1. < Polymyalgia Rheumatica (PMR)

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

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

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

suetex | @suetex | Jul 17, 2022

Thank you for sharing what helped you. I would value others' experience in how they overcame this annoying and physically limiting occurance. If you have other excercises that have helped you, I would like to hear of them.

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lanafromidaho | @lanafromidaho | Jul 17, 2022

About a year ago I was pushing my self to what I referred to as my maximum stress level when my daughter who lives with us and has disabilities, went into the hospital. She pulls off oxygen masks, dives over the sides of hospital beds, bends her arm so that IV fluids are cut off etc. She is a very challenging patient. I was under extreme stress. The day we brought her home from the hospital I started aching all over. The pain then went from the right side to both sides mostly in the shoulder chest area and hip area. I tried every self care thing I could think of and only received minor temporary relief. I felt it was some sort of auto immune disease but my googling did not bring up what I had. My appointment with my doctor was 5 weeks out. I asked my doctor to run blood work to specifically check for inflammation . So when I saw her and we talked she was pretty positive it was poly myalgia rheumatica and that the only thing that could help was prednisone. She warned me that it could have some really bad side effects. When I researched PMR on Utube etc. I was amazed at how accurate that diagnosis was. She started me on 10 mg of prednisone and now about 10 months later I am on 4 mg I am hoping that with a very slow reduction I can get off of prednisone by February. I have also had to learn to pace myself by doing and then resting. When I push myself too long without rest I am glued to the couch for at least 2 days or longer. This sight has been a great resource and blessing. I do not know of anyone personally who has PMR so to read comments on this sight by people going through this has been so very beneficial. Thank you. Lana Phillips from Idaho USA age 74 and also of Scandinavian descent

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 17, 2022
In reply to @lanafromidaho "About a year ago I was pushing my self to what I referred to as my..." + (show)
@lanafromidaho

About a year ago I was pushing my self to what I referred to as my maximum stress level when my daughter who lives with us and has disabilities, went into the hospital. She pulls off oxygen masks, dives over the sides of hospital beds, bends her arm so that IV fluids are cut off etc. She is a very challenging patient. I was under extreme stress. The day we brought her home from the hospital I started aching all over. The pain then went from the right side to both sides mostly in the shoulder chest area and hip area. I tried every self care thing I could think of and only received minor temporary relief. I felt it was some sort of auto immune disease but my googling did not bring up what I had. My appointment with my doctor was 5 weeks out. I asked my doctor to run blood work to specifically check for inflammation . So when I saw her and we talked she was pretty positive it was poly myalgia rheumatica and that the only thing that could help was prednisone. She warned me that it could have some really bad side effects. When I researched PMR on Utube etc. I was amazed at how accurate that diagnosis was. She started me on 10 mg of prednisone and now about 10 months later I am on 4 mg I am hoping that with a very slow reduction I can get off of prednisone by February. I have also had to learn to pace myself by doing and then resting. When I push myself too long without rest I am glued to the couch for at least 2 days or longer. This sight has been a great resource and blessing. I do not know of anyone personally who has PMR so to read comments on this sight by people going through this has been so very beneficial. Thank you. Lana Phillips from Idaho USA age 74 and also of Scandinavian descent

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Hello @lanafromidaho, Welcome to Connect. I'm glad you found us! My PMR is currently in remission. I've had two occurrences. Both times I was started on 20 mg prednisone by my rheumatologist. The first time it took 3-1/2 years to taper off of prednisone. The second time around six years after my first bout ended, I made a few diet and lifestyle changes and was able to taper off of the prednisone in 1-1/2 years. Each of us are different and I think you really have to listen to your body and taper slowly as your body allows (little or no associated pain).

You might also find the following related discussions helpful:
-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
-- PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/
-- After PMR and return to good health: https://connect.mayoclinic.org/discussion/after-pmr-and-return-to-good-health/

One thing my rheumatologist recommended that helped me was to keep a daily pain log along with the dosage of prednisone I took that day. Do you keep a pain log?

