Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 3
This blog post is part of an ongoing series on the so-called “complications” of Rheumatoid Arthritis called RA Is Complicated: “Complications” of Rheumatoid Arthritis
Stephanie: Profile in Courage
Last month, we took a look at Rheumatoid Arthritis in the vocal cords or larynx, called Cricoarytenoid Arthritis (CA). I hope you’ll read both blog posts on CA, Part 1 and Part 2, in which you’ll find some of the common symptoms to look for and some surprising statistics about CA in RA.
Doing research on Rheumatoid Arthritis, I have encountered several remarkable RA stories – all with actual lives attached! One of those lives is a fun loving lady named Stephanie. Today’s blog is a treat: in this profile in courage, you’ll meet a fellow RA’er who lost her voice permanently in 2004 due to Cricoarytenoid Arthritis.
How did I find out Stephanie has CA? I knew that she had Rheumatoid Arthritis and we had chit-chatted a little on Twitter. I had seen her cooking blog. One night, I noticed her bio said “voiceless chickie.” I knew that was either some weird joke – or her RA!
Steph’s RA story
Stephanie has had RA most all of her life. Her Juvenile Rheumatoid Arthritis began at age two. She endured years with no RA treatment due to the confusion of doctors about JRA and the state of science / RA treatments at the time. She even waited for an entire year to see a rheumatologist on two occasions.
The doctors were unable to recognize all of Steph’s RA symptoms as Rheumatoid Arthritis. Some of her main complaints were problems with her tendons, eyes, skin, lungs, and you guessed it: her larynx. Of course, she has had lots of joint pain and weakness, too.
Steph’s vocal cords left her unable to speak for 5 whole years. Her many years with untreated or undertreated Rheumatoid Arthritis left her vocal cords and lungs permanently damaged.
Moral to Steph’s RA / CA story
There are at least two morals to Stephanie’s Cricoarytenoid RA story:
First: There is no perfectly typical pattern to Rheumatoid Arthritis onset.
Second: However, it is critical that we promote better education of doctors, patients, and the public about what Rheumatoid Arthritis can do to a person so that early diagnosis and treatment is possible. This brave woman has many other things to teach us. I hope you will read her whole story on our Onset Story pages. The ending is not only fascinating, but critically relevant for many of the goals of RA Warrior.
Note: In this video on her own blog you can actually hear Stephanie’s voice which has recovered slightly now that she has begun to take the DMARD methotrexate to treat her RA during the last few months.
Read the first 2 parts of this series: Cricoarytenoid Arthritis in R A (Rheumatoid Arthritis), part 1
Recommended reading:
What Is Joint Protection for Rheumatoid Arthritis?
Can Rheumatoid Arthritis Affect the Spine?
Is there a blood test for Rheumatoid Arthritis? Part 1
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*blushing* The write up is great! Thanks for including me!
I have flare-ups that affect my voice. I get hoarse and I find it difficult to swallow. Sometimes, when I am eating I have to drink because it feels like I am choking – this actually happens at least one a day. The hoarseness, throat and neck pain, the change in the range of my voice, pain when speaking and swallowing, shortness of breath and difficulty breathing – I never thought that they were separate issues so I did not bring them to my doctor’s attention.
There is so much out there about RA that doctors have only begun to find out or that are so rare that doctors do not even look at. All be can do is be our own advocates and make our voices heard because if we do not, our conditions could complicate our lives and the lives of those we love.
Thanks for posting this and allowing Stephanie to tell her story.
From what I’ve found, the CA is not rare. We RA’ers are very well trained to not complain so that’s why the stats on this are “all over the map.” But I have read several more current studies / articles saying that it is now known to not be rare; at least a third of RA’ers admit to having symptoms. And over 3/4 of autopsies show there is CA with RA’ers, often without symtoms having been reported.
In Part 2, you can see what happened to me when I brought it up to a dr. – We RA’ers already are dealing w/ people thinking we’re complaining of an imaginary disease, so we tend to keep quiet about symptoms that sound as crazy as choking.
Lana, I’ll do another post soon to discuss CA dangers and treatments. You are right: We MUST be willing to speak up to our docs about this and take it seriously. And yes, we have only begun to understand the science of this disease.
And thank you again Stephanie.
Kelly, you are absolutely right. We are “trained” not to speak up. I still find myself doing it when I see my Rheumatologist every 3 months. Even after all this. I’m so grateful to be finally on the mend (sort of), I feel bad about “complaining” to him about the things that still aren’t being helped. Even at physio, I feel guilty if I ask her to treat an extra joint. And we shouldn’t feel that way. Maybe some day, we don’t have to.
Lana, I too have choking and difficulty breathing. I choke least one or twice a day. I breathe so shallowly all the time that I have to sleep with a CPAP machine. I do not have sleep apnea. I just can’t breathe deeply enough. I also get terrible chest pain in the breast bone area. All these things, I never thought could be RA so I never mentioned that I “used to have it”. If I had, I could have been treated a lot sooner. I learned the hard way to make sure I mention the “weird stuff” as chances are it’s related.
Steph! In my humble opinion: you are lucky to be alive and should never go off your treatment again – (read my disclaimer at page footer, folks. I am not her dr. and she knows that…
I don’t talk about the choking w/my docs either so far. I don’t want them to think I’m nuts in case they don’t know about it choking sensation of CA. But I will confess to the hoarseness (cant’ hide it usually) since I know that is less likely to get me labeled “nutcase.” Talk about “defensive medicine” – this is “defensive patient syndrome” ???
OK: the breastbone pain: there are tiny joints where the ribs join the sternum (called?) and I’ve had it hurt bad too. I actually cried when I watched a YouTube RA video where a woman described this breastbone pain. I felt validated. Then last month, when I met my new RD, the doc pressed there and asked if those “tiny” joints hurt me? I said, “yes, you are the first doc who believed it possible.” My new dr is much smarter than previous…
Kelly, O M G I thought I was nuts when I told the hospital that my breast bone was inflamed and killing me, I actually thought I was having a heart attack that day, I had a EMT to come get me, my breast bone was so tender to the touch, I was throwing up because the pain was so bad, no one said it was related to the RA, but I have learned so much since then…… thanks again for all your info Kelly- it helps with each read…. one day at a time I say~
Interesting information and at least I can understand why my voice disappears for about 6 weeks at a time every year. I am a singer who is very frustrated when this happens, because it is the one thing that brings me total joy and makes me feel good and the energy it brings me when I sing literally lifts me up. I have been lucky in that my fiancee is a recording engineer and musician/songwriter and I have been able to record a couple of songs so my 81 year old mother can hear me before she succumbs to liver cancer. She also has diabetes and RA but is very stoic about all of it and I guess I get my fighting spirit from her. I will never give up striving for quality of life and neither should anyone.