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#210117 - 06/10/11 02:28 AM Coccydynia AKA Tailbone Pain?  
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CarlaRN Offline
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Just curious if any of you with AS experience tailbone pain? I have had symptoms from AS for about 18 years and tailbone pain for about a year, is this something that comes with AS? Anywho, I am going to see a surgeon on Wed for possible pilonidal cyst. I'm sure the Dr. will know but I want to make sure he understands my AS diagnosis, I dunno. Thanks

Last edited by CarlaRN; 06/10/11 02:28 AM.

Ankylosing Spondylitis Dx 12/20/10, Age 40
HLA B27+, meloxicam 15mg, Humira 40mg ~ 2/13/11
#210119 - 06/10/11 02:48 AM Re: Coccydynia AKA Tailbone Pain? [Re: CarlaRN]  

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i have had tailbone pain, and swelling most of my life. i am not sure, but it makes sense it is part of the dx. also the si's have bothered me just about as long. plus i think my tailbone is deformed or something as it just about pokes through my skin --it seems to stick out. does that happen with you? i am always "sitting" on it, so i think it is irritated. it has bled on the skin over it in my life.

that is all i have. hope it helps. s.

#210120 - 06/10/11 02:55 AM Re: Coccydynia AKA Tailbone Pain? [Re: ]  
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CarlaRN Offline
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No I have never had anything feel like it's poking out...but it is very painful, hurts to touch, sit, get up, I also have a pilonidal dimple....I would think with the humira, if it is inflamed it would not feel this way.


Ankylosing Spondylitis Dx 12/20/10, Age 40
HLA B27+, meloxicam 15mg, Humira 40mg ~ 2/13/11
#210121 - 06/10/11 03:50 AM Re: Coccydynia AKA Tailbone Pain? [Re: CarlaRN]  
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Soccerdocmom Offline
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I do, but it's not 100% clear if mine is related or if it is the result of a tailbone break that somehow was never diagnosed. The tailbone no longer stays in place; it dislocates quite easily when I sit for more than about 30-60 minutes (less time if I am also actively flaring). It makes standing up (especially getting out of the car!) a challenge at times. I can actually feel the tailbone slide out of place (not too painful) and when I go to stand up, I have to move slowly and let the tailbone pop back into place. It's a couple seconds of OWOWOWOWOWOWOWOW!!, then it's just sore again.

I am looking at this point of having it removed, but I will have to time it perfectly as the recovery CAN be a bit lengthy, and I teach.


Kim: finishing the PhD SOMETIME in 2013! Dx'd with Undifferentiated Spondyloropathy (officially!) in October 2010 and gastroperesis in August 2011, now adding Sjorgren's and VERTIGO to the mix. Mom to 1 daughter with AS (on FULL disability), and 2 sons with UDiff (1 a graphic designer-freelance and 1 an elite level soccer player). Taking Enbrel (Oct. 2012) and Sulfasalezine (spring? 2011)
#210126 - 06/10/11 06:05 AM Re: Coccydynia AKA Tailbone Pain? [Re: Soccerdocmom]  
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CarlaRN Offline
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Yow...that sounds painful.


Ankylosing Spondylitis Dx 12/20/10, Age 40
HLA B27+, meloxicam 15mg, Humira 40mg ~ 2/13/11
#210130 - 06/10/11 12:12 PM Re: Coccydynia AKA Tailbone Pain? [Re: CarlaRN]  
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My daughter did break her tailbone as one of her cool/smart math classmates did the pull out the chair routine. But before we were at the doc for any xray, the rhumy did say tailbone pain is possible and common with spondy with all the enthesis sites down there. Turns out we were at the sports ortho for something else and he took a quick xray and saw healing in her tailbone and knew it was a cracked tailbone in her case.


Daughter diagnosed 2004; son diagnosed 2006. Both are currently without spondy meds and currently in a medicine induced remissions. One has been pharma free for 3 years; the other one for 2 years.
#210141 - 06/10/11 01:55 PM Re: Coccydynia AKA Tailbone Pain? [Re: TennisAce]  
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Yes, looking back I think the tailbone pain I had starting back in 2004 was one of my earlier symptoms. My upper back pain started around 2006 and more classic SIJ area got progressively worse starting around 2008. The tailbone pain faded over time and I never found out just what caused it.

Pain that is felt in the coccyx area may be referred or radiated from a variety of locations including the lumbar spine; or it may be related to the coccyx itself. Pretty hard to self-diagnose.

Is the dimple symptomatic/causing problems? Any chance it is actually spina bifida? If so then perhaps it is related to the pain.... do you have symptoms of a cyst? http://www.mayoclinic.com/print/pilonidal-cyst/DS00747/DSECTION=all&METHOD=print

Whatever this is, I hope it is resolved soon!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
#210143 - 06/10/11 02:58 PM Re: Coccydynia AKA Tailbone Pain? [Re: JenInCincy]  
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stressed Offline
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My severe tailbone pain is what actually got me on my road to diagnosis. I was in horrible pain, just woke up one morning and it was sore then over the next day it got to the point i couldn't move. That's when my doc did a bone scan, mri, and cat scan and saw the inflammation, i got a diagnosis a month later. I have had steroid injections that didn't work for it. But i have had 2 nerve blocks and they have done wonders, i have no pain. They last for about 6 months and then the pain starts coming back but it is still no way near the pain i had at the beginning. I have never injured my tailbone in any way. They said it was from the AS.

#210159 - 06/10/11 08:07 PM Re: Coccydynia AKA Tailbone Pain? [Re: stressed]  
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Beth Offline
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Yep, I get it too. That and neck pain were my two earliest symptoms. I'm always having to try to adjust no matter what type chair I sit in. I haven't ever had any type of injury either so I've just lumped it in with the rest of the spondy symptoms...


Beth

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