Cricoary­tenoid RA

Rheumatoid Arthritis Warrior is doing a series about so-called “complications” of RA that aren’t actually “complications” at all.  Yesterday’s and today’s posts are about cricoarytenoid RA.  I’m in shock.

I’m thinking back to before my diagnosis.  My PCP tested and found nothing wrong with my thyroid.  I had a referral to a rheumatologist and assumed that everything was interconnected, so never phoned my PCP to say, “I’m having trouble breathing.  What’s the next step?”  I remember the end of my initial appointment with the rheumatologist.  A four hour appointment and he never touched on the issue that was most distressing.  I’m okay with going through ibuprofen and acetaminophen like they are candy.  I’m not okay with it being difficult to breathe!  He was focussed on my hips and feet, and I implored him, “What about my throat and neck?”  After waiting months to see the rheumatologist he said I’d have to see someone else about that problem.  I was crushed.

There was obviously something wrong, so back I went to my PCP.  He sent me for a thyroid ultrasound which did nothing other than confirm that the TFT’s were right and my thyroid looked okay.  He referred me to an endocrinologist for a second opinion.  Still no answers.

In the time it took to get all those other appointments, the swelling in my throat went down.  I had stopped taking one medication that had been prescribed (despite my known allergy to it), and have been operating on the assumption that discontinuing it was the reason my throat/neck symptoms improved.  I started a prescription-strength NSAID and my first DMARD at that same time, though.  Maybe that’s the connection.

This is the most frightening thing I’ve heard about RA to date.  I’ve been religious about taking all my meds because I don’t want to lose the ability to walk.  Walking is nothing compared to breathing.

I love music.  I love to sing.  We sing in my house.  All the time.  We sing in the car.  I sing at the local nursing home. I’ve been known to joke that the residents can’t hear so it doesn’t matter what I sound like, and they’re not ambulatory so they can’t walk out on us even if they don’t like the sound.

The thought of losing my voice or needing a tracheotomy is more frightening than the possibility of ending up in a wheelchair.

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5 thoughts on “Cricoary­tenoid RA

  1. Hi WarmSocks,
    I hope I didn’t scare you, but it sounds like you were a bit already… I also had the ultrasound of the thyroid to see whether that was the cause of the fullness and pressure feeling. The ultrasound turned up no thyroid nodules or enlargement. I too was crushed when they said, “We don’t know…” (I’ve had thyroid disease 30 yrs.)

    I have heard what you are saying from others, too. We need to educate some docs, I guess. And RA’ers & the public about what RA can do so we can seek treatments and live to be very old, and walk, and annoy (I mean bless! ;D) lots of people with our singing…

    • No, I don’t think you scared me. You provided helpful information.

      This entire situation is so frustrating. Go to a doctor, and another, and another, and nobody knows the answer. Or one person does an exam and presents to the attending doctor who disagrees with the first person’s diagnosis. Then another doctor says “definitely not” and a third doctor says, “Let’s try a clinical trial of medication and see what happens.” Wow-excellent response to the meds; I guess that’s the diagnosis. I’m really thankful that my symptoms are not as obvious and severe as some people who are afflicted with RA, but it would be nice to not be considered an anomaly or fun puzzle to be figured out.

      Thanks for sharing all your discoveries, Kelly. I find it very helpful to learn all I can.

  2. I’m sorry.

    I can’t say much except I know that fear. There are certain aspects of RA I just can’t think about, or I start to lose my nerve a little.

    Maybe this is something you and your current rheumy can discuss more productively than you were able to before.

  3. Wow. I had no idea. The way they found my thyroid cancer was because I kept complaining of hoarsness/trouble breathing/losing my voice all the time. That actually had nothing to do with my thyroid but because of it they were looking around there and found the cancer.

    I lose my voice ALL THE TIME! In fact I am just now getting it back after almost a week of it being gone. Life is really difficult when you can’t talk. Just putting my son on the bus I feel horrible when the bus driver doesn’t know I lost my voice and maybe thinks I am rude for not saying good morning or something.

    This is scary stuff, but I am glad to have the information so I can discuss it with the appropriate doctors.

  4. While frustrating and embarrassing, you learn to adapt. The scariest thing about the loss of my voice was during the 5 years that a cause could not be found. Now that i know it’s my RA that caused it, it became easier somehow. With meds it’s better. Just sounds like i have a cold 75% of the time. The other 25% I still sound as bad as the video example or worse.

    Once you get over the fear, and adapt your life (eg we have cordless phones on each floor that can intercom with each other so I am able to call for help if needed), this just becomes like any other joint that has been attacked by the RA. A literal pain but it becomes your new normal. 🙂

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