I'm having difficulty assessing the source of my pain and am seeking clarification from anyone who can help.
First, the good news: As of yesterday and today, most of my pain is gone. It's been nine days since I raised my prednisone from 20mg to 25mg. I had been worried that 25mg was not enough, because I kept experiencing pretty bad aches throughout my thighs every evening.
The confusing part is that those aches would only come on in the evenings, and then by the time I woke up, they were gone. I would take my morning prednisone around 8am, and then around 5pm or so, the aches would come back, and they were bad enough that it impacted my walking. (This would last until I went to sleep.)
Given the evening onset, my assumption is that these aches were due to over-exertion from having gardened the previous weekend (squatting and standing many times). My guess is that it was DOMS (delayed onset muscle soreness), and that it felt worse in the evenings because of walking around the house during the day.
But I don't know this for sure.
So my first question is whether there is any other explanation for this. Again, ten days ago on 20mg pred I was having far worse pain . . . not just in my legs but shoulders and neck also. (I had tapered too fast.) So I went up to 25mg. That was nine days ago. The pain started subsiding. Then I did the gardening and that night the evening thigh aches started. Five days later (yesterday evening) they felt 90% better. So all points to DOMS and me having to take it easy more and not over-exert myself.
But could it be temporary prednisone myalgia that just took nine days to subside?
I'm confused about what "prednisone mylagia" even is. Is the same thing as temporary prednisone withdrawal? Or are those two separate things? Is it even possible to get an *increase* in muscle pain when you increase your prednisone? Or is it only when you taper?
This is an important question for me right now because my rheumy isn't even yet convinced I have PMR, and the reason is because I've been reporting my pain to her, and she is assuming that it is disease manifestation pain (inflammation related). She now wants to put me on a strong NSAID to see if it helps. She says she want me to do this as a diagnostic measure. If the NSAID helps, then that means I don't have PMR. However, I don't want to start NSAIDs on top of the prednisone due to the risks. I believe I have PMR. My symptoms match. They don't match any other diseases I can find online anywhere.
But she says, "experiencing symptoms while on such a high dose of prednisone suggests it is not PMR." So I am really trying to understand the differences between all these types of pain. I want to take my rheumy's concern seriously (despite being fairly certain I have PMR), which is why I'm going into such detail here and asking for clarification around the various types of pain people can experience with this disease.
Specifically...
1) Can raising one's dose of prednisone ever, in itself, *cause* pain (i.e., "prednisone myalgia," whatever that is.)
2) If so, can that pain last nine days?
3) Are leg aches in the evenings (but not in the mornings) consistent with DOMS associated PMR? Otherwise what could cause evening pain but not in the morning, even before taking my dose of prednisone?
And tangentially but related...
4) Is tenderness to the touch common for PMR? I experience this all the time now, in my thighs and shoulders. Should I be concerned about this? Not great pain, but enough that when the cats walk on my lap, or my wife's arm rests on my shoulder, I have to move them away.
5) How common is it with PMR to get small tendon tears near the insertion points? I have these in both hamstrings, my rheumy has suggested that I might have enthesitis (inflammation of the insertion sites of tendons and ligaments) rather than PMR. Her suggestion here is not unwarranted, but when I look up enthesitis and other entheseal diseases, none of my other symptoms match. This is another reason she wants me to start NSAIDs. She says if I have enthesitis they will work and I don't need the prednisone. But I really don't think I have enthesitis.
Thank you again to everyone here who has and continues to help me.
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sferios
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An interesting post - I think it’s fair to say that a lot of us struggle with the causes of our pain!
Now, I’m not a medic, nor any kind of expert, so I can only reply with the knowledge and experience I have….forgive me if I inadvertently get it wrong.
Firstly, steroid myalgia is not really pain, it is weakness. I have this a lot, finding it difficult to open car doors, lift kettles etc. These things don’t hurt, but everything feels heavy, and my legs when I walk are like lead. For me this has come on gradually, and doesn’t relate swiftly to changes in dosage.
Secondly, the fact that you have pain and that it has started to subside, does point to DOMS and also to the need to take it easier. No way could I be gardening all day! Oh, and I reckon the rheumatologist is not taking DOMS into account when he/she says you can’t have this pain on your dose of steroids. You can, if as seems likely, this evening pain is not directly part of the PMR.
Re the tenderness to the touch, I haven’t come across this to the extent you describe, so can’t really comment. Doesn’t sound pleasant though!
And regarding tendons, tendonitis is common in PMR but I can’t comment on the specific issue of tears.
