Connect
New member with PMR
Hi, I’m Terri! I was diagnosed with PMR January 21, 2025, but I have lived with chronic pain for the last 20 years. I’m also an alcoholic with 19 years of recovery.
The (only) Rheumatologist in Central Oregon is no longer accepting patients and is taking a sabbatical, and my PCP had to look up PMR to understand how to treat it. She didn’t diagnose me, I did. I had to BEG her to run SED rate and CRP, then gave her a NIH study to read. (SED 44, CRP 12)
I have had severe symptoms for a few years, but I’m treated as though I’m drug seeking because of my history. I finally gave up when that Rheumatologist told me I have Fibromyalgia and he couldn’t help me.
At Christmas, it came to a head when I was suddenly unable to get up out of bed, shower, get dressed or drive. Urgent care told me it’s just my Chronic pain issues and to contact the pain clinic. (I REFUSE to take Suboxone - I’m a drug and alcohol counselor)
I’m just winging it with the prednisone as my PCP wasn’t sure what the taper was or how fast. She wants me off of it ASAP. (But it’s working!!!)
I just need encouragement and to know I’m not alone in this battle. I have so many questions and no one to ask! I started 20mg on 1/22, and am currently down to 17.5mg. My PCP has my next appointment in FOUR MONTHS. That seems a bit out there, but what do I know. She wants me down to 10 mg by then and taper 1 mg/ month after that.
There’s my story, sorry it’s long, but I haven’t been able to tell anyone about my journey, and I’m scared.
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
I read a study that concluded PMR patients are twice as likely to develop PAD (peripheral arterial disease) which in my case causes pain in my calves if I walk at pace for about 400 meters. It fluctuates and the pain subsides with rest.
The pain in my buttocks and thighs are the worst, whether I walk,
or not. I wake up with it and go to sleep with it.
That's quite different than what my doc is attributing to PAD for me.
Hi Terri,
I’m new here and relieved to see folks talking about PMR. So sorry about your diagnosis and struggles w/ it, but very much admire your 19 yr recovery! It’s heartbreaking you had to implore your MD to get proper blood testing. To the docs, we get it, the profession appears to be quite short-staffed (I’m north of Boston, so ya, here too). But truly, patients have better things to do w/ their time than haunt pcps and others for SED & C tests. For many, our quality of life has pretty much gone into a tailspin overnight; we’re just in pain, exhausted, and need help! 🙁
I myself am now into the third month of a second flare - the first was in 2016. This one is exacerbated by a torn rotator cuff.(!) I’ve tried Prednisone twice, but even reducing already low doses brought on awful depressive (psychological) symptoms. Plus, because of ongoing diverticula issues it was not worth the risks long term. Been carefully juggling OTCs to find relief, but that’s not a long term solution either. I’m meeting w/ a new rheumatologist this week and hoping he can offer a light at the end of the tunnel - it’s been a long winter.
Trying to explain to family and friends about the debilitating impact of PMR (when one, they’ve never heard of it, and two, often can’t even pronounce it) is really a task in itself. From everything (reliable) I’ve read, getting proper sleep, reducing stress (perhaps the biggest foe these days), and pursuing a healthier diet encourages a patient’s recovery and reduces flares. Imho, PMR sufferers need to start beating the drum loudly, on social media and elsewhere. Drawing more attention to this condition may inspire more med students into the field, research funding, and lead to safer, more effective treatment options. May your taper go well ~ Angela
-
Like -
Helpful -
Hug
4 ReactionsGood to hear! Keep us posted on your progress 😊