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

For the first time since starting prednisone and Kevzara four months ago I awakened with pain on one side, the side I was sleeping on. So I guess the PRM can get suddenly worse? I was feeling great on the meds, so that was deceptive. Depressing. I guesss now the reality of this illness is hitting. Depressing.

It can feel really, really discouraging to wake up in pain and not really know why =( With or without PMR or a chronic condition, pain will still come and go…whether it may be from falling asleep funny on the couch one day or sitting through a long car ride.

I have chronic pain, and my PT told me with chronic pain, the brain processes pain differently . It’s more “familiar” to be in pain so it can come on a little easier or last a little longer sometimes if something sets it off. To help with these situations, she explained that it’s normal and okay to have a flare, and it’s still normal and okay if they pain lasts for sometimes 2 days and returns to baseline. And if it lasts longer than that, it may be time to check in with her, a doctor or take some other action.

That said…it’s still “normal and okay” to be frustrated or disappointed, which happens to me a lot too.

It was/is really hard for me to accept that “remission” is not the same as “cure” with most autoimmune conditions. I have a different inflammatory arthritis and in the beginning my rheumatologist was confident I’d achieve remission. I was sad to realize, if this is remission it still hurts. It took too long for me to get a diagnosis and find the right treatment, so we believe I developed central sensitization to pain in response.

A virus or a really stressful day can cause me a temporary flare or increase in disease activity that requires more action. There are still the everyday aches and pains that can crop up, and that gets confusing and scary if I’m constantly on the alert for it coming back…even if it’s normal everyday pain I might have had anyway.

I’m with you on how that can feel very depressing. I know it’s hard when you’re in it and wake in pain, but also we know it’s gotten better before, for the most part the medications work and whether it’s a PMR flare or transient pain, it might still pass in a few days. I hope it passes soon and you feel better.

I started an anti-inflammatory diet as soon as I was diagnosed --it's not all that different from my usual diet, which is close to the Mediterranean diet that's popular now, except to cut out red meat as much as possible and other foods on the high inflammatory list, and a lot more fruit and vegetables. They even suggest this on the Kevzara website. Whether or not it helps, it can't hurt to try to keep down inflammation and at the very least in that way support the drug regime.

Hi there PMR Group:

I have not been diagnosed, but I tick every box in terms of what I’ve read. I have exceptional pain in my shoulders, hips and now knees. Initially I was diagnosed with bilateral hip bursitis and at the time, I attributed my shoulder pain to injuring myself while carrying a bag. But it’s never gone away. Seeing a Rheumatologist by GP referral in Canada can take over a year. I am fortunate in that I may be able to go stateside with my referral.

So far, I bought a new vehicle because getting in and out of my sedan became nearly impossible. Reaching above my head isn’t happening. I have to rock myself out of bed in the morning because I cannot turn over on my hips or shoulders. I used to be able to hoist myself up on a kitchen chair to water high up plants, but I can no longer because of excruciating hip pain. Going upstairs is difficult for my hips and going downstairs is difficult for my knees. I wake up between 4 and 6 sometimes needing a tramacet, and can’t stay in bed beyond 7:30 because it’s too painful. And I am exhausted because I am not a back sleeper really, I am a side sleeper and I can’t stay on my sides very long if at all. I am getting depressed because of the lack of timely care here. Can’t do regular gardening or use my brand new paddle board. My spouse has been awesome but I’m sure is getting a bit tired of doing all the hard stuff.

ESR and Creative protein off the charts but I stupidly got vaccinated for shingles and hpv related cancers the day before testing so now I have to repeat. Am going to see if i can be tested for IL-6.

To all of you experiencing the chronic pain, my heart goes out to you and I know what you are feeling.

Thanks for letting me “blah blah”

Peace,
Phyllis

I’m with you there. As much as I am not liking oatmeal! 🙂

It can feel really, really discouraging to wake up in pain and not really know why =( With or without PMR or a chronic condition, pain will still come and go…whether it may be from falling asleep funny on the couch one day or sitting through a long car ride.

I have chronic pain, and my PT told me with chronic pain, the brain processes pain differently . It’s more “familiar” to be in pain so it can come on a little easier or last a little longer sometimes if something sets it off. To help with these situations, she explained that it’s normal and okay to have a flare, and it’s still normal and okay if they pain lasts for sometimes 2 days and returns to baseline. And if it lasts longer than that, it may be time to check in with her, a doctor or take some other action.

That said…it’s still “normal and okay” to be frustrated or disappointed, which happens to me a lot too.

It was/is really hard for me to accept that “remission” is not the same as “cure” with most autoimmune conditions. I have a different inflammatory arthritis and in the beginning my rheumatologist was confident I’d achieve remission. I was sad to realize, if this is remission it still hurts. It took too long for me to get a diagnosis and find the right treatment, so we believe I developed central sensitization to pain in response.

A virus or a really stressful day can cause me a temporary flare or increase in disease activity that requires more action. There are still the everyday aches and pains that can crop up, and that gets confusing and scary if I’m constantly on the alert for it coming back…even if it’s normal everyday pain I might have had anyway.

I’m with you on how that can feel very depressing. I know it’s hard when you’re in it and wake in pain, but also we know it’s gotten better before, for the most part the medications work and whether it’s a PMR flare or transient pain, it might still pass in a few days. I hope it passes soon and you feel better.

It can feel really, really discouraging to wake up in pain and not really know why =( With or without PMR or a chronic condition, pain will still come and go…whether it may be from falling asleep funny on the couch one day or sitting through a long car ride.

I have chronic pain, and my PT told me with chronic pain, the brain processes pain differently . It’s more “familiar” to be in pain so it can come on a little easier or last a little longer sometimes if something sets it off. To help with these situations, she explained that it’s normal and okay to have a flare, and it’s still normal and okay if they pain lasts for sometimes 2 days and returns to baseline. And if it lasts longer than that, it may be time to check in with her, a doctor or take some other action.

That said…it’s still “normal and okay” to be frustrated or disappointed, which happens to me a lot too.

It was/is really hard for me to accept that “remission” is not the same as “cure” with most autoimmune conditions. I have a different inflammatory arthritis and in the beginning my rheumatologist was confident I’d achieve remission. I was sad to realize, if this is remission it still hurts. It took too long for me to get a diagnosis and find the right treatment, so we believe I developed central sensitization to pain in response.

A virus or a really stressful day can cause me a temporary flare or increase in disease activity that requires more action. There are still the everyday aches and pains that can crop up, and that gets confusing and scary if I’m constantly on the alert for it coming back…even if it’s normal everyday pain I might have had anyway.

I’m with you on how that can feel very depressing. I know it’s hard when you’re in it and wake in pain, but also we know it’s gotten better before, for the most part the medications work and whether it’s a PMR flare or transient pain, it might still pass in a few days. I hope it passes soon and you feel better.

It's been about two months since I was diagnosed and finally it has hit on the emotional level, no matter what I tell myself. I realize the feelings are playing into general anxiety about aging and whatever lies ahead.

I printed this out to save it.