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My collarbone hurts... #282243 12/18/18 07:36 PM
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ZeldaLady Offline OP
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So I’m still waiting patiently for my appointment with my rheumatologist in the end of January but in the meantime does anyone know if collarbone pain can be related to AS? My collarbone would occasionally hurt from time to time but it has been hurting me now for weeks consistently. It feels like an ache in my bone. I can’t even carry my purse on that side anymore because that seems to make it worse. Can anyone relate?

Re: My collarbone hurts... [Re: ZeldaLady] #282245 12/18/18 11:01 PM
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HI ZeldaLady,

yes, collarbone is affected by AS.

'anterior chest wall pain affects approximately 45% of patients with axSpa. costovertebral, manubriosternal, sternoclavicular, and costochondral joints can be involved, with the majority having involvement of more than one site." axial spondyloarthritis oxford university press. 2016. another textbook on axSpA also mentions that some of these patients present with chest pain that is usually accentuated on coughing or sneezing and at time may even mimic symptoms of atypical angina or pericarditis

this isn't really an issue for me, other than periodic general chest cavity pain and ongoing restricted lung (chest expansion) capacity.

This may sound very difficult to do, but for me, if I stretch areas that are inflamed, I feel improved afterwards.

Hope that helps,
Rich


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: My collarbone hurts... [Re: ZeldaLady] #282246 12/19/18 03:39 AM
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ZeldaLady Offline OP
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Thanks for your reply. Yea it seems to be the worst in my collarbone and the pain radiates into the left side of my neck and also into my shoulder. It almost feels like something is out of place and my neck or something needs to crack. It’s quite miserable. I appreciate your response smile

Re: My collarbone hurts... [Re: ZeldaLady] #282247 12/19/18 01:39 PM
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So sorry Zelda, i had similar issues that started this past summer and
Finally saw rhuemy last week who suspects "frozen shoulder". Its often secondary to other conditions which the MD wonders if my knots and tightness in my neck region may be contributing factors. Am still hoping for MRI to ruleout if peripheral AS in the shoulder. I mention it since i tried to manage this new pain on my own and now it has likely progressed to a condition that will take longer to heal. Good luck!


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: My collarbone hurts... [Re: ZeldaLady] #282250 12/20/18 01:35 AM
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ZeldaLady Offline OP
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What is frozen shoulder? I’m gonna have to google it. It is really bothering me. I just want it to stop. I tried googling AS and shoulder pain but didn’t really get anything.

Re: My collarbone hurts... [Re: ZeldaLady] #282253 12/20/18 11:00 AM
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I'm just learning about this but the other name for Frozen Shoulder is "Adhesive Capsulitis". It has been very painful with pain radiating down arm with tri/bi-cep muscle spasms, forearm pain, bone pain :-( and also wrist/elbow pain - all this is very new.) The pain reminded me of my early SI joint pain and makes sleeping a challenge due to being woken with pain. I've not been on any meds recently as my fusion occurred in the 80's and 90's and my attempt with Humira in 2015 caused me an increase in pain. My doctor wasn't sure if my shoulder pain indicates AS is expanding into peripheral joints ....but she was helpful in showing me the recent xrays and referred me to PT - a first referral in 34 years ;-).

Hopefully others' here can tell you (us) more on the difference when peripheral joints are impacted in AS. I would imagine an MRI on the suspected joint is still recommended? On another note, the doc offered me Mobic Rx, a new anti inflammatory which does seem to dull the pain but I still can't lift arm past 45 degrees and pain @ 7-8 on scale of 1-10, 10 being the highest. Zelda Lady, keep asking questions and become educated on AS, your body's health and it's response over time.


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: My collarbone hurts... [Re: ZeldaLady] #282345 01/07/19 06:14 PM
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Hi. I'm so glad somebody else said this. Since my mid 20's (I'm now 46), I would get flares where my collarbones would have a deep ache and hurt terribly. It would be accompanied by overall fatigue, etc. I did ask my rheumatologist and he said yes, this is part of the area that can be effected by AS, as well as the rib cage. It is an odd pain!


Female 45, ANA positive, HLA-B27 neg, MRI + sacro/iliac disease, DDD, psoriatic arthritis, coagulation defects, diskectomy
Symptoms since 15 y.o.
DX: 2 years ago AS
Past Meds: Sulfasalazine, Humira, Enbrel, Naproxyn, Cymbalta, Methotrexate, Mobic, Ibuprofen
Current Meds: Cimzia, Methotrexate, Prozac, Vit D, Folic Acid, Cyclobenzaprine, Voltaren Gel
Re: My collarbone hurts... [Re: ZeldaLady] #282350 01/08/19 04:15 PM
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Yes, it is a very odd pain. Deep bone pain, muscle spasms and limited range of motion...sigh. Am wondering if someone here can help us understand if pain in the shoulder area is considered a part of the axial AS or is it considered Peripheral AS? I've seen it categorized as both. And while my rhuemy has said my frozen shoulder is a symptom from the AS inflammation (muscle tightness), I am still unsure how AS in this region is diagnosed and how it progresses?Thanks for sharing.


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: My collarbone hurts... [Re: ZeldaLady] #282352 01/09/19 06:16 AM
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Oh god this sound like the same pain I have been having since august. I have sweet dreams of stabbing myself in the should witha knife trying to dig out this pain. Makes my back pain feel like 0. This crap is 24/7 pain. Saw a lousy walk inb doctor that told me it will go away on its own.

Re: My collarbone hurts... [Re: sdot] #282357 01/09/19 07:33 PM
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So sorry to hear your extreme pain too. Make sure to review with your rhuematolgist. I am hoping that the intensive pain experienced will lessen with PT as MD said once we can relax the tight muscles from neck and pain- we can betrer understand its connection to AS. Hang in there but do review with your rhuemy. Good Luck!


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: My collarbone hurts... [Re: ZeldaLady] #282361 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
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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
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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
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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
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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
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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
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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
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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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