RA and Shoulder Pain

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Does your shoulder hurt all the time? If you have RA or other autoimmune diseases don’t think it’s just wear and tear of old age. Rheumatoid Arthritis attacks the cartilage in the shoulder joint and can also attack the ends of the tendons which are all lined with synovial type tissue which RA likes to gnaw on like microscopic versions of the old arcade Pac Man.

My left shoulder was the first of the larger joints that began hurting consistently. My right hand is primary so it was surprising that my left shoulder would begin hurting overnight without any type of injury. The pain has been consistent in this shoulder for about two years now. The right shoulder is involved also, but compared to the pain in the left it doesn’t rank on my radar most days. (By the way it’s a myth that RA is symmetrical. Mine loves the left side of my body.)

The rheumatologist that properly diagnosed me use to give me steroid shots in the top of the shoulder or in the scapula (shoulder blades) depending on the area that hurt worse, but the shots would only last a month (they are supposed to last for three months) and the pain might have diminished but never went away. The steroid shots wrecked my blood glucose levels as I am a diabetic on insulin. It finally got to the point my endocrinologist told me that if I was going to continue to get steroid injections, to call him so he could put me in the hospital overnight on an insulin drip. “No. Thank you very much,” was my response and I stopped the steroid injections. Here we are now, two years later, and I’ve got what they call a “frozen shoulder”. The tendonitis and deterioration in my shoulder has become severe enough to impact my range of motion. At 47 years of age, I cannot lift my lift hand over the level of my head and I cannot reach back further than my hip.

A MRI of my shoulder showed tendonitis with degenerative changes yet my new Rheumatologist insists it must have been some injury. He wanted to inject steroids, but my blood sugar levels are not stable with the amount of inflammation I carry in my body and I can’t afford a hospital stay on IV insulin to sort it all out.  He wants me to see an Orthopedic Surgeon about my shoulder and that is when my Primary Care Physician drew the line and said I was not undergoing a shoulder scope to satisfy his curiosity when this is typical of RA symptoms associated with the shoulder. I’m not sure what my rheumatologist will think of this kink in the care plan because he wanted the ortho to go in and take a sample of the cartilage in my shoulder for biopsy to prove or disprove my RA status and repair any damage. Sigh. I don’t know what I’m going to do. The merry-go-round of pain, inflammation, and resulting high blood sugars has caused permanent damage to my heart. I find myself wanting to lock all my doctors in a room so bad to make them talk to each other because while they quiz me about what this one said vs. what that one said, nothing is getting done.

I found little information about frozen shoulder and how it relates to RA on the web, but what I did find, I’ve shared below. I thought was very informative and actually does link RA as a cause to the condition. Don’t let your doctor tell you that it’s always caused by an injury of some sort. As we have all experienced, RA likes to beat you up in your sleep and a joint that was fine when you went to bed might not be functional when you wake up. Learn a lesson from my experience and don’t let them start physical therapy on your shoulder unless that therapist knows as much about RA as you do or they are most likely going to push that joint too far which will cause inflammation and more damage.

From the link: http://www.frozenshoulder.com/arthritis,  in regard to symptoms: “If you have a stiff and painful shoulder, and it hurts to move it, you may have shoulder arthritis in one form or another. Sufferers complain that it becomes more painful the more they move, and also that the pain wakes them up at night. Some people report feeling a “catching” and “grinding” or “clicking” sensation when they move. Some also say that the pain intensifies following a change in the weather.”

In addition, the website lists causes of frozen shoulder: “It used to be thought of as inevitable “rustiness” of getting older, simply “wear and tear” on the joints. Now experts believe it’s a lot more complicated than that, so much so that the absolute cause remains something of a mystery. We do know that there are certain factors that play a part in developing shoulder arthritis. These are: previous shoulder surgery, a car accident or similar trauma that dislocated the shoulder, inflammation of the shoulder (primarily due to rheumatoid arthritis), overuse of the shoulder, being over 50 – most sufferers of osteoarthritis are in the over-50 group, the auto-immune disease rheumatoid arthritis – this causes the body to attack and destroy its own cartilage. It wreaks havoc in different parts of the body, and can occur in the shoulder joint too.”

Currently, my PCP who is a Internal Medicine doctor has me doing pendulum exercises at home for the shoulder to help ease the problems with the tendonitis. More than likely, the course of action is going to have to include some disease modifying drugs to work with the methotrexate I’m taking. My rheumatologist has mailed me literature to review for Actemra, Symponi, and Remicade before my July appointment. Should the shoulder exercise not improve the condition, I may be adding Othropedics to my growing list of specialists.

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2 responses »

  1. Mischelle, I too have shoulder pain in both shoulders, predominantly in the left one though. This last weekend was horrific for me as my entire body felt like it had been hit with a hammer and joints crushed. Getting so weary after 14 yrs of unsuccessful treatments and no relief. I see my RA Dr this Thurs and will consider the MTX injections. I have been on Remicade, Actemra, Cymzia and now on Xeljanz with no relief. I wish you success with one of them. I was so bad this weekend two of my friends provided me with pain patches to put on the worst parts, to cover all of the pain I would have been a mummy! One patch was a scrip (Lidoderm, 5%). It alleviated the pain some where it was applied. The other, an OTC patch (Salon Pas) helped relieve it somewhat. I cannot tolerate oral pain pills. I would like to suggest reading or listening to the audio “Dying to be Me” by Anita Moorjami.
    She had an NDE ( near Death Experience) in 2006 after suffering 4 years with cancer that ravaged her entire body. I believe her experience and insight will help me/you more than what we have received. The healing goes back to “us”. We’re pretty powerful if we can believe it.
    With love and kind of spirit to kindest of spirits,
    Jeanette

  2. Thank you so much for your warm words of encouragement and for sharing your story Janette. You might ask your doctor about diclofenac topical patches or gel since you had some response with the patches you used. For a non-prescription aid I recommend J.R. Watkins White Cream Liniment. It will warn you it stinks, but it gives me consistent relief by turning down the volume on the stiffness and pain, especially when used in combination with a heating pad on low setting. I’ve shared it with several of my autoimmune disease friends and they all report back that it is one of the better OTC topicals they have tried. We have dubbed it “stinky stuff”. You can order it on line but the Cracker Barrel restaurant/stores carry it as well. Thank you for the book recommendation. God bless you!

    Disclaimer: I am not paid to endorse any product. My recommendation is solely based upon my own personal experience.

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