal. So—we should all be kinder to others since we never know what physical, emotional or mental pain they may have too. Pass it on ….

  • Monica Y. Sengupta moderator author
    1 year ago

    Thank you for the lovely comment!! I really appreciated it! All the best, Monica

  • Avie47
    1 year ago

    This was a wonderful article. I want to give it to my two adult children, but I think it would worry them. And I don’t want them to think I’m looking for sympathy. On the other hand, my daughter took me to the zoo the other day and I could only make 90 minutes with a walker. My son likes taking me to rock concerts, but those steep stairs are just too much for my legs. And if I fall over, I am pretty much doomed. I have hinted about the pain, but they don’t want to hear it. So I sit here wondering what to say to give them a clue without making me appear to be a hypochondriac. Walking is exactly as you said, trying to wade thru mud. My thighs feel like they are beginning to atrophy. I am grateful for this site.

  • Monica Y. Sengupta moderator author
    1 year ago

    Hey Avie47!! Thank you so much for sharing on my article!! I completely here you. It find it awkward sometimes to describe what I’m feeling without looking for pity or sympathy. I just want someone to understand!

    Do you think your children would try to understand what you’re going through? If they don’t, you are always welcome here. Our community is always open and here to support you!

    Have you spoken to your doctor about physical therapy or any exercises you can do to bring mobility back to your legs? ~Monica

  • lindajumper
    1 year ago

    You did a fantastic job of trying to explain but what I really like is you talking about how virtually impossible it IS to explain. My least fav guessing question is, “is it as bad as my arthritis in my knee?” Grrrrrr! This may sound sick and I’m prepping an article on this as we speak, but I find myself wrapping the whole disease process up in one word: AUTOIMMUNITY. For whatever reason, people seem to understand that but not the painful manifestations of the disease. Who’dve thought?
    Good job with this. I feel ya!

  • Monica Y. Sengupta moderator author
    1 year ago

    “Why yes, it is! It’s exactly like that! x10, in every joint in my body…” Sometimes my sarcasm gets the better of me. Heh.

    Thanks so much for your kind words, @lindajumper! I felt like I was all over the place but trying to describe this autoimmune condition is also a hop-around, sometimes. All the best with your article!! Thanks for sharing on mine 🙂 ~Monia

  • Mafalda
    1 year ago

    I have RA, Fibro and OA. My trauma psychologist asked me yesterday how does my pain feel like. I replied, ‘it is a visceral, ingrained pain, from every single nerve ending, 24/7’. He said ‘at the celular level’. Yes, I think he understood it but he was surprised, as nobody would ever guess I’m in pain… I’ve lived with it for many years and learned how to fake ‘looking normal’. I’ve also learned to distract my mind and push the pain to the background.
    Then he asked how do I rate it in the 1-10 scale. I replied ”a constant 7-8′. Curiously, it seems that all his other patients with chronic pain also rate theirs as 7-8. I explained it saying that the pain scale is very subjective. It depends on what has been the strongest pain we’ve ever felt, considering that it can always be worse. We must leave room for ‘improvement’.

  • Monica Y. Sengupta moderator author
    1 year ago

    Mafalda, thank you so much for sharing on my article. I am so sorry you’re dealing with so many different diseases! I can’t imagine how painful and tiring they are together! I am like you, I try to appear able-bodied so no one would guess I’m sick. Unfortunately, that means that a lot of people don’t believe I’m ill!

    The pain scale bothers me so much!! It’s not a useful gauge and my doctors have said the same thing as you. Since you mentioned it I thought you might enjoy this article on the arbitrary pain scale: https://rheumatoidarthritis.net/living/on-a-scale-of-1-to-10/

    Thanks so much for sharing on my article!! ~Monica

  • RheumTrucker
    1 year ago

    I’m at that eight plus year mark myself, and what you said of the ache- that horrible deep and endless ache- resonates with me greatly.

    These days my RA is well controlled and the Ache is uncommon, and when it does appear it’s usually short lived.

    The stiffness is there, but I really only notice it after I’ve had a prednisone burst. As I bounce out of bed in a happy corticosteroid induced state of bliss I always think “ah-ha! Now I remember what feeling normal feels like.” and then, every time, EVERY single time I feel disappointed when the bounce is gone and the stiffness creeps back; I should really know better by now.

    I thankfully have forgotten what the really bad pain felt like. I suppose this is an excellent gauge of successful treatment over the years. I still remember, however, that I once knew that pain – and I remember the frustration I had when I couldn’t explain so my family and friends would understand.

    Eventually I did write about the RA experience, and The Rheumatologist Magazine printed it. During the process of expanding my original piece ‘The Flare’, the editor emailed me and said “if you had the ear of all rheumatology, what would you say?”.

    This is what I said…

    https://www.the-rheumatologist.org/article/a-patients-perspective-on-ra/?singlepage=1

  • Monica Y. Sengupta moderator author
    1 year ago

    Hey @RheumTracker! Thank you so much for sharing that article. It was wonderful!!

    I am so glad your RA and symptoms are in check. It sounds like whatever you’re doing is working!

    All the best, Monica

  • lindajumper
    1 year ago

    Lisa? Is this you ha. I’m so impressed with your article. Just linked over to it. I’m fascinated with the strides you’ve made. Do you mind telling which biologic you take? I recently started half dose xeljanz. Still miserable (took almost 20 yrs for diagnosis) but SED rate, CRP are normal! Fingers crossed. Are you off prednisone now? I’m stuck on 5 mg…love/hate it, right? 4 coronary stents, 2 knees, 2 shoulders, wrist. We’re all like the walking wounded!
    Great article!

