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Re: My collarbone hurts... [Re: ZeldaLady] #282361
01/09/19 10:45 PM
01/09/19 10:45 PM
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Actually I did review with my rhuem back in august, gave me some prednisone and I think if you look back a few months ago I was probably on here sounding crazy.

Didn't help.

Unfortunately at this moment my lifestyle does not permit me to partake in PT and in some cases buy some of the drugs that can help.

I firmly believe that a direct strike on the earth by an asteroid will solve all my problems. Nothing to worry about if everyone has been equally terminated.

Re: My collarbone hurts... [Re: ZeldaLady] #282392
01/13/19 05:10 AM
01/13/19 05:10 AM
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This is my first post after being diagnosed with AS. I took my first shot of Humira last week. It is the shoulder pain that has been the worst for me. I think my symptoms are mostly peripheral, but looking back, I think I have the SI joint pain too on one side. Back to the shoulder, my rheumatologist sent me for an MRI of the shoulder, suspecting I had a rotator cuff tear. I felt like I didn’t have a tear and turned out, I didn’t. The MRI showed severe bone marrow edema in the distal clavicle with inflammation in the acromioclavicular joint. The bone marrow edema in the clavicle and lack of response to prednisone, steroid injection, and NSAIDS is what led to my being dx’d with AS. CRP and ESR were sort of elevated with mild anemia too. HLA27 negative. I am thankful I went ahead and had the MRI as the rheumatologist had suggested the MRI only if I was prepared to have rotator cuff surgery. I asked him to order it because I wanted to know what was going on with my shoulder, although I wasn’t ready for surgery if there was a tear. Proved to be a good choice to have the MRI.

So, waiting for the Humira to kick in. Here is hoping it helps. smile. Kind of stinks learning this is a long-term condition.

Last edited by iache; 01/13/19 05:12 AM.

CML dx’d 11/2013
AS dx’d 1/2019 (Humira)
Re: My collarbone hurts... [Re: iache] #282401
01/13/19 11:29 PM
01/13/19 11:29 PM
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Originally Posted by iache
This is my first post after being diagnosed with AS. I took my first shot of Humira last week. It is the shoulder pain that has been the worst for me. I think my symptoms are mostly peripheral, but looking back, I think I have the SI joint pain too on one side. Back to the shoulder, my rheumatologist sent me for an MRI of the shoulder, suspecting I had a rotator cuff tear. I felt like I didn’t have a tear and turned out, I didn’t. The MRI showed severe bone marrow edema in the distal clavicle with inflammation in the acromioclavicular joint. The bone marrow edema in the clavicle and lack of response to prednisone, steroid injection, and NSAIDS is what led to my being dx’d with AS. CRP and ESR were sort of elevated with mild anemia too. HLA27 negative. I am thankful I went ahead and had the MRI as the rheumatologist had suggested the MRI only if I was prepared to have rotator cuff surgery. I asked him to order it because I wanted to know what was going on with my shoulder, although I wasn’t ready for surgery if there was a tear. Proved to be a good choice to have the MRI.

So, waiting for the Humira to kick in. Here is hoping it helps. smile. Kind of stinks learning this is a long-term condition.


Welcome and keep us updated on your Humira experience! Enbrel did wonders for me for many years.

Re: My collarbone hurts... [Re: ZeldaLady] #282426
01/17/19 12:06 AM
01/17/19 12:06 AM
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I have had pain in my collarbone on and off since my diagnosed with AS a year ago. I am in PT now, and have found that several stretches can help.

First, lie on a foam roller so that your head and spine are supported by the foam roller (you will need a long foam roller). Extend your arms out to the sides with your hands up (like you are saying "touchdown"). This stretches the pectoral muscles, which are under the collarbone. You can google to see more pictures.

You might also try a heating pad and massage to the area under the collarbone. I have also tried CBD oil with some success. I am also a big proponent of the Quell device--I wear it every night.

Good luck.


HLA B27+, AS, Crohn's, type 1 diabetes
Re: My collarbone hurts... [Re: Photosinpink] #282429
01/17/19 12:59 AM
01/17/19 12:59 AM
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Originally Posted by Photosinpink
I have had pain in my collarbone on and off since my diagnosed with AS a year ago. I am in PT now, and have found that several stretches can help.

First, lie on a foam roller so that your head and spine are supported by the foam roller (you will need a long foam roller). Extend your arms out to the sides with your hands up (like you are saying "touchdown"). This stretches the pectoral muscles, which are under the collarbone. You can google to see more pictures.

You might also try a heating pad and massage to the area under the collarbone. I have also tried CBD oil with some success. I am also a big proponent of the Quell device--I wear it every night.

Good luck.

I’ve enjoyed online videos by “Bob and Brad, the most famous physical therapists on the internet.” <<— That is their slogan and a search of the slogan should bring them right up. They have one geared for AS patients. I was going to a comfort care clinic and found that Bob and Brad show you how to do the same things I was paying for the physical therapist to teach me.


CML dx’d 11/2013
AS dx’d 1/2019 (Humira)
Re: My collarbone hurts... [Re: ZeldaLady] #282520
01/31/19 06:06 PM
01/31/19 06:06 PM
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I'm currently in the middle of a flare up that is affecting my upper back, shoulders and neck mostly. But I also have chest pain that comes and goes. I must say, it feels pretty unnerving. I'm pretty sure it's my sternum and ribs flaring up, but I'm going to call my PCP tomorrow just to rule out anything with my heart. It seems to get a little better after taking an NSAID.
I know of the rare disease called Tietze syndrome, in which the cartillage between ribs and sternum becomes inflamed. I think it could also be something like this?


Medication: Arcoxia 60mg as needed
No official dx yet (no visible fusion of SI joints on x-rays)
Re: My collarbone hurts... [Re: Lacan] #282523
01/31/19 07:48 PM
01/31/19 07:48 PM
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Originally Posted by Lacan
I'm currently in the middle of a flare up that is affecting my upper back, shoulders and neck mostly. But I also have chest pain that comes and goes. I must say, it feels pretty unnerving. I'm pretty sure it's my sternum and ribs flaring up, but I'm going to call my PCP tomorrow just to rule out anything with my heart. It seems to get a little better after taking an NSAID.
I know of the rare disease called Tietze syndrome, in which the cartillage between ribs and sternum becomes inflamed. I think it could also be something like this?


Could also be fibromyalgia, which frequently overlaps with AS.

Re: My collarbone hurts... [Re: Winston] #282549
02/03/19 04:38 PM
02/03/19 04:38 PM
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Netherlands
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Lacan Online
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Originally Posted by Winston

Could also be fibromyalgia, which frequently overlaps with AS.


After a few days I can definitely say it gets better with Arcoxia. So I think that rules out fibromyalgia?


Medication: Arcoxia 60mg as needed
No official dx yet (no visible fusion of SI joints on x-rays)
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