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Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
Replies to "A question for others with PMR. I often wake up with no or little amounts of..."
Yes!! If I’m active and busy by 3 or 4 I’m in pain! Mornings now are better in that I can get out of bed and move around with little to no pain, it’s very discouraging.
Just yesterday, after two happy days (daughter's graduation followed by a nice meal out and next day a nice luncheon for future daughter-in-law both with a little alcohol and some sugar via bites of dessert…both firsts since dx), i came home and was greeted by some stressful work news and then I felt significant pain in upper arms, esp right. Could it have been due to deep knee bends I showed I could do earlier with out-stretched arms? Makes no sense but then none of it does. Good news? The pain is gone this am. Weird.
Hi there- I don’t have PMR (I am a caregiver for my father who has PMR), but I have a different inflammatory arthritis, and that cycle happens to both of us. I think fatigue is part of most chronic pain conditions, even when we’re feeling well. Our PTs and care team recommend pacing, so basically trying not to overdo it when we feel good—of course way more easier said than done! The idea is to do what you can when you feel good, but try to leave some energy in the tank so that it doesn’t take so long to recover. The concept of “pacing” always went in one ear and out the other for me, until an OT used a green/yellow/red light analogy. She suggested to try to sandwich physically or cognitively demanding tasks (yellow or red light) with more restorative activities (green light). Our bodies are doing a lot of work for us that can’t be seen fighting off the inflammation and building up endurance, and once I started attempting to look at it that way, I suppose I can see why I get so tired so quickly… This isn’t to say that it isn’t insanely frustrating though! Good luck to you; you’re not alone.
@richardab Can you remind of us of your time course ? Origianlly ,i assume, you had PAIN and Stiffness in the morning ? You questions made me think of these paragraphs from this very recent paper : - for me - I would say I am no longer miserable ! ( After increasing from 15 , to 20 to 30mg in May and now tapering from 30 mg to 25mg over 15 days)
(2023 – C Dejaco first author: Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica) the numbers are footnotes.
IN OVERARCHING PRINCIPLES section : Management of GCA and PMR should be based on shared decision making between the informed patient and the physician.
The vast majority of patients with GCA and PMR accept initial treatment given the sudden onset of symptoms and their significant impact on quality of life and daily activities. Once remission is achieved, ‘coming off glucocorticoids’ and ‘living with glucocorticoids’ become important aspects of the ongoing care for patients.55 The maintenance of the target must, therefore, be discussed in light of emerging adverse consequences of treatment, particularly in the long term. Similarly, the possible advantages and disadvantages of different drugs and routes of administration need to be discussed with patients on an individual basis.
Patient awareness should also be directed to understand the distinctions between disease-related and disease-unrelated symptoms. For example, shoulder pain in PMR might be due to a relapse or unrelated to PMR, such as osteoarthritis, adhesive capsulitis or rotator cuff disease. Fatigue can be either a symptom of GCA and PMR, caused by other conditions or due to treatment.48
Hi Richard, I am sort of the opposite - morning is when I'm most achey and stiff. On good days I will do a short workout (30 mins or less.) And similarly, by afternoon I need a nap and usually 30 mins is enough to get me through the rest of the day! That said I've always been a bit of a napper as was my mom.
Hi, Richard.....I, too wake up with no pain, no fatigue or stiffness and lots of energy. However, in early afternoon, all of that changes and I experience extreme stiffness in both legs to the point of having difficulty walking. And sometimes, the stiffness along with a feeling of pins and needles extends to my arms. Usually that lasts for a few hours and the stiffness dissapates. Although I had typical PMR symptoms in the beginning starting this past April, I had and still have no inflammatory markers. My rheumy tried methyprednisolone and it worked immediately, and I was on a dosage of only 6 mg. However, the afternoon pain & stiffness returned and I am now on 8 mg. of "regular" prednisone which, I understand, is not quite as strong as the methyprednisolone. Does anyone else have similar symptoms?
@richardab, When my PMR was active I did have a lot of fatigue, aches and pain late in the afternoon. This mostly occurred for me when I overdid my activities that day but I did notice less frequently if I hadn't done too much exercise.