Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

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.

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.

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.

Dear @ripley, Wow, your situation is complicated! I will try to address the part of your question that addresses what kind of Dr you need. I wouldn't ignore the possibility of an alergist for the headaches. I was born with migraines and the doc that helped was an alergist. Also my first occurance with PMR was handled by my primary GP. (Although, he never gave me a diagnosis so when I lost access to him I really hadn't learned anything.) My first rheumy when it reoccured 30 years later didn't have a clue what was wrong with me and I spent way too much time with him before I found one who saw what was going on. So, give them chances but not too many before you move on. My pain is definently in my muscles and I think that is telling. Best of luck to you.

What muscles were affected with pain, and what kind of treatment did you have? Thanks.

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.

I found getting all the reports of the blood work into the Rheumatologist hands bot me an appointment in 3 days. Gather up all you blood work and anything from any doctor who has treated you and request the fax number for the rheumatologist you want to see. WE faxed everything on a Tuesday and has a phone call on Wednesday that she would see me on Friday.Prior to going I wrote everything I had experienced -when I had the pain, what I took to try and alleviate the pain. I went back to the beginning which was 6 months prior. She listened tome talk for at least20 minutes to my history and immediately suggested I had PMR and sent me for blood work. My inflammatory markers were very high (C Reactive protein). Sending the reports I had were what caused her to get me in right away. I hope you get some relief soon.

I knew something was going on with my legs (weakness) for awhile but it was complicated due to drug reactions from new glaucoma treatment. (Don't let them tell you there are no reactions to those drugs!) Then after a bad flare of Crohn's resulting in appendix removal and taper off steroids, suddenly I could not longer pickup my 35 lb western saddle because of pain in my biceps. Not a gradual thing at all. I knew something was wrong but what?! Took 4 yrs and a 2nd Rhuemy to nail it. 20mgs of methyl prednisalone and 2 days and pain was gone. During the 4 nonproductive years, I talked Rhuemy into supplying Low Dose Naltrexon (I ended up with 2 mg). It stopped (2 days again) my ache when I wasn't moving (trying to sleep). Also, it healed my small intestine which was full of small ulcers. So, now the Crohn's is inactive. Look into it, amazine drug. I did without during hip replacement and after 3 weeks was hurting all over again. ( Before pred) so I got back to it as soon as I cleared the opiates. Hope all that helps.

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.