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I've recently been referred to Mayo again, because of Near Syncope Bradycardia. My Rheumatologist was concerned about my fatigue, shortness of breath, sweating, pale color... not my usual self, sent us to the local ER. My heartrate kept falling into the 40's; which is not my normal. I was hospitalized for 4 days & then referred back to Mayo for evaluation of my Electrical system of my heart.
Once at Mayo, they screen you for all symptoms & when I said I was having bad back pain, they sent me back to the Mayo Rheumatologist I had met last year. The Rheumatologist then told us that I did not have AS, I have Fibromyalgia & the pain is from "Pain Patterns of Thinking".
She says that even though I'm HLA-B27 + & have symptoms, I do not have damage on MRI from last year, therefore do not have AS & need to stop my Plaquenil, Methotrexate & Cimzia. I also need to stop using my heating pad. If I begin to have damage on my MRI, then I can go back on tx.
I was shocked, how could this pain be all in my head? It wakes me & my husband up all night with my moaning & movement. (I have pain & stiffness in my back if I stay in any position too long right now.)
When I originally went to Mayo, I was on long-term Prednisone & had just been diagnoised with AS from my local Rheumatologist. The Prednisone gave me horrible anxiety, but relived my joint pain & inflammation. My local doc started the medication regimen & I started seeing results in months.
I was able to wean off Prednisone & could finally turn my neck in my car while driving, without pain or limited range of motion. My heel/foot pain/stiffness also has disappeared since starting tx & my morning stiffness has decreased dramatically. I've done fantastic, until the past month starting with extreme fatigue, back/butt/hip pain & this new heart issue.
Also, I cannot take otc or rx pain medicine, due to stomach ulcers, so I rely on my heating pad, movement, stretching, deep breathing & massage to manage pain, along with my tx.
My spouse & I are so confused & terrified of the debilitating foot, neck pain, stiffness & limited range of motion returning, but more about irreversible damage that could happen by stopping tx.
My lastest Chest xray report from Mayo came in today & thankfully my heart & lungs look good, but it stated I have spinal bone spurs (Osteophyle Formations) on the xray. I'm not sure if that answers my recent back pain issues or is a sign of AS? Any advice would be so appreciated!
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