REPLY
jabrown0407 | @jabrown0407 | Jul 18, 2022
In reply to @lanafromidaho "About a year ago I was pushing my self to what I referred to as my..." + (show)
@lanafromidaho

About a year ago I was pushing my self to what I referred to as my maximum stress level when my daughter who lives with us and has disabilities, went into the hospital. She pulls off oxygen masks, dives over the sides of hospital beds, bends her arm so that IV fluids are cut off etc. She is a very challenging patient. I was under extreme stress. The day we brought her home from the hospital I started aching all over. The pain then went from the right side to both sides mostly in the shoulder chest area and hip area. I tried every self care thing I could think of and only received minor temporary relief. I felt it was some sort of auto immune disease but my googling did not bring up what I had. My appointment with my doctor was 5 weeks out. I asked my doctor to run blood work to specifically check for inflammation . So when I saw her and we talked she was pretty positive it was poly myalgia rheumatica and that the only thing that could help was prednisone. She warned me that it could have some really bad side effects. When I researched PMR on Utube etc. I was amazed at how accurate that diagnosis was. She started me on 10 mg of prednisone and now about 10 months later I am on 4 mg I am hoping that with a very slow reduction I can get off of prednisone by February. I have also had to learn to pace myself by doing and then resting. When I push myself too long without rest I am glued to the couch for at least 2 days or longer. This sight has been a great resource and blessing. I do not know of anyone personally who has PMR so to read comments on this sight by people going through this has been so very beneficial. Thank you. Lana Phillips from Idaho USA age 74 and also of Scandinavian descent

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@lanafromidaho Glad you found this site. I was slow in finding it but it is a great source of wealth and humanness. Your journey is unique but all of us share the same problem and understand how challenging even little things can be. I wish you safe travels and know that when you do have a question try Searching this site. So much has been discussed that you might find just what you need in the Search results. It has worked for me several times.

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lanafromidaho | @lanafromidaho | Jul 18, 2022
In reply to @kmeikle1 "Thank you for your kind words. I, too, hope your GP can speed up the process..." + (show)
@kmeikle1

Thank you for your kind words. I, too, hope your GP can speed up the process AND provide prednisone relief in the interim. Also, it's not uncommon for a disease like PMR (and possibly many other chronic pain diseases) to be misunderstood by friends and family. Even for me, if someone shared they had back pain, I had limited empathy until I experienced back pain myself. Living with PMR for three years has increased my empathy significantly.

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Reading your comment about increased empathy connected with me. I never realized how exhausting dealing with pain was before I experienced PMR I also did not have enough sympathy for those who suffered from chronic fatigue Before the PMR hit I was silently a little bit proud of all that I was physically doing for a woman my age. And then PMR hit and was I ever humbled. I try to look at the positive side of the very challenging things we go through and what can be learned. I am thankful for the empathy and the humility that I have gained . I am also thankful that 10 mg of prednisone worked rapidly for me. Yes I have dealt with lots of side effects but I have been able to function and take care of my daughter and all that is important. Again I am thankful for this site

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3 replies
kmeikle1 | @kmeikle1 | Jul 18, 2022
In reply to @lanafromidaho "Reading your comment about increased empathy connected with me. I never realized how exhausting dealing with..." + (show)
@lanafromidaho

Reading your comment about increased empathy connected with me. I never realized how exhausting dealing with pain was before I experienced PMR I also did not have enough sympathy for those who suffered from chronic fatigue Before the PMR hit I was silently a little bit proud of all that I was physically doing for a woman my age. And then PMR hit and was I ever humbled. I try to look at the positive side of the very challenging things we go through and what can be learned. I am thankful for the empathy and the humility that I have gained . I am also thankful that 10 mg of prednisone worked rapidly for me. Yes I have dealt with lots of side effects but I have been able to function and take care of my daughter and all that is important. Again I am thankful for this site

Jump to this post

I could have written every word of your post. Thank you for sharing what you've learned. Hard lessons, but the best lessons seem to come through suffering.

