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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
Trying to figure out if I have PMR so looking for help on symptoms others experienced before diagnosis. Firstly I will mention that in mid-2019, I started having periodic headaches at my left temple. To rule out GC arteritis, I had an ultrasound of temporal arteries and biopsies on each side of my head, both negative. My SED and CRP were normal. I recently had another temporal artery ultrasound which was normal. The headaches have continued to today but doctors rule out GCA because of my test results.
In late January 2022, I got Covid. After 5 days I had severe body aches in my arms and legs for two months. The pain level went down for a while, but about 3 weeks ago I started having very bad pain at the back of my head and neck, upper arms, and sometimes upper legs that last all day. I have muscle knots in my neck and shoulder blade area. My Dr prescribed a low dose muscle relaxant med which helped for about one day and now doesn't seem to do much. Tylenol helps a little.
Along with that, the left sided headaches come and go throughout the day. It seems I either have intense pain at my upper neck or a bad left temple headache. I don't have jaw pain or vision issues. Recent blood work shows my SED rate went from 15mm in April to 5mm and my CRP went from below .04 to below .20 since April. Recently my lymphocytic colitis flared up, so that could have caused the raised CRP.
I saw a rheumatologist a month ago, before my body aches started becoming intense. It's a long wait to get another appt with him or any other rheumatologist. I have also been seeing a neurologist and have a video appt with her in 3 days.
Can a family practice doctor treat PMR and Arteritis, or is a rheumatologist or neurologist preferred? What tests did others have to diagnose PMR? Thanks.
Replies to "Trying to figure out if I have PMR so looking for help on symptoms others experienced..."
I was diagnosed with PMR about two years ago. I was dealing with extreme discomfort in my upper torso and upper legs. My family practice doctor ordered a blood test which indicated a very high CRP level (.80). He prescribed prednisone (20mg daily), and I experienced almost immediate relief from the discomfort. Because of my favorable reaction to prednisone, he determined it was PMR. I then went on a 10 month prednisone taper. I was also diagnosed with GCA about year ago and I am currently receiving monthly infusions of Actemra.
My first indication something was wrong was constant pain in my left shoulder deep inside. Then I had serious pain in both feet. Podiatrist said plantar fascitous but now I know it was early PMR. I began having serious hip pain when I walked any distance. Then neck and shoulder pain keeping me awake at night. Pain meds did not help. Finally the muscles were attacked in my wrists and hands and it became nearly impossible to roll over in bed. At that point my PCP said she suspected PMR and put me on 20 mg prednisone. Almost immediately all my pain was gone. Rheumatologist after testing for other things said I had PMR as well. Have been on prednisone since December 2020 still tapering downward ever so slowly. Hope you find answers soon.
I’m sorry you are having so much unexplained pain. There are several diseases and conditions that have symptoms that are similar to PMR, including fibromyalgia and vasculitis. It also could be Covid related. Have you tried prednisone? Some people do have PMR in the absence of the usual blood markers for inflammation. You might ask your pcp for a course of prednisone to see if it relieves your symptoms. I wish you luck in your journey and I hope you can find some relief soon. Be sure to keep us updated.
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I also should mention that my pain is not in my joints, but in the muscles. For instance, I have no problem raising my hands above my head.