  • Monica Y. Sengupta moderator author
    1 year ago

    Sorry to hear that you’re still not feeling well but I’m glad the Xeljanz is working? And the prednisone! When I read your comment I thought of an article I recently wrote: https://rheumatoidarthritis.net/living/gotta-love-it-gotta-hate-it-you-just-gotta-take-it/ I thought you might enjoy it, @lindajumper!!

    I hope you continue to trend upwards! Thanks for commenting on my article! ~Monica

  • Gail
    1 year ago

    Wow, you did a good job of explaining the pain of RA. I am now on infusions which are helping somewhat. I’m glad to hear you are doing pretty good with your new medicine. I was on the drug study for Enbrel and it worked miracles for many years until it didn’t. Seemed like one day I felt pretty good and the next day the pain started to rear its ugly head. Since then, many, many medicines with no good results. My last resort are the infusions.

  • MayteR
    1 year ago

    I was recently diagnosed and people ask me how it feels all the time. I am also at a lose for words. I usually say, “you know how your have a long great workout after you haven’t gone to the gym in 6 mo.?” That’s how it feels, cause I feel it all over my body. It does almost feel muscular to me rather than my joints since it hasn’t affected my hands and feet.

  • Monica Y. Sengupta moderator author
    1 year ago

    That’s a great way of explaining it, @mayter!! Thanks for sharing on my article. Have you spoken to your health care team about your muscular pain? They may be able to help you find some relief for it. All the best, Monica

  • Lac294
    1 year ago

    I tried to explain this recently to some friends. Different body parts can be different as well, but my hands seem to currently suffer the most. Fingers, palms, wrists all blend together into one huge nightmare. I told them it was like sticking your hand into a bear trap. Then you had to function, trying to open a bottle of water, or get dressed or put your dog’s leash on…all while wearing a crushing bear trap that no one else can see.

  • Monica Y. Sengupta moderator author
    1 year ago

    That’s a horrifying visual but a very accurate one, @lac294!! And it always depends on how much pain, stiffness, swelling not to mention enviornmental or social factors. The feeling of RA is a mess on any given day! Thank you so much for sharing on my article! ~Monica

  • jewel
    1 year ago

    Ditto! No knows unless you experience that pain! They see the terrible crippling but not the pain. It never quits and for me it has been 30 yrs with no remission.

  • Monica Y. Sengupta moderator author
    1 year ago

    So sorry to hear this, @jewel, but it sounds like you are a strong individual! Thank you for sharing on my article! ~Monica

  • Sunbound1
    1 year ago

    Exactly my experience!! Perfect description of the excruciating agony my hands go through. They feel like they will explode into bits from the pressure. If I dodnt live it I would never be able to understand it.

  • deb856
    1 year ago

    I explain it like having the flu…the body aches you get but much worse!! It is hard to explain to someone who doesn’t have it! The mornings I say feel like I am like 80 yrs old cuz the way i get up and can barely walk until i warm up some. It’s also much easier to sleep during the day since im up most of the night w insomnia. I don’t wish this on anyone but wish they understood how we feel and what we go thru

  • Monica Y. Sengupta moderator author
    1 year ago

    Thank you so much for your kind words @Gail, and I am so glad you find this website helpful and relatable!! It’s definitely helped me feel less alone so I am so glad that my articles bring comfort to others.

    Did you enjoy the concert? Sometimes (very sometimes) the pain and stiffness is worth it for an experience like that! What kind of concert was it? ~Monica

  • lindajumper
    1 year ago

    So aggravating across the board! I just left my monthly pain dr appt . The RN looked at me, asked in a bored voice, “where does it hurt and what’s your pain score? I said “the usual, an 8, hurt everywhere.” She then asked me WHY I hurt everywhere? I almost exploded! DUH! RA??? “Oh yeah….I forgot. So which joint hurts worse? ” None of them. I hurt every. where.
    Grrrr!

  • Monica Y. Sengupta moderator author
    1 year ago

    Thank you so much for sharing on my article, @deb856!! I am so sorry you deal with such severe morning stiffness and “painsomnia” (which seems to be the cute term for insomnia caused by pain). I thought you might enjoy this article on this contributor’s morning routine: https://rheumatoidarthritis.net/living/morning-misery/

    You mentioned wanting to help people understand. I recently wrote an article on the time I tried to explain my RA to a friend: https://rheumatoidarthritis.net/blog/what-does-it-feel-like/

    I thought you might also like this article on another contributor’s secret weapon to sleeping better at night (pillows!) I frequently revisit this article to try all the different pillow placements: https://rheumatoidarthritis.net/living/the-pillow-queen/

    If you try any of the pillow tips, could you please update me how it felt? I would love to know if they helped! Thanks again! ~Monica

  • Gail
    1 year ago

    Monica, I loved your article. I have been asked numerous, numerous times to explain how RA feels. I could never come up with exactly how it feels. This is the reason I love this site. People on this site know what you’re going through. Know the pain when it hurts just to move, the tossing and turning at night because no matter how you lay in bed, something is hurting. I am currently on a prednisone burst because last Friday night I went to an outside concert. The night was cold and damp. I woke up Saturday and DID NOT want to move, I hurt so badly. I have had RA for 36 years and I am so done with it!!!!

  • Richard Faust moderator
    1 year ago

    Hi deb856. Sounds like you are one of the many in the community who particularly struggles in the morning. Turns out there is research finding that there is a chemical reason for the increased morning stiffness. One of our contributors writes about it here: https://rheumatoidarthritis.net/living/new-research-on-morning-stiffness/. Hopefully, next will be figuring out how to combat it. Best, Richard (RheumatoidArthritis.net Team)

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