Good luck in your quest and I hope you get some good information that helps you work constructively with the rheumatologist to deal with these issues 😊
Thanks Nextone. One problem I see has to do with communication around pain. None of the pain I have would I describe as severe or even moderate. But who knows if other people would? I had a perfectly healthy life for 53 years until this happened three months ago. I can't remember the last time I had any pain other than post-gym workout soreness. (I've had only a handful of headaches in my entire life).
So I don't really know pain. And when I describe it here (or to my rheumy) and I don't know if I'm exaggerating it or diminishing it.
I think my rheumy, when she hears me talk of my pain, thinks it worse than it really is. (But then again, I did have pretty bad pain when I was down to 15mg, which I believe actually was disease inflammation.)
The tenderness isn't that bad, and may also be DOMS. It's been hard accepting I can't do even 20% of the physical activity I used to do. Today, for example, I was putting together some new planter boxes outside. Big ones. They came in kits where you screw the boards together. Normally I'd be out there by myself bending over, squatting, standing, etc. But today I was sitting in a chair and asking my wife to bring me each board one at a time when I needed it, because I am worried about overdoing it.
For the last two months I have *not* been taking it easy in this way. My rheumy told me I should continue to exercise. Most of the PMR articles online also talk about the need for exercise. I think what I have realized just recently is that "exercise" means different things to different people, and I likely tore my hamstring tendons when I walked one mile when I was experiencing a lot of pain (when I had lowered my does down to 15mg). But . . . I thought I was *supposed* to exercise, and to me, walking one mile wasn't even really exercise. Before this I had been running four miles a day.
How are *you* doing these days? I read your profile and see you've had this for two years now. How low have you gotten your pred dose down to?
Pain is indeed I believe to some extent a personal rather than an objective phenomenon. When I was asked by a medic in the early days to ‘score’ my PMR pain, I said it was something like 8/10, and certainly worse than post surgical pain. But this wasn’t an objective measure, it was influenced by the fact that PMR is unpredictable, occurs in various areas of the body, not just a surgical site, is disabling in terms of everyday activities, has no predictable end point and so on…..whereas after surgery you may be in a lot of pain, but generally you have a good idea how long it will last……so comparing different types of pain is like comparing apples with oranges 🤷♀️
Similarly, how much to exercise is down to the individual, and to what you can tolerate. I’d say exercise gently, certainly, but don’t overdo it to the extent that you have pain or stiffen up.
I’m okay, thanks for asking. It’s taking me a while to taper down, but not an especially long while compared to others. I’m down to 8mg daily now, and am just starting to taper towards 7.5mg. It takes me 4 weeks to taper half a mg. Do look at the tapering methods in FAQs to the right of the page if you haven’t already. I still get some pain but extreme fatigue is my main difficulty currently.
Hi, I am confused about the fact that your doctor wants you to start NSAIDs to see your reaction. I don’t I understand how she can tell if you are still on the steroids as well. And as you say it is not recommended to take both.
I hope those with more knowledge will be able to help soon
Those are exactly my own thoughts, Koala. Thank you. I don't know the answer, but I think it's because she really wants me to be lower on the prednisone. I hear from tons of people here that a lot of rheumy's have this as their first priority, and it causes so many problems for PMR patients. I wish I knew how to talk to her about this without offending her. So many doctors don't like patients who come across as knowing more than they do. 🙄
I can't answer your specific questions, but in my experience DOMS can last for ages! And muscles and tendons are very prone to injury, so that once you injure one of them, even ever so slightly, it can take months to get better.
'Exercise' is tricky. some people here complain that now they can only walk 5 miles a day, but most of us cannot get anywhere near that. If you try to tough it out, or 'fight through the pain barrier', you might get away with it at the time only to end up in a heap for the next few days. It's not just the muscle problem - AI diseases can cause monumental fatigue.
Generally, we are instructed not to take pred and NSAIDs at the same time as they can both be terribly cruel on the stomach. I assume that's not what she's suggesting?
Thanks for your experience and wisdom. As for my rheumy, she *did* want me to take them at the same time, but also lower my pred faster. I don't agree with her and I told her I'm not going to do it. Waiting now to hear back form her. It's all through this very slow messaging system.
Her assistant was really short with me one time on the phone when I told him I was going back up on my prednisone because she had me taper too fast and I had a flareup. But so far she has really listened well to me (when I finally am able to talk to her). May I got lucky. What do *you* do when you don't agree with your rheumy's prescriptions or orders? Just ignore them and not say anything?
Well, as it's 6 months or so between appointments, that gives me room to say that I hadn't managed to reduce the dose that fast ...and what can he do about it? But on the whole, I have to do as I am told - which sometimes just means waiting for him to agree with me or listen to me. This is difficult because the consultation only lasts 15 minutes. And annoying, because it is my life that is being put on hold. Generally, I find that medics dismiss the idea that adrenal glands can take a while to get back into motion. And the patient can't mention knowing anything beyond basic school biology, because the moment we decide to study something other than medicine, we suddenly forget all our education and lose all ability to learn, don't we?