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suetex | @suetex | Jul 18, 2022

Welcome to the Women of a certain age and of Northern European descent club. Do you feel like a poster child? I did. Really made me wonder why the first Rheumy didn't catch it. Sounds like you are doing everything right. Keep up the good work.

REPLY
Teri | @tsc | Jul 18, 2022
In reply to @lanafromidaho "About a year ago I was pushing my self to what I referred to as my..." + (show)
@lanafromidaho

About a year ago I was pushing my self to what I referred to as my maximum stress level when my daughter who lives with us and has disabilities, went into the hospital. She pulls off oxygen masks, dives over the sides of hospital beds, bends her arm so that IV fluids are cut off etc. She is a very challenging patient. I was under extreme stress. The day we brought her home from the hospital I started aching all over. The pain then went from the right side to both sides mostly in the shoulder chest area and hip area. I tried every self care thing I could think of and only received minor temporary relief. I felt it was some sort of auto immune disease but my googling did not bring up what I had. My appointment with my doctor was 5 weeks out. I asked my doctor to run blood work to specifically check for inflammation . So when I saw her and we talked she was pretty positive it was poly myalgia rheumatica and that the only thing that could help was prednisone. She warned me that it could have some really bad side effects. When I researched PMR on Utube etc. I was amazed at how accurate that diagnosis was. She started me on 10 mg of prednisone and now about 10 months later I am on 4 mg I am hoping that with a very slow reduction I can get off of prednisone by February. I have also had to learn to pace myself by doing and then resting. When I push myself too long without rest I am glued to the couch for at least 2 days or longer. This sight has been a great resource and blessing. I do not know of anyone personally who has PMR so to read comments on this sight by people going through this has been so very beneficial. Thank you. Lana Phillips from Idaho USA age 74 and also of Scandinavian descent

Jump to this post

Hi @lanafromidaho, thank you for sharing your story. Suffering with PMR is a one of a kind experience, nothing I will ever forget. I had it for a year and then graduated to the companion disorder Giant Cell Arteritis before being diagnosed. I was put on 40 mg of Prednisone last June and now am down to 2 mg with no major flareups so far. My PMR started a couple of days after I got tendonitis in my ankle. I'm the fourth person I know that has had Giant Cell Arteritis. My maternal aunt had it, my mother-in-law, and a friend's mother. I've read that PMR and GCA most often occur in people with Northern European ancestry, mine is 75% Southern European. I know that feeling of being glued to the couch - so best to pace yourself. All the best, Teri

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Teri | @tsc | Jul 18, 2022
In reply to @missy3134 "I felt better between 8-10 mg of Prednisone. I was on 20 mg for several months..." + (show)
@missy3134

I felt better between 8-10 mg of Prednisone. I was on 20 mg for several months before I started tapering down. Last week I went from 6mg & 7mg on alternate days down to 5 mg. I feel a big difference. I am also taking 200mg Hydroxychloroquine. I am not getting pain relief but I have only been on it for five days.

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I hope that it lessens your pain, @missy3134.

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patzmar | @patzmar | Jul 19, 2022
In reply to @lanafromidaho "Reading your comment about increased empathy connected with me. I never realized how exhausting dealing with..." + (show)
@lanafromidaho

Reading your comment about increased empathy connected with me. I never realized how exhausting dealing with pain was before I experienced PMR I also did not have enough sympathy for those who suffered from chronic fatigue Before the PMR hit I was silently a little bit proud of all that I was physically doing for a woman my age. And then PMR hit and was I ever humbled. I try to look at the positive side of the very challenging things we go through and what can be learned. I am thankful for the empathy and the humility that I have gained . I am also thankful that 10 mg of prednisone worked rapidly for me. Yes I have dealt with lots of side effects but I have been able to function and take care of my daughter and all that is important. Again I am thankful for this site

Jump to this post

My thoughts exactly!
When I think about the time lost, before my diagnosis and treatment, it seems like a bad dream. Prednisone does have its side effects but I am doing very well thankfully. Helping take care of a new grandchild is now a real joy. There were times I could barely get through the day.

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