The Voices of Rheumatoid Arthritis | Arthritis Information
http://well.blogs.nytimes.com/2009/11/20/the-voices-of-rheumatoid-arthritis/?apage=2#comments
All a very interesting read Lyn, but what is better is the sound bites of the people affected telling their stories of how they discovered they had RA.
Sound bites a just around two minutes in length and is good to hear and see real people talking about RA.
Click on the images to start her up.
Lynn49,
Thanks SOOOOO much for this. Within the article there was a link to a website called "RA Warrior." I'd never heard of this before and perused the website. Lo and behold I found a reference to Cricoarytenoid Arthritis.....something that I feel certain I have as well. This is a frightening form of arthritis because you gag and can barely catch your breath because you're choking. I've had two bouts with this.
As frightening as it it, please know that it was such a relief to know there is someone else out there who has experienced this.
Thanks again Lynn, this is a great website, kudos to you!!!! Janie.
Sam, I also experience inflammation in my CJ. That one annoys me the most!!
RA Warrior has a pretty nice blog and so does Rheumatoid Arthritis Guy. :)
ETA: Sarah Nash has one as well Single Gal with RA.
CO_Mel2009-11-21 20:55:46CO_MEL:
Not to sabotage this topic, but then the title of this topic is "Voices...." and that is what the C-Joint affects, I'm curious if your symptoms are constant, sporadic or ???? Has your voice changed?
Try to download this free
"Whispering The Truth From
Rheumatoid Arthritis Survivors" eBook right now! eBook
http://rheumatoid-arthritis-joint-pain-advice.com/
it is FREE eBook that these people interview ex-RA.
All the best!
Aticha
Sam, I think we're good discussing our voices on a voices thread.
I've gotten seriously raspy and completely lost my voice twice in the past few months. Everyone was asking me why I was whispering - it was all that would come out!! For me, CJ involvement is constant, however sometimes it is worse than others. It's almost like something is "catching" in my throat when I swallow. At it's worse it's an audible sound when it "catches" (or "clicks?") and if you place you hand on my throat, you can feel it. Sometimes I wake up with a super-sexy raspy voice (kinda sounds like I chainsmoked all night) and it get's better in a couple of hours or so.
That
get's should be
gets. Sorry.CO_Mel,
I'm convinced we only only the tip of the iceberg about CA.
Both times mine came on suddenly and it's never subtle. Gagging and choking and being scared to death to eat anything for fear food will get stuck. It's almost non-stop, to the point where you can't sleep. [It's a great weight reducer!
In case you're curious, here's what I posted on the RAWarrior website about my experiences with it:
I have PsA and my joints flare pretty much like those who have RA. Two years ago I had simple outpatient arthroscopic surgery on my wrist for tenosynovitis. I came home and six hours post surgery I started gagging – it was awful. I had a wretched sore throat suddenly, too. I called the orth surgeon who confirmed that I was NOT intubated, so that could not have been the cause.
Long story short, I gagged and gagged and hardly ever slept for more than two hours at a time for over three weeks. Trips to UrgentCare were unavailing, but then a Z-pack seemed to kick in. So I figured I had some kind of bacterial infection. [Odd because my WBC wasn't elevated.]
Determined to get to the bottom of this, I saw an ENT, who suggested Cricoarytenoid Arthritis. Then I saw my Rheumatologist – who really does know everything about this branch of medicine, or so I thought – and he blew off the ENT’s suggestion.
About 8 months later, out of nowhere, it happened again. I was in a huge PsA flare at the time and had 5 steroid injections in various joints…….which magically cleared up the gagging. Overnight.
I went back to the ENT and asked him if the Kenalog did this and he said with that many injections at one time, it was possible. This time he wrote out an Rx for low dose cortisone to take the next time this happens.
I should mention that before the last attack I had terrible pain in my shoulders and neck. An MRI didn’t show anything unusual around the area of the larynx. [Were they paying attention?]
It’s the most horrible thing I’ve had to go through with autoimmune disease and I’ve been through the gamut.
But one humorous thing about this: my voice was so low and gravelly for a month or so that friends would tell me that if all else fails, I probably could get a job with a phone sex company. [Just kidding.]
Thanks for posting the articles about this form of inflammatory arthritis. For a long time I really thought I was the only one this was happening to. What a relief.
CO_Mel,
Here's the link to the 3-part article I found about Cricoarytenoid Arthritis. The link is to Part 3, but links to Parts 1 and 2 are embedded within it.
I read those, too. :) Although I would never want anyone to go through this, it's a relief in a twisted way to know other people experience it as well. Thankfully, I haven't had any choking incidents (that sounds horrible!) I'm sorry you've had to experience it at such an extent.
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