For me, it comes on quite readily (in my thighs) even after activity I would previously have not called "exercise." Like gardening or walking just a quarter mile. Seems to last days. But because it comes on only in the evenings, I'm confused as to what it really is. I would think DOMS wouldn't be an evening-only phenomenon.
Btw, I finally spoke to my rheumy yesterday. It's been a month. We worked through some of our issues regarding new meds and proper diagnosis. She now seems pretty convinced I have PMR, but she still wants to call it a "PMR-presenting vaccine-induced myalgia." Okay, I said. But until we know more, I'd like to treat it with PMR protocols. She was okay with that. (So I'm not going to take the NSAID, and I'm going to do a 10% per month taper.)
She says my hamstring tendon tears (which involved a little bit of the surrounding muscles) could explain the slightly elevated CK levels, but said it also looks like "Fluoroquinolone-induced Tendinopathy". Of course I have never taken this class of antibiotics but she's wondering if the vaccine may have produced a similar affect. Here's a link to this phenomenon. The thing is though... I don't have symptoms in my hands or feet or other places where people get this teninopathy. My symptoms are just in the classic PMR places. So while I appreciate my rheumy looking into everything, it doesn't feel right to me.
I also told her about this forum, and how much I've learned, and that a lot of people here got PMR after a vaccine. And the incredible work stress I had been under for 3-4 months prior to the vaccine, which all matches other people's experiences here.
In general, it went well. I feel better about the relationship. She's okay with my taper plan. Plus I have an appointment at the Mayo Clinic with a specialist in autoimmune myalgias on April 27th. She wants a second opinion also. But to me, I'm convinced enough that yesterday I bought a "PMR Warrior" T-shirt for myself.
Tell your Rheumie PMR can last 2-6 years so no hurry. The disease sets the pace not us or our docs. In early days I found light hiking to be the best exercise for me. Bending, lifting such as with gardening caused too many aches. Too much flat walking caused the same for my legs. Repetitive motion using the same muscles caused to much stress. Sitting for long period would also cause aches.
Many of us needed to stay at first dose of Pred for 4-8 weeks to clear out the accumulated inflammation. Would consider 2.5 mg tapers every 4 weeks till you get to 10mg. Then switch to 1mg taper every 4 weeks or so. If symptoms present then don’t taper.
Pred can weaken tendons. I would always wear ankle supporting shoes when hiking and use a walking stick to protect Achilles’ tendon. Hardest part was slowing down and being thoughtful about activity.
Hi sferios: the replies to your questions have been informative, even in year three for me. I would only re-emphasize the struggles of exercise. For the last decade or so, I ran 40-80 miles per week, depending on the next scheduled race; my last race was a 50k. I also cycled and studied martial arts for many years. Now it takes me a week to do a day's worth of gardening. During those early months, I could press along my collarbone or shoulders, and it hurt so bad, as if the bones were fractured. That, too, subsided. I'm convinced no one truly understands PMR pain except those of us that have PMR pain. Once the initial inflammation cleared, I felt so well I walked an hour daily and gardened. The tiredness, for me, seemed to come about gradually. I do walk every day now but tire more easily. Everybody’s body is unique. I've found it helpful to know my symptoms are 'normal' even when they're awful, and I hope you will feel the same after hearing our stories. Hang in there. You seem a determined soul, which we all need to be. You'll be giving the newbies here some great encouragement someday. 🙂
Aww thanks Dakota. It does help me greatly me to hear your and other people's stories that reflect my own new and confusing experiences. Just knowing it's normal has helped me more than I ever imagined. I love this forum and everyone here! 😍
Also, do you what percentage of PMR sufferers were runners before onset? I am finding so many similarities between myself and other people here. Fast-paced, intelligent, overachievers, etc.
Interesting you ask, I have been researching the effect of endurance exercise on the immune system. I’m finding preliminary evidence, including one study that attached a number of hours of training that causes sustained damage. Not to the point I’d quote anything just yet, but I’m determined to uncover the story. Anyway, I sent my msg this morning without mentioning my insane decision this week to move a mature dappled willow. Despite my husband doing all the heavy lifting, I tore up the muscles in my right arm. We all do seem so alike.
I also suffer from tenderness to touch almost like I am a mass of bruises. Some days more than others especially on the days it feels like I have 'toothache' like pains that are relentless. This can occur in my thighs and my upper arms. They do go eventually on resting.
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