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Shoulder Pain
#272509 10/19/15 07:12 AM
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SuzyQ Offline OP
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I've had bad shoulder pain for about 2 months now. I can't raise my arm above my head. Certain movements will cause excrutiating pain that radiates down my arm. My AS is not well controlled and the rheumatologist is switching me from Simponi to Remicade and I am waiting for pre-approval from our insurance. The rheumy wants me to wait to start it to see if it helps with the pain in my shoulder. I can only lie on my back for so long and then need to change position at night. If I lie on my right side, the pain in my shoulder is worse. If I switch to left side, it causes problems with my heart. I'm so done with living in constant pain and trying to survive on 3 hours of sleep a night. If I take T3's I get some relief for a couple of hours. What could be causing this pain? Any thoughts on what I can do to provide some relief? I've tried icing it and applying heat. I'm desperate for some relief and am ready to try anything. Last night I was so done by the time I went to bed, medicated myself up and only dosed for a couple of hours.

Re: Shoulder Pain
SuzyQ #272511 10/19/15 01:58 PM
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I'm sorry you're in so much pain. frown

Can you sleep in a recliner? or try a bed wedge to sleep on? When my back acts up during the night, I go to my recliner and can usually sleep for a few more hours that way. And it could be that the semi-inclined position might take some of the stress off your shoulder.

My husband has OA and has terrible shoulder problems. We knew he had bone spurs in it, but the rheumy told him at his last appt that he most likely had a torn rotator cuff as well. No surgeon will touch him because he has lung problems. It's so frustrating to see someone with pain and not be able to fix it!


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Shoulder Pain
SuzyQ #272514 10/19/15 08:07 PM
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Might be worth investigating what is causing the shoulder pain - if you have a torn tendon for example, then that may need surgery. I think an ultrasound should show up what is happening with muscles and tendons.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: Shoulder Pain
SuzyQ #272515 10/20/15 01:17 AM
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When I wake up in the night, I do head downstairs to the recliner. I still find I have pain. In the past, I would eventually fall back asleep. Lately, the pain has been worse and I find I can't get more sleep even if I take more pain meds. Maybe I will try to get into my family dr. Not sure he will do much if it is related to my AS and it will take a couple of weeks to get an appointment. Hopefully by that time I will be approved and starting the Remicade. I wish the rheumy had done more when I saw him.

Re: Shoulder Pain
SuzyQ #272516 10/20/15 09:21 AM
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Sounds like a frozen shoulder... Not necessarily an AS thing but more of a middle aged woman thing. Steroid shots in the capsule and physio make a world of difference along with time...


Officially dx'ed Nov/10 after being symptomatic 10+ yrs. HLA-B27 positive. 200mg Celebrex twice a day, Targin for pain. Started SSZ in Nov'13 for peripheral issues. Jan '14 added Gabopentin for SI flare related nerve pain. Nov '14 added MTX to the mix. July '15 liver enzymes went crazy and off SSZ and MTX. Back on both at reduced dosages in Aug'15. March '16-son#1 dx'ed AS

Re: Shoulder Pain
SuzyQ #272517 10/20/15 08:53 PM
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SuzyQ I've got no advice for you. But I'm having an episode of shoulder pain too. It's been two months and I can see the swelling where my clavicle meets my shoulder. Unfortunately I've had to stop my humira due to a thrush infection. Sleeping has become difficult. You're not alone smile hope you find some relief.


Male, 37 years old. First symptoms at 20 years old. HBLA+ and diagnosed with AS at 40 years old. 10 years treated with indomethacin, tramadol. Now on Humira/Tramadol/Cyclobenzeprine.
Re: Shoulder Pain
SuzyQ #272679 11/21/15 11:39 PM
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Went to the dr about a week and a half ago. He said that I only had 70 degrees of movement and zero in trying to put my hand behind my back. He sent me for an x-ray and ultrasound. I went back yesterday for cortisone injections and got the results. X-ray was normal. Ultrasound showed inflamed bursa, one inflamed tendon, one torn tendon and nerve impingement. He said to give it a couple of days and then to start on range of motion exercises at home and then start physio in a couple of weeks. I go back to see him in 6 weeks. My shoulder is worse from the injection but hopefully things settle down soon and I can get some sleep. It's tough trying to function on only 2 hours of sleep a night for 3 months!

Re: Shoulder Pain
SuzyQ #272683 11/22/15 06:34 PM
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Hi SuzyQ, I can empathise with you. I had months of pain and not enough sleep after my shoulder fracture and then frozen shoulder etc earlier in the year.

Make sure your doctor checks your blood pressure even if it's normally ok. Not wanting to scare you, but I found out the pain and lack of sleep can be dangerous when I went to the family doctor feeling rotten after 3 months of pain and found out my blood pressure was 220/110 and got sent to the ED to check whether I was having a stroke or heart attack, and to check for any damage to my eyes, kidneys, heart etc. After that I got some meds to help me sleep and got on tramadol for the pain and managed better after that...


Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.
Re: Shoulder Pain
SuzyQ #272687 11/23/15 01:27 AM
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I have lots of shoulder pain too no relief from both NSAID and biologic.

Re: Shoulder Pain
Shirley #272695 11/23/15 04:07 PM
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Thanks for the heads up! I will pull out my blood pressure monitor and check it. I already have high bp, kidney problems and heart problem. I see the nephrologist next week so he can also check. I get kidney function checked every 1-2 months already.

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