PMR: Pain moving around your body

Posted by theref @theref, Sep 4 5:33am

Hi, I got diagnosed with PMR about a month ago and have been in constant pain since then. I’m working with my Doc trying to get the Prednisone dosage sorted but everyday is pretty rough, walking being pretty difficult until early/mid afternoon. I’ve noticed that the pain moves randomly between my knees, hips me shoulders with the pain each day being stronger in different parts of my body. And today completely out of the blue one of my elbows has become quite painful – random!!! The joys of PMR!! Wondering if this is common with others? Thanks

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

Hello @theref, Welcome to Connect. So sorry to hear you having PMR like pain that moves around. There are many conditions that mimic PMR and I think that's the reason it's so hard to diagnose. I've had PMR twice and while the pain would sometimes be worse in the shoulders or legs, it really wasn't moving around randomly.

@lexaprobiotic recently started another discussion that sounds similar to what you describe here – Undiagnosed Autoimmune Disease – No one will listen to me: https://connect.mayoclinic.org/discussion/undiagnosed-autoimmune-disease-no-one-will-listen-to-me/. I posted the following information in her discussion that might also be relevant for you.

"People with palindromic rheumatism usually have no symptoms between attacks. This is different from other types of inflammatory arthritis, such as rheumatoid arthritis, as people with these conditions will have joint problems most of the time.

During an attack of palindromic rheumatism, the joints involved – and the tendons and area around them – will feel painful and stiff, and may look swollen. They might also feel tender and hot, and the skin over your joints may look red."
— What is palindromic rheumatism?: https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

Does any of this sound familiar to you? It might be worth discussing with your doctor and possibly getting a referral to a rheumatologist/specialist.

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Thanks for that John. Hmm it doesn’t really sound like what’s going on. My Doctor is very sure that I have PMR and research certainly supports it. There may be a couple of things going that need exploring. I’ll be catching up with the Doc soon so will have a conversation about that.

Really appreciate your response – very useful!!!

Cheers

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Hi Therf. This certainly sounds familiar. I have only been diagnosed a couple of months and since then have had pain in my lags (both at the same time), groin areas, right knee and things, left bicep, right wrist (currently), shoulders…. When I wake at 4 am I move various body parts to see where it is today. Quite an experience…..almost like a game. I play French horn in an orchestra (this is played with the left hand) so I am so thankful that it is my right wrist that is affected and dreading that the pain with move to the left. I must say this is the weirdest disease I have ever known.

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@theref

Thanks for that John. Hmm it doesn’t really sound like what’s going on. My Doctor is very sure that I have PMR and research certainly supports it. There may be a couple of things going that need exploring. I’ll be catching up with the Doc soon so will have a conversation about that.

Really appreciate your response – very useful!!!

Cheers

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Theref…hi. I have had a hard time underdstanding my pain and wondered if.it was PMR or one of my other autoimmune gigs. I kind of understand what you are saying that the pain might be moving around so to speak. I think it can feel like that and sometimes it's from what activities you have done and how your body moves when affected by pain. Once you compensate for pain sometimes pain pops up in different and new places from muscles etc being used differently. I have had pain every day but each day the degree is different or it presents differently. So my shoulder and upper arm have been painful then one day my elbow and lower arm….OY! Also each day the areas involved "play at different volumes" so my back pain can drown out my arm. Then….I hope that makes sense. I will say I have learned a lot here and had to see I have problems with the typical PMR plain targets….and PMR affects the muscles not joints. I also see that we might each have non traditional areas that hurt. At the beginning my hands did me in. So not sure any.of that sounds right but I wanted to respond. Good luck.
Be well. Mickie

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@elizabethjoan

Hi Therf. This certainly sounds familiar. I have only been diagnosed a couple of months and since then have had pain in my lags (both at the same time), groin areas, right knee and things, left bicep, right wrist (currently), shoulders…. When I wake at 4 am I move various body parts to see where it is today. Quite an experience…..almost like a game. I play French horn in an orchestra (this is played with the left hand) so I am so thankful that it is my right wrist that is affected and dreading that the pain with move to the left. I must say this is the weirdest disease I have ever known.

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Hey there @elizabethjoan thanks for the reply. Yep your experience sounds so similar. Nothing in my wrists so far, so fingers crossed it stays that way. Wow, playing a French horn in an Orchestra is pretty impressive – hopefully PMR doesn't interfere with that. I referee rugby, so that's definitely not a happening thing right now!! It sure is a weird disease alright. Thanks so much for the reply and good luck!!

