Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

A question for others with PMR. I often wake up with no or little amounts of fatigue and body aches and am able to do numerous things around the house. By the afternoon, however, sometime after finishing, I feel like I've been run over by a car. I'm just miserable with fatigue, aches, etc. Are others experiencing the same pattern? Thank you.

Jump to this post

A question for others with PMR. I often wake up with no or little amounts of fatigue and body aches and am able to do numerous things around the house. By the afternoon, however, sometime after finishing, I feel like I've been run over by a car. I'm just miserable with fatigue, aches, etc. Are others experiencing the same pattern? Thank you.

Jump to this post

I'm fairly new to this group but have seen a lot of good info. I'm down to 10 mg/ day of prednisone from 20 mg. Diagnosed in Nov. 2022. Have tried going to 7.5 mg but pain came back with a vengeance. Has anyone had success with CBD, THC, or combination of both? I am type 1 diabetic and prednisone is really screwing up my blood glucose.

Jump to this post

Hi there- That’s rough managing both conditions. I don’t believe there’s much (if any) research to show cannabis or CBD would address the root cause of the PMR, but it could help with pain while you continue to try to taper. I’ve had some success with CBD topical cream (I’m sensitive to medication, so too nervous to try oral CBD or anything more), but everyone is different. It’s always been as an adjunct to medication, not a replacement though.

We’ve had some concerns with my A1C going up, and my dietician has suggested some other strategies such as increasing my intake of green tea, building up my strength training (muscle mass helps lower blood sugar), and gently adjusting when I have starchy foods. I’m not a diabetic though, and at risk of developing disordered eating, so that’s why her recommendations are more of the “gentle nutrition” variety, but thought I’d mention it in case any of this might help.

Jump to this post

Thank you for your input. I'm not looking for a cure for PMR but rather some pain relief as I taper. Exercise is out right now as I just fell and have a concussion. I will talk to a dietician about food adjustments. All this is overwhelming. Thanks for your support.

Jump to this post

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.

Jump to this post

A question for others with PMR. I often wake up with no or little amounts of fatigue and body aches and am able to do numerous things around the house. By the afternoon, however, sometime after finishing, I feel like I've been run over by a car. I'm just miserable with fatigue, aches, etc. Are others experiencing the same pattern? Thank you.

Jump to this post

@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

Jump to this post

You’re welcome, and good luck to you. Sounds like you’ve got your hands full recovering from the concussion too. I hear you about looking for other options for pain relief. Other than CBD cream and gentle movement (even stretches, range of motion exercises from bed or bed yoga), we (my dad has PMR, and I’m his caregiver, but also have a different inflammatory arthritis) found topical peppermint essential oil (the smell is more pleasant to me than to me than Salonpas or Icy Hot) to help. I tried Voltaten gel, but didn’t notice much relief. Neither of us tolerates medication well (hence the topicals). I have a different type of arthritis that causes inflammation in the tendons within the joints, and I got a lot of relief out of k-tape. With his PMR, my dad has more muscle pain than joint pain, so I’m not sure if it would it would help as helpful, but I just remembered I get a lot of relief out of k-tape for something so simple.

Jump to this post

@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

Jump to this post