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

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.

Hi Lizzier, What you are doing is great and you are working with people at the pool who are aware of their responsibilities to provide reasonable modifications under the Americans with Disabilities Act. (I was our County's ADA Coordinator for 13+ years). I think you should ask for the other accommodations. Maybe meet with the person(s) coordinating the modifications, even request a walkthrough with the person, to show exactly where you are having difficulties and what would make it easier for you. If the accessible parking is a problem, is there another space you could use that would work better? Could it be reserved for you? And presenting your pass at the pool seems reasonable. And try your rollator - there shouldn't be a problem taking it with you. Also, I'm wondering if there are any agencies in your community for seniors or persons with disabilities that could provide you with a personal assistant to help you at the pool. It might be worth looking into.
Let the people you're working with know how appreciative you are of their responsiveness to your requests and consider writing a letter to express your thanks. Even though they're doing what they're supposed to do, thanks is always welcome. In my experience, many people made unreasonable demands and were rude. I still had to work with them, but it was often stressful. Good luck!

Thanks so much for your encouragement. the parking is OK. It's when I get inside the building. I have a long corridor where I have to go to get to the check in desk. If I could just present my pool pass at the pool half way up it would save many steps. I have been very gracious to the pool director, so he knows how much I appreciated his effort, but maybe I'll just ask about presenting the pass at the pool instead of taking that long hallway down, then I just turn back about half way again back down the corridor. Thank you. I will ask him. I just don't want to be pushy, but I do want to get my needs met.

That's a great idea for the Exercise Group. Walking when manageable is always good and it's weight bearing, helpful for anyone on steroids. I think we need to be aware of what particular exercises stress certain body parts, can cause pain and flareups. It's probably trial and error, but best not to push too hard as a general rule. I used to do a fair bit of strength training with weights, and just started back with some gentle movement first (no weights), then 1 lb. weights. At this pint, 3 lb. weights are too heavy. If it hurts, I don't do it. I put down the weight and do the movement without it. Also, I just was diagnosed with osteoporosis. I've only been on prednisone a couple of months and already tapered down to half the dose I started at, but have all the risk factors for osteoporosis - race, build, family history, etc. Been doing Pilates for years and researching this topic, exercise and osteoporosis, found out that all the exercises that involve spinal flexion (C curves of the spine, like abdominal curls, forward and side stretching of the torso from the waist ) can cause silent compression fractures. Most Pilates exercises are out and many Yoga exercises as well. I'm meeting with a PT in a couple of weeks to get an exercise program that will be safe.

I'm sure you're very gracious. Just let the Director know how the long walk to show your pass taxes your strength and curtails your use and enjoyment of the pool. Often, people who do not have disabilities have no idea of what those who do go through. I had no idea of what chronic pain was like until I got PMR. I've had other surgeries and injuries, but nothing compares to PMR or GCA!

Hi ann55, PMR and GCA are inflammatory disorders. The steroids help suppress the immune system which is overactive. I also read that carpal tunnel syndrome can result from PMR. Since you're typing, have you looked into a brace or support? It should not cut off your circulation, but it should keep your wrist at proper alignment. I had carpal tunnel before PMR started, went to Physical Therapy, got exercises and got rid of it.
For pain, I find an infrared heating pad gives some symptomatic relief (as the heat is supposed to go deeper). Also an infrared heat lamp helps.. Acetaminophen is recommended at the analgesic dose (2 x 325 mg) although I find one 500 mg works okay for me. No NSAIDS, like naproxen, etc. with prednisone if you're taking it. And if you have difficulty sleeping, avoid melatonin, as it aggravates autoimmune disorders.
I also broke down and invested in an electric can opener as using the manual one was aggravating my shoulder. And a bidet toilet seat cover because attending to personal hygiene was getting so difficult.
I've found though that nothing relieved the extraordinary pain I was experiencing with PMR and GCA like prednisone. I hope that helps.

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.

Hi tsc,
You have provided some good suggestions especially the brace or support and I will definitely look into that. Thanks

Here's how to start a new discussion:

1. Go to the PMR group https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/
2. Click "Start a Discussion"
3. Enter a title and your message.
4. Click POST DISCUSSION

Thanks for doing this!

Hi ann55, I checked my braces and supports. I had one for typing, which was small and flexible and fit around the hand. I had another for sleeping with cushioning beads that was a wrist brace. Good luck.