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@njtodctode

Theref…hi. I have had a hard time underdstanding my pain and wondered if.it was PMR or one of my other autoimmune gigs. I kind of understand what you are saying that the pain might be moving around so to speak. I think it can feel like that and sometimes it's from what activities you have done and how your body moves when affected by pain. Once you compensate for pain sometimes pain pops up in different and new places from muscles etc being used differently. I have had pain every day but each day the degree is different or it presents differently. So my shoulder and upper arm have been painful then one day my elbow and lower arm….OY! Also each day the areas involved "play at different volumes" so my back pain can drown out my arm. Then….I hope that makes sense. I will say I have learned a lot here and had to see I have problems with the typical PMR plain targets….and PMR affects the muscles not joints. I also see that we might each have non traditional areas that hurt. At the beginning my hands did me in. So not sure any.of that sounds right but I wanted to respond. Good luck.
Be well. Mickie

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Hey @njtodctode thanks so much for the reply. Completely get what you're saying – you make complete sense! Like you, I'm at the stage where the pain never goes away, with the amount of pain varying from day to day and place to place. On Saturday I woke up and could hardly walk (literally), but the very next day I could walk so much more freely. Thankfully that has continued and was able to ride a bike yesterday! Such a weird disease! I wish you all the best very in your PMR recovery and thanks so much for the reply. I really appreciate it. Cheers

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I can relate to you. The same thing is happening to me. I have been complaining for a number of months of pain in my neck, upper arms , shoulders, knees and hips. Because my sedimentation rate was ok my rheumatologist ignored me. Finally, after experiencing a week of horrible pain, my rheumatologist said he thought I had PMR! I was hoping that I would not have to increase the Prednisone again but he moved me up to 10 mg. The awful pain has subsided. Hallelujah!

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@tillysam

I can relate to you. The same thing is happening to me. I have been complaining for a number of months of pain in my neck, upper arms , shoulders, knees and hips. Because my sedimentation rate was ok my rheumatologist ignored me. Finally, after experiencing a week of horrible pain, my rheumatologist said he thought I had PMR! I was hoping that I would not have to increase the Prednisone again but he moved me up to 10 mg. The awful pain has subsided. Hallelujah!

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I had pain for a year before my Sed Rate and CRP were elevated. After 3 years I’m down to 1/2 mg but having pain again not to level it was. Knees, hands, upper arms and neck. I see doctor tom and we will see what blood tests show.

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After 3 years not sure what aches are my PMR, arthritis or aging. My husband is a physician and believes it’s all related to my PMR and that it effects everyone differently. I’m waiting patiently for this to go into remission.

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My hands continue to be swollen and painful, especially in the morning. Rheumatologist says not PMR. Validating to hear from others who have the same issue as we deal with PMR. I do find that moving and exercising helps a lot, with my mood as well as my pain level. Sometimes it's hard to stay positive. Even when the pain is tolerable, it gets old. I so appreciate all of your posts, validations and helpful suggestions.

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@theref

Thanks for that John. Hmm it doesn’t really sound like what’s going on. My Doctor is very sure that I have PMR and research certainly supports it. There may be a couple of things going that need exploring. I’ll be catching up with the Doc soon so will have a conversation about that.

Really appreciate your response – very useful!!!

Cheers

Jump to this post

I was diagnosed with PMR back in Jan. 2022 and put on 20mg Prednisone immediately and the pain also subsided immediately (like overnight). I had been completely debilitated for the previous 5 months. Basically could do nothing, even sit on toilet or reach around. Lost use of my right hand and had to where a splint, which effect my work. Couldn't dress very well. It took an extremely long time. Could not drive as my neck was not co-operating, or my arms and shoulders. It was a terrible time.
Pred was like the miracle cure, however, reducing the dosage is not easy. I'm down to 11.5 mg as of this week. Some pain, but mostly manageable. Not in a rush as small amounts at a time (like .5 mg) seem to work better than a huge drop. It's not a race to get off the Prednisone. It's about pain management and quality of life during this time. Don't get dragged into the "you must reduce quickly" thing that some doctors and rheumatologist tend to believe. My new GP says slowly and if the pain returns go up a bit and he says "at least you are trying". All the best!

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@milld835

I was diagnosed with PMR back in Jan. 2022 and put on 20mg Prednisone immediately and the pain also subsided immediately (like overnight). I had been completely debilitated for the previous 5 months. Basically could do nothing, even sit on toilet or reach around. Lost use of my right hand and had to where a splint, which effect my work. Couldn't dress very well. It took an extremely long time. Could not drive as my neck was not co-operating, or my arms and shoulders. It was a terrible time.
Pred was like the miracle cure, however, reducing the dosage is not easy. I'm down to 11.5 mg as of this week. Some pain, but mostly manageable. Not in a rush as small amounts at a time (like .5 mg) seem to work better than a huge drop. It's not a race to get off the Prednisone. It's about pain management and quality of life during this time. Don't get dragged into the "you must reduce quickly" thing that some doctors and rheumatologist tend to believe. My new GP says slowly and if the pain returns go up a bit and he says "at least you are trying". All the best!

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It is not a race. Just taper off slowly so that you feel well.

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