PMRGCAuk
7,091 members11,288 posts

Greetings

Responding to Kate Gilbert's request, whose book is very helpful.

Hi, I live in Iowa City and am 62. I was diagnosed in May after a month on not being able to figure out what was wrong, despite being a former professional ballet dancer and now, a Movement Therapist. Ha. I still work full time, which means moving a lot. In a way this is very good for me -- the movement helps, actually. My PC figured it out when I went it to try to get a muscle relaxant. First time in my life I haven't been able to move stiffness and pain out...I started on 20mg and am now down to 8mg. Except that I have started to have pain in my hands and that makes it hard to work. So, after 3 weeks of 8mg, today I tried 10 and it is working. So I may stay on 10 for a week and then taper to 9...and so on. I'm typical: 50% Norwegian, 45% English, 5% Russian. And I was under intense care taking stress for a whole year, and in hospitals a lot (virus?). I am a specialist in the role of emotions in chronic pain, so this is amusing and instructive when it is not frustrating and boring. Fatigue is my biggest bugaboo. Just a general lack of energy for much beyond my work day. I sleep well now that I don't take a little at night. At first my ESR was up to 120 and my platelet count also very high. While waiting for those labs I got a lot worse -- I couldn't walk at all in the am, or turn over. The funniest was when I had to use my nose to start my microwave. My son would help me get into and out of bed. I developed great hacks for sitting up using my yoga straps, and used my cane to grab the toilet paper. It was intense. So he started me at 20mg. I felt better in a day or two and went back to work. My ESR at next visit was 5, and my platelets were normal. Right now it's just my hands and hips. I was relieved to read that hands and wrists show up in PMR and are not RA. It does feel more like tendonitis than anything else. My hips feel like I gave a really great performance on a really big stage the night before. My PC said something that might be of interest to other dancers and athletes. When I told him that I didn't find the stiffness and pain too bad he reminded me that I have a tolerance for pain that came from dancing and that would go away with more dancing. That I shouldn't measure this pain, by that pain, because this pain is a marker of deep inflammation and that pain a simple slight bruising of the muscles. That was very helpful as I couldn't figure out how much pain was too much pain. Sometimes I still wonder, as pain is relative. Mostly I ignore it and get on with things. But I do rest more and do get more tired from mundane chores. So I give in and look at magazines and movies, and listen to podcasts instead of cleaning out closets or rearranging furniture. I have had to miss too many parties. But I am introverted so I manage that, too. It's hard to explain this to friends here as it is fairly rare. Or hidden. I know two women who have or had GCA but I haven't met anyone with straight on PMR. I am so glad I don't have GCA. I appreciate this forum and the advice on tapering. I have gone slowly and surely. Now I think I will try the dead slow method as I move past 8mg. I am out 10 months from the beginning.

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PS I have some very good ideas, I think, about appropriate ways to stretch and exercise for people with PMR -- and who are, perhaps, older. For starters, stretches should involve the whole body, and not just joints. Strength work should be eccentric stretching. Breath work helps with circulation. With this sort of breath and stretching one can get much pain relief and fascia release. I agree that Pilates reformer and Cadillac are good --- but they do not involve 360 turning. Turning and spiraling a la Feldenkrais help joints stay comfortable and articulate. Just rolling helps me!

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Welcome. I am sure that this forum will become an invaluable resource for you! You will find (as I have in the last 3 months) that the community is made up of smart, experienced, strong, brave, insightful people who will "have your back." I look forward to hearing how you get on.

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Thank you!

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Welcome to the community, mleginton! I, too, am 62, diagnosed in May (GCA/PMR) and am a neighbor (Nebraska). We’re glad to have you join us.

Your son didn’t happen to get a picture of you working the microwave with your nose, did he? I’m certain that was quite the sight. Ingenious on your part and I know when I go to use mine today I’ll reflect on your plight.

Glad to have you with us!

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And I rigged a yoga strap over my footboard because I couldn’t get my arms past my elbows and ran it up to my shoulders, pinned it to the bed. That way I could pull myself up in the morning... I slept up on pillows like Louis XIV. Once I got in the tub and couldn’t get out. Finally sort of came out like a seal. It’s a low tub. Ultimately it was funny.

Good to hear from you!

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OK I giggled. I admit it. Mental image of you ‘sealing’ out of the bath.

Hang onto your SOH, it certainly comes in handy.

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I wish he had. It was probably my worst morning though.

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Thank you for sharing mleginton. I found your story both familiar and inspirational. I look forward to hearing from you again.

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Welcome!

Have you also put this on your profile? That is where it will be useful in the future - there are so many posts that they tend to get lostbut your profile is always there.

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Yes, now I have -- a shorter version. Thanks for the reminder!

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