I was diagnosed yesterday by a Rheum with PMR. I'm actually not on board with it. Partly because I don't think he did enough investigating before proclaiming the verdict, and partly because I don't think I fit the parameters. Interested in what PMR veterans have to say.
I have a colorful history of mechanical orthopedic problems. Nasty spondylosis in my neck in the moderate to severe range. Lumbar problems. SI joint dysfunction. All of those mechanical problems create muscle/tendon/ligament and pain problems.
The reason I was sent to the rheum is pain in both hands, both feet, both knees. I have a majority of the tender points for fibro. Fatique. Morning stiffness. Sleep problems but not from pain.
I have a history of Vitamin D deficiency. My ESR was normal but my CRP was elevated (12.2) on the latest round of blood tests. My PCP ran blood tests and I was negative on the ANA, rheumatic factor, Lyme and thyroid.
I don't have shoulder involvement. I think that is where this went off track. I have pain and muscle tightness in my neck and upper back but that can be tracked right back to the cervical spondylosis which gets aggravated by my job which is sitting at a computer all. day. long. I don't have range of motion problems except from the mess in my neck. But the rheum is interpreting my upper back tightness to the PMR.
The SI joint dysfunction creates problems with the IT band and the big muscles moving the hip and thigh. It tightens them up like WHOA but it responds to PT perfectly well. Again, I think the rheum is conflating the orthopedic stuff with PMR symptoms.
I can alleviate the pain symptoms quite handily with Ibuprofen. But they pop back again after I stop taking it. I have a bad history with Prednisone and I am very reluctant to take it as a test to see if there is a marked improvement especially because I can get that marked improvement with Advil. The symptoms I can't account for are the fatique and sleep problems.
Going for a second opinion tomorrow. I actually think this is more fibro + mechanical arthritis than PMR.
Would love to hear some thoughts to help me clarify this in my head.
JJSmart
Fatigue and poor sleep can be PMR. My neck and shoulders and upper arms are troublesome this flare up but not really when first diagnosed 12yrs ago.Then the crucial test was how I responded to an IM prednisone injection (amazing as within 48hrs was down on floor cleaning skirting boards which I had been unable to do for several years.This time though half awful side effects to pared tablets including huge weight gain. Sent back to rheumatologist. This time they have started me on methotrexate after counselling about it from the nurse.Hope your second opinion sets your mind at ease and good luck
Hi JJ,
i have to agree with you that your diagnos is a little suspect and glad you're getting a second opinion considering your other health issues. No need to take a drug that you can't tolerate well if you don't have to.
I'm not a medical person but this is my experience. My PMR started with pain and stiffness I thought was caused by abusing muscles during a move. It got worse quickly and affected my shoulders, arms, butt and thigh muscles. I had trouble sitting, standing up, getting out of bed, walking etc. The pain in PMR is bilateral but doesn't necessarily affects all those muscle groups. It generally doesn't respond to analgesics or NSAID's to any degree. From what I understand, the diagnosis is determined by response to 15 to 20mg dose of prednisone and you usually respond within a few hours to a few days. The prednisone only takes care of the inflammation that causes the pain. Fatigue is part of PMR and I've always had sleep problems but found it worse since being on pred.
There is a lot of great info on this forum and wonderful people that share their knowledge. PMR and prednisone affect us all differently but we are all here for each other.
I hope you get a proper diagnosis soon and can get relief from your pain.
Hugs, Diana🌸
I think I would get a second opinion.....Good luck! Barbara
Thanks! I'm going tomorrow to see another Rheum. I think this time I'm going to be more assertive and ask a lot more questions.
Thank you. I hope you can find some relief on the methotrexate.
Thank you! I see another Rheum tomorrow and if I get the same diagnosis I am going to be assertive in asking for an explanation. I'm sure it's possible to get PMR as an overlay on mechanical arthritis but I want that spelled out for me.
I just think the Rheum I went to was a bad choice all around. I brought MRI results which detail the abysmal condition of my spine and he wasn't that interested which should have been a warning signal.
I actually thought considering my history that he would have wanted xrays of my hands and feet to see if their were signs of arthritis. (I know I have it in my thumb joints and in some of my toes.)
If it does turn out to be PMR I'm pretty well screwed with regards to the Prednisone. Last time I had a short course for my spinal issues it was a disaster and I was advised by the orthpedists to avoid taking it. UGH.
I'll just keep moving forward until I'm satisfied that all the proper legwork has been done to get a diagnosis.
JJ ---
I think you may be right it possibly is not PMR, particularly as you can get rid of the pain with Ibuprofen so easily, it will be interesting to see what the new rheumy says. Fatigue and poor sleep can be caused by a myriad of things. Vitamin D deficiency can cause PMR type pain.
My understanding and experience with PMR was it was overnight, fine one day and such pain to lift covers off me and role over in bed to get out. I suddenly couldn't bend over my hamstrings (back of thigh under butt) were extremely, extremely tight and day before I could stretch with absolutely no problem, I'm quite limber.
