Describing RA pain

 

RA bloggers often describe their joint pain as “burning,” as if the affected joint is on fire.

I’ve had RA for a little over half my lifetime, but my joint pain has never felt that way. Aching, throbbing, and/or stabbing, yes. Burning, no. It has been hard for me to imagine. Just like my pain is hard for someone—a friend, a family member, a concerned stranger—to imagine. She’s sympathetic, but has never felt it herself.

As I write this, however, my left palm, knuckles and fingers feel as if a fire ishand-joint-pain smoldering inside them. While this pain, on the ubiquitous zero-to-10 pain scale, is just a “five” and only halfway to “the worst pain I can imagine,” it’s very unpleasant. I have no experience of this sort of pain beyond times when I’ve actually burnt myself on a hot iron or while cooking.

My personal “worst,” my “10” on the scale, is the pain in my left hip that hospitalized me for three days way back in 1989, just two years after I was diagnosed. This pain came on suddenly, like most of my flares. Within an hour I could barely walk. I couldn’t sit or lie down, and even standing was indescribably painful. Narcotic painkiller tablets were, for the first time ever, ineffective. I waited 24 hours for the flare to go away. When it didn’t, I crashed my doctor’s office without an appointment and begged the nurse to ask him to see me. I promised I wouldn’t take up much of his time.

Kind and concerned, he saw me a half-hour later. It turned out that he couldn’t prescribe me any stronger painkillers that I could safely take at home. So, alarmed at the intensity of the pain I was in, he admitted me to hospital and ordered intravenous morphine.

I remember very little about those three days other than several separate, floating moments of agony that dissolved into a pleasant mist as a nurse emptied a syringe into my IV tubing. I slept almost continuously. I must have eaten meals and used the bathroom and had visitors, but I don’t remember any of that. Finally, in the early evening of the third day the pain disappeared. Poof, it was gone. I went home the following morning with nothing but the sharp memory of an extended nightmare to show for my three lost days.

Today, I can fully empathize with my fellow RA bloggers who describe their joint pain as “burning.”  And I hope that the sensation doesn’t—now or ever—approach my personal “10.”

NOTE: For an excellent explanatory, animated slideshow on what rheumatoid arthritis is and how it affects the joints, click here.

 

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13 responses to “Describing RA pain

  1. Oh what a horrible experience…I hope you never have that kind of pain again. Stay well.

  2. I’m sorry :'(
    When I told my (first) rheumy that it felt like my toes were on fire, he ordered an EMG, which cost about $1k. It showed that the RA was affecting my nerves. Treating the RA adequately is supposed to (and it did) get rid of the on-fire sensation. Honestly, I felt like they could have stepped up the treatment without subjecting me to another test. Maybe a chat with your rheumy would yield some positive results for you? Best of luck.

    • Hi Socks!
      That’s a very good suggestion, and yes, I will speak with my rheumatologist about this burning pain. I think you’re probably right about it being related to nerves. Perhaps the swelling tissue was pressing on them? Anyway, it becomes more clear all the time that my meds are falling down on the job, at least to some degree.
      Hope you’re feeling well and finally getting a little rest. ;)

  3. Sometimes I feel hot spots. I hope you get over it real fast.

  4. Wren, thanks for raising the topic of RA pain as it’s hard to pin down. Burning, throbbing, aching, tearing, stabbing…felt them all! There’s also that pain that comes from a joint that’s really swollen…sort of a pressure pain.

    • Communicating pain to others is a conundrum. I’ve experienced each of the types you named; I’m sure you have too. And yes, that pressure-pain is one of the stranger types. It’s pain that’s also a feeling of vague distress…

  5. I had the burning pain in the joints for a while at first and occasionally during a flare up now. I have never experienced the intense pain you have and hope I can avoid it. Even though we may not experience the same pains and levels, as you say, we fully empathize with each other. That is one of the only good things that I can take away from this is my fellow bloggers. Hoping you find relief soon.

    • The burning type of pain is so strange–and impossible to ignore. Thanks for the kind words, Terry. I AM feeling much better today. :)

  6. Of course that is the problem with the 1-10 scale – which I can only assume was devised by someone who had not experienced anything too horrid – our 10 and someone else’s 10 can be a mile or two apart. I’ve had a colonoscopy and a cyctoscopy and 6 hours of broken leg all without any pain relief – and people look me as if I’m totally crackers. But they were fine – any pain was fleeting even though it was BAD (the broken leg was too bad to even attempt to use a bedpan but being moved carefully was OK). But far less severe pain that is constant – that’s MY personal 10. And any pain that makes you feel sick – put me out now!

    I wonder why so many health professionals don’t understand that pain is different to different people.

  7. Hi Eileen!
    I think the pain scale is largely meant to help the medicos have at least some understanding of how the patient perceives his pain. It’s a poor measure, but I guess until we can somehow transfer our pain to the doctor so she can feel it–even for a moment–it’s all we’ve got. It would be very helpful to have a better way, for sure. And I agree with you that constant pain is the worst.

  8. Hey Wren: Gosh, just what you need: a new, different kind of pain. It’s my understanding that this type of pain is more nerve and less joint (similar to the nerve pain that diabetics suffer). Lyrica is a very effective nerve pain treatment (that some RA patients take) and you might see what your rheumy thinks. Regardless, hope this passes quickly!