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

I was thinking of writing back to him, and doing just that, but didn't want to push for too much, and your little nudge pulled me along. I thanked him again for his assistance, and said that I did have one more ask. I explained the struggle, and explained what I needed. They were gone for the day, but I'll let you know how he responds. He's been so positive so far, so I have a good feeling about it. Thanks so much for the nudge. I do appreciate your suggestions.

This is a very interesting topic. And one to enter gingerly, I believe. I have started one program after another with poor success. I wanted to get back to my old exercise program which was a 3 or 4 times a week program including my stationary bike. I'd start off slow, adding as I went along, thinking I was doing well, and then I'd crash. All over pain, disappointment and frustration. My Rheumy never discussed exercise, so I would devise my own program, worked with Physical Therapy, thought I'd figure it out, and crash again. Then I found a Course through my local Adult Ed, called Living Well With Chronic Pain. It had a book involved, and it was done on zoom, remotely. I started the class, and it was a great class, done through a health agency. Unfortunately I had to give it up because I had to have emergency surgery. Another disappointment. When I began to feel better after surgery I perused the book again, and began these very simple exercises. I took the book to my Rheumy with me, and had him review the exercises, and he approved them, so I now do the simple exercises, that work very incrementally with these tiny steps, including weight bearing exercises. Not the program that I used to want. I just know that I have to move my body. I'm old as dirt (84) and this is not easy w/o guidance. Last week the local college pool opened, and we could reserve pool time, which I did. I got 6 sessions reserved for the remainder of the month. The pool was wonderful once I got into it, but accessing it was whole other story. Pretty much a disaster. Poor handicapped parking, long hallway to walk to get checked in, so I ended up too stressed to effectively work it out. They have a pool lift so they can get me into and out of the pool, the water was spotlessly clean, and the water temp was 82 degrees. All good. they only allow 6 people in the pool, and the day I went there were only 3 of us. It was heavenly to get into the water. They made huge concessions for me, but still not quite enough. They gave me a phone number to call to get into the pool eliminating one long walk, if I call ahead they open the 'secret' door for me, allowed me to do my soap and water shower, and hair washing ahead of time at home, but it was still very difficult. They were wonderful, but so far I'm still too limited to access the pool comfortably w/o being to tired when I got there, Not sure if I should give up, or ask for more accommodations, like accepting my pass right at the pool instead of having to check in at the desk which requires much more walking. I don't know if using my rollator would help. it would eliminate needing to carry my wet clothes back to the car, or asking if I can present my pass at the pool instead of trying to get to the desk for check-in or a combination of those two things. I'm trying but I don't want to be a nuisance. it was hugely stressful, but the 15 minutes in the pool were heavenly. I wore my bathing suit under a denim dress so that it eliminated changing, and took simple underclothing to wear under my dress to escape out the 'secret' door. I know it sound like a lot of work, but here determination is the word, w/o asking them to make too many accommodations. Boy that 15 minute swim was amazing. I was hoping to start small and work up, but not sure what more I can ask for w/o being a real p-i-t-a.

Hello all. I was just diagnosed with PMR one week ago and I’m still trying to wrap my head around it. On one hand I am extremely grateful to know what the heck was going wrong with me. On the other hand, The thought of living with this chronic disease worries me. You see, unlike most folks on this Site I am not even close to retirement and able to pace myself through this. I am currently 46 years old I have a whole lot of work ahead of me. Apparently I’m not the norm when it comes to the first onset of this disease. Wondering if anyone else out there was diagnosed at a young age as I was? Also a bit concerned With the prednisone side effects moving forward. Any info on this would be great. Thanks

So sorry to hear about your onset of PMR at such a young age. Hopefully with proper care and a younger healthier body you can work through this quicker. Yes you are hearing from a lot of older people like myself who have many other diseases and illnesses, combined with PMR. It can sound discouraging, but hopefully with youth on your side you can regain your health quicker. Do all of the things that we learned. Do moderate exercises. It's pretty much in your shoulders and hips, so perhaps a skilled physical therapist can help you to find an easier more effective exercise program. Eat healthy, give up sugary foods if you indulge. Look up foods on the internet that are anti-inflammatory. Stay connected to friends, isolating isn't a good idea. Ask for help when you feel overwhelmed. Ask questions and make sure you get the answers that you need. If it doesn't feel right, ask again. Get as much rest as possible, but that doesn't mean that you can't keep in touch with people. Watch a good movie with a pal. Be your own best advocate. In today's world you really need to advocate for yourself. The 15 minute doctor's appt. can't cover everything. When you see your doc have your questions written done, and get them answered before you leave your appt. If you forget something call back and say I forgot to ask this question can you explain it for me. The nurse will convey your question to your doc, and you will learn as you go. Keep as involved in your world as you can, and if you need to step back for short times do so, just don't withdraw. the very best to you on this new journey.

Prednisone can cause osteoporosis so I began by taking a good calcium supplement. I had an onslaught of muscle cramps after a few weeks of prednisone and started a Magnesium supplement which has helped a lot. I don’t have solutions for the other issues I’ve experienced but just wish you good luck on your journey.

So sorry to hear about your onset of PMR at such a young age. Hopefully with proper care and a younger healthier body you can work through this quicker. Yes you are hearing from a lot of older people like myself who have many other diseases and illnesses, combined with PMR. It can sound discouraging, but hopefully with youth on your side you can regain your health quicker. Do all of the things that we learned. Do moderate exercises. It's pretty much in your shoulders and hips, so perhaps a skilled physical therapist can help you to find an easier more effective exercise program. Eat healthy, give up sugary foods if you indulge. Look up foods on the internet that are anti-inflammatory. Stay connected to friends, isolating isn't a good idea. Ask for help when you feel overwhelmed. Ask questions and make sure you get the answers that you need. If it doesn't feel right, ask again. Get as much rest as possible, but that doesn't mean that you can't keep in touch with people. Watch a good movie with a pal. Be your own best advocate. In today's world you really need to advocate for yourself. The 15 minute doctor's appt. can't cover everything. When you see your doc have your questions written done, and get them answered before you leave your appt. If you forget something call back and say I forgot to ask this question can you explain it for me. The nurse will convey your question to your doc, and you will learn as you go. Keep as involved in your world as you can, and if you need to step back for short times do so, just don't withdraw. the very best to you on this new journey.

Hello all. I was just diagnosed with PMR one week ago and I’m still trying to wrap my head around it. On one hand I am extremely grateful to know what the heck was going wrong with me. On the other hand, The thought of living with this chronic disease worries me. You see, unlike most folks on this Site I am not even close to retirement and able to pace myself through this. I am currently 46 years old I have a whole lot of work ahead of me. Apparently I’m not the norm when it comes to the first onset of this disease. Wondering if anyone else out there was diagnosed at a young age as I was? Also a bit concerned With the prednisone side effects moving forward. Any info on this would be great. Thanks