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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
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
Replies to "About a year ago I was pushing my self to what I referred to as my..."
@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.
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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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?