Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 2
This post is part of an ongoing series on the so-called “complications” of Rheumatoid Arthritis called RA Is Complicated: “Complications” of Rheumatoid Arthritis
Cricoarytenoid Arthritis is a secondary Rheumatoid Arthritis symptom
Rheumatoid Arthritis attacked my vocal cords during that first year of this “flare” (now almost 4 years old). Out of the blue, my voice would disappear. For hours or days, I could only whisper. But, even on good days, I could no longer sing…
It was traumatic to lose the ability to sing. I remember barely being able to walk, struggling to get to a pew at church, and feeling sad that I could not raise my arms as we sang songs of praise. And then one day, I could not sing either.
As the room full of people rejoiced, the words of the song stung my heart: “…we raise our voices… we raise our hands…“ I could do neither. I could barely move.
I felt the Lord speak into my heart that He was aware of me. I knew He was satisfied with the only offering that I could bring – a broken body and silent praise. I sat perfectly still and wept.
More important things to worry about than the hoarseness as an RA symptom…
I have done a lot of reading about Rheumatoid Arthritis. Somewhere, I had found “hoarseness of RA” on a list of Rheumatoid Arthritis symptoms. So, I chalked it up to the weirdness of “this monster,” as WarmSocks called RA in a comment yesterday. I let it go. I had a lot more urgent symptoms with which to be concerned.
Several months after I’d lost my voice the first time, I experienced another symptom of cricoarytenoid arthritis (CA). One evening, my kids jumped for water and prayed for help because I could not breathe. Yes, I was scared.
For about a minute, it was as if I were choking or someone’s hands were around my throat. Then, my throat relaxed a little. Gradually, I began to breathe normally.
This scenario was repeated numerous times. I did not relate this breathing problem to the RA. Would you? However, I kept up my reading and research on RA…
One afternoon last year, I was sitting at the computer, researching for my RA 101. I was trying to understand the ways that Rheumatoid Arthritis attacks the lungs. I called out to my kids, “Come quick!” For the first time, I had stumbled upon an article on CA and dyspnea (breathing difficulty) related to RA. After that, I was like a dog with a bone, digging up answers.
Some degree of vocal cord immobility is a common result of cricoarytenoid RA. It can lead to hoarseness, loss of voice, or trouble breathing. You can read more about that on yesterday’s post.
Maybe we ought to categorize this post under “Ripley’s Believe It or Not.”
Funny thing happened: now that I knew what I was looking for, I kept running across people who had been affected by cricoarytenoid RA. Some were searching for an answer to their “hoarseness” problem. Others had been damaged in some way because it had taken too long to get answers. (One example: read the Health Central discussion which took place earlier this year. The woman’s cousin lives with a permanent tracheotomy since her case was so severe. You may recognize one of the names in the comments section.)
Eventually, I was scared enough to see a doctor about my vocal cords. I called the office of an ENT who had treated 5 members of my family. I asked a nurse to ask the doctor whether he treats vocal cord immobility caused by Rheumatoid Arthritis. I would be happy if they’d call me back to let me know. She put me on hold, came back in 5 minutes, and said this: “He said, ‘Tell her if she can’t breathe, cut a trache.’” Sad, but true.
Since I know someone will ask, I’ll tell you that lately my voice is strong. You would laugh if you could hear how loudly I sing in my car. I’m not wasting a minute of it.
Stay tuned for more on this topic and other “Complications” of RA. Cricoarytenoid Arthritis, Part 3.
Recommended reading:
Cricoarytenoid Arthritis in RA (Rheumatoid Arthritis), part 1
Can Rheumatoid Arthritis Kill You?
Do You Take Methotrexate for Rheumatoid Arthritis?
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I have a friend who I think has this. Her sister has RA, but my friend was told that she has OA. I’ve looked at her go from cane to wheelchair, the braces on her ankles/legs, the bilateral shoulder bursitis, and thought, “You need to get a second opinion if your PCP thinks that all your symmetric issues on top of a family history don’t merit looking closer at RA as a possibility.” She also has a problem with her voice. Despite all this wonderful woman’s stiffness and mobility problems, what has been hardest for her is her loss of voice. She was a singer – a mighty good one – who can no longer sing. In all the years I have known her (?ten?) she has never been able to speak much above a hoarse whisper.
I’m looking forward to learning more about this topic. Thank you, again.
Would you be willing to write about RA complications in tendons/ligaments/muscles, such as: tendonitis (eg dupuytren’s contracture and achilles tendonitis), tenosynovitis (eg trigger finger or stenosing tenosynovitis), plantar fasciitis? These contribute to the dislocation of joints because they become weakened and imbalance the joint stability. RA contributes a general tendon contracture which contribute to the deformities: swan-neck, button-hole, claw-toe, ulnar and volgus drift, fallen arches. These things sometimes lead to pinching/pressuring of nerves, such as carpal tunnel syndrome. Another RA complication is bursitis, that can occur any and everywhere, it seems. For me, it feels as though these soft tissue inflammations are worse than the joint problems themselves. I’m willing to send you online info, if you want. Thanks for doing such lovely, honest, and thorough work, dear lady!!
I would also love to learn more about tendon/ligament issues with RA. My new rheumy (I just moved) has thrown out my previous RA diagnosis(two years) because he feels that issues such as tendonitis(which I suffer from head to toe) don’t fit the RA profile. Unfortunately, he left me with the “you are a mystery” speech and no proper diagnosis and took me off all my meds. I’m trying to educate myself. The article about the hoarseness was most informative and I appreciate you taking the time to blog about it.
Laura,
I will do my best.
That must have been hard. Can you keep a log of how you do with and without certain meds? I’d make a file of all of your questions / research also…
It’s none of my business, but I would get a second, third, fourth opinion… Whatever it takes until you have an answer. I’m sorry it’s so hard.
Kelly; I’m so grateful to you for answering my unasked question of why I keep losing my voice, get hoarse, can’t breathe etc.
! Living alone it can be pretty scary when you take a sip of water and begin to choke uncontrollably and then you are unable to speak for hours,sometimes days afterward! My old Rheumy dismissed it as he did most things and for some reason I never think to bring it to my GP’s attention, I will now, I will most definitely bring it up with my new Rheumy when I see him. Thanks again you are a blessing to us all! GOD BLESS! 
Thanks Alice. That is encouraging. Sorry if we share this BAD RA symptom, though.