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My collarbone hurts... #282243
12/18/18 07:36 PM
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
12/18/18 11:01 PM
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Los Angeles, CA
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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
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
12/19/18 01:39 PM
Joined: Jan 2016
Posts: 31
Joshua Tree, CA
jtmak Online
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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
12/20/18 01:35 AM
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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
12/20/18 11:00 AM
Joined: Jan 2016
Posts: 31
Joshua Tree, CA
jtmak Online
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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
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 and continuing Prozac, Vit D, Folic Acid, Cyclobenzaprine
Re: My collarbone hurts... [Re: ZeldaLady] #282350
01/08/19 04:15 PM
01/08/19 04:15 PM
Joined: Jan 2016
Posts: 31
Joshua Tree, CA
jtmak Online
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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
01/09/19 06:16 AM
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sdot Offline
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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
01/09/19 07:33 PM
Joined: Jan 2016
Posts: 31
Joshua Tree, CA
jtmak Online
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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
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