Connect
← Return to Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?
Discussion
Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?
Polymyalgia Rheumatica (PMR) | Last Active: Jun 1, 2023 | Replies (86)Comment receiving replies
I find your post interesting. I am 63 and have been having symptoms that seem to mirror others who have been diagnosed with pmr. I currently have no diagnosis. I have had blood tests with elevated CRP and ESR. I do not have RA according to blood test results. I had a series of X-rays that indicate some degeneration in neck and shoulder areas. My symptoms appeared shortly after getting the flu shot. I have been trying to research what I do next to figure this thing out. I am currently on my 3rd round of prednisone for 20 days starting with 40 mg and decreasing by 10 mg every 5 days. My provider has not scheduled any follow up blood work or appointment and seems to be satisfied with a diagnosis of musculoskeletal pain. I don’t think he quite understands the pain and symptoms.
I have trouble getting more than 2 to 3 hours of sleep at a time. I get out of bed around 4 or 5. It is difficult to get out of bed and walk down the steps. My mobility improves as the morning goes on and around 10:00, I’m usually feeling better. I usually cannot move my arms much with limited ROM especially left side. Even when the major pain and stiffness decreases, I still hurt even at rest. Pain is mainly shoulders and hip/buttock area, heel pain, numbness in both arms and sometimes feet, feeling of being warm like a hot flash.
Seeing a rheumatologist in my area has at least a 6 to 8 month waiting time. I have an appointment with a new provider in 3 weeks so any advice on questions I should ask or additional tests would be appreciated. Thanks in advance.
Replies to "I find your post interesting. I am 63 and have been having symptoms that seem to..."
Connect
Hi Carley,
I am truly sorry to hear about your pain…. My diagnosis was basically the result of ruling everything else out and the 20 mg dose of Prednisone that relieved the pain and symptoms of PMR.
I had blood tests for everything the rheumatologist could think of. I remember some of the tests were so obscure that the phlebotomist did not know how to draw the blood for the tests and had to look up the proper way.
All tests came back negative accept the CRP and ESR which were elevated, but not so elevated that it ruled out Giant cell arteritis. I had a cat scan to see if there was something wrong internally… negative. Negative on lyme disease, RA, cancer, infection, lupus, sjogren's, MS, thyroid, and many other autoimmune diseases.
After so many years I can accurately detect the pain of my PMR. It’s not in the muscle, not in the joints, or the bones. It’s inflammation in the connective tissue. Ligaments and tendons. Especially where they connect to the bone. My muscles are strong, not affected at all. But the pain in the connective tissue is so intense that I cannot use my muscles and I have limited ROM. I also feel it in the connective tissue in my rib cage. Every breath I take and with the expansion of my ribs I can feel the pain. The tendons in my neck were so inflamed that I could barely turn my head to the side. I can feel the warmth of the PMR inflammation on my skin. It also felt like the flu because it’s systemic and the pain is very exhausting. I did have a elevated temp as well. And would often wake with night sweats.
As for advice on questions to ask you new provider… I’m not sure. I’m not a doctor, but the dosage of your prednisone seems high and too short of a duration to treat PMR. It’s been the case for me to start at 20 or 15 mg and reduce by 1 mg every two or three weeks until I get to 10, then reduce 1 mg every month monitoring the pain. If I flare up I go back up 1 mg for the month and start the taper again. It’s a long process to taper and get off the meds, but it can be done.
I hope your new doctor can provide you with answers and that your pain subsides. Keep us posted on your progress.