The pain made me feel like I was deing, I had to holler out loud and big thing is, it was mainly at night and early morning.
luckily nothing in my hands, knees or ankles.
i think that is classic PMR. Yes, moved up to include neck few days later. Had for 30 days before could get in to doctor. Ugh,
Prednisone 20 took pain level down 30% (70% pain still. )
Yes, get second opinion. So sorry for all you've been through.
I don't know about pmr, it doesn't sound to me quite like you have it, but a prescription for pred may be intended largely as a potential diagnostic aid, just to see what the response is.
The very simple answer is to try a moderate dose of pred - 15mg should be enough to see if you get the 70% response that is typical of PMR. Fibromyalgia does not respond at all, other inflammatory arthritides don't respond as dramatically.
However - given your history and the description I would recommend that you try to find a Bowen therapist and see if a few sessions of that will provide any relief. Your description fits with what I experienced and my PMR crept up over about 6 months - but I have add-ons which do respond well to Bowen. If it will help you will know within 3 sessions, if there isn't an improvement in that time it is unlikely it will help - but take away that pain and the rest becomes more bearable. It has no side effects - so always worth a go and many PMR patients have benefited.
I'm wondering all of the same. Also, I get the impression that PMR is pretty constant? I have days where I am just fine and other days when the pain in my hands and feet are nasty. Seems to be a moving target.
I've been going back and forth with pain in my hand, knees, feet since March. I have stretches where it's good and stretches where it's not so good. The feet are the absolute worst in the morning. It hurts to stand on them.
Back in July I went on vacation and did a lot of hiking. I would pop 400mg of ibuprofen in the morning and off I'd go. My knees would hurt for a wee bit but when I got into a stride they seemed to loosen up. The exercise seemed to make all the pain back right off. Even my feet were better. Does PMR work like that? As in heavy exercise loosens it up and makes it feel better?
Yeah, I think the intent is to use it diagnostically. I had something similar done when I first had the SI joint issues. It can be hard to distinguish between SI induced pain and lumbar disk issues. I had a cortisone shot into the joint and the pain stopped instantly and that confirmed the SI joint dysfunction. I know that's what fires up the pain in my hip and hamstrings. It's been doing it for 10 years. And just sitting here I can hear the crepitus in my neck (gross!) which is also a very long term thing. Hopefully the 2nd opinion will be able to better distinguish between the osteo and potential PMR.
I hear you. I'm just totally freaked about trying the pred because I had nasty complications the last time I was on it.
Thanks for the Bowen rec! There is one in my area. The PMR issue aside I'd love to try it for the osteo in my neck.
I suppose with PMR you have good days and bad days, but there usually tends to be reasons for the not so good days, such as reducing steroids, overdoing things, stress... I suppose you have morning stiffness which is one of the possible symptoms of PMR and also fatigue which may have made your rheumy think it was PMR. They often check with steroids for a week to see if there is a miraculous effect on the pain. You can easily stop immediately after such a short time, you do not need to taper if they do not work. You do seem to have more pain in the joints, while PMR tends to be more muscle pain, normally in the shoulders and/or hips. I shall be interested to see what suggestions the doctors eventually come up with.
You can have joint pain - tendonitis and synovitis are also part of PMR. They also don't respond so well to the moderate dose of oral pred as the blood supply isn't particularly good compared to that to the muscles.
Had my second consult today with a different Rheum who said she does not believe I have PMR.
She thinks I have even more osteoarthritis in my hands and feet and knees.
The tender spots between my shoulder blades are classic cervical spondylosis referred pain. She was extremely thorough and checked shoulders, hips, knees, feet, elbows. I did very well with range of motion. No impingements except in my neck which was expected. I have some referred pain in my hip from the hypermobile SI joint.
She has also ordered another run of bloodwork and a series of xrays on the off chance there is RA lurking about and a sleep study is probably in the future.
I was really impressed with her knowledge and her thoroughness. All sort of warning bells should have gone off with the first guy who didn't order any workups at all.
Not out of the woods yet but I have confidence in this Rheum that she will definitely get to the bottom of it with with her due diligence.
Wow, glad she was more thorough, though sorry you may have more OA.
gosh, I wonder if that's what's in my cervical spine area, they xrayed my Thoracic and said I do have some. As mentioned before my shoulder blades just started hurting too.
i just looked at my next blood work order and looked up acronyms and she is going to test me for Lupus, Sjogrens, connective tissue disease, and some protein for liver and autoimmune, kidney, Cancer (ugh).
wish mine had done this so many more months ago.
So happy you got another Rheumy! Good luck with results. I too feel just knowing what's going on will help...I just dislike all the waiting.
Going in Tuesday for Endoscopy.
Thanks for sharing!
I think even more OA is my lot in life!
Might be worth an xray of your c-spine if you have spondylosis in the thoraic.
My hallmarks with a c-spine flare of the spondylosis are a burning pain down the back of my neck and muscle tightness between the shoulder blades. I also find that my head starts sinking toward my chest as it gets harder to hold my head upright.
Wow. I wish you all the luck for pure negative test results in the next round.