Comments on: Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 3

By: Michelle

Michelle — Mon, 08 Feb 2010 15:15:15 +0000

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.

By: Viesta

Viesta — Thu, 12 Nov 2009 09:30:52 +0000

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~

By: Kelly Young

Kelly Young — Wed, 11 Nov 2009 16:35:53 +0000

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…

By: Stephanie

Stephanie — Wed, 11 Nov 2009 16:09:04 +0000

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.

By: Kelly Young

Kelly Young — Wed, 11 Nov 2009 15:57:59 +0000

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.

By: Lana

Lana — Wed, 11 Nov 2009 15:34:01 +0000

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.

By: @Farfbaz

@Farfbaz — Wed, 11 Nov 2009 14:11:54 +0000

*blushing* The write up is great! Thanks for including me!