1. < Polymyalgia Rheumatica (PMR)

Trouble being able to sleep more than 3-4 hours before

Posted by jeansg @jeansg, Jun 30 9:11pm

I was diagnosed with PMR October 2023 and had the symptoms since April 2023. Have been tapering off prednisone by .5mg every 2 weeks. Biggest problem is I can’t sleep more than 3-4 hours a night before waking up with the shoulder/neck pain and then try to sleep more sitting up in bed. Has anyone found pillows or any way to feel comfortable…can only sleep on my back
Jean G

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celia16 | @celia16 | Jul 5 9:48am
In reply to @jeansg "thanks for all your recommendations. Another question is whether anyone knows of specialists in PMR in..." + (show)
@jeansg

thanks for all your recommendations.
Another question is whether anyone knows of specialists in PMR in the Raleigh/Durham/Chapel hill NC area where Duke univ and University of Chapel hill are. Other names not as close also appreciated.
Jean

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I have an appointment with a Duke Rheumatologist in late August. Not for PMR. I got the appointment in November of last year! It was the earliest one available then. Due to my symptoms and rather urgent need for a consult for Sjogrens, I’ve tried to move it up. Can’t. So, I went about locating another Rheumatologist. OMG! Can’t get an appointment with anyone until after September. Several offices are permanently closed! Wake Med Rheumatology and ECU. I have no idea why. I called rheumatologists in Winston-Salem, but long appointment times. I didn’t check UNC since they are not in my insurance network. Good luck! There is a shortage of rheumatologists, apparently. My neurologist is helping with ordering my labs in prep for my upcoming visit.

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wfroslansky | @wfroslansky | Jul 6 3:38pm

I use lots of pillows. I side sleep so one between my knees, one under my head, one in front of me I throw my arm on top of. Smear on some arnica cream if something hurts at bedtime.

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lsmomasdaughter | @lsmomasdaughter | Jul 6 8:29pm
In reply to @jds2123 "Unfortunately I have similar difficulties in sleeping and occasionally have to take 1/2 of ambian to..." + (show)
@jds2123

Unfortunately I have similar difficulties in sleeping and occasionally have to take 1/2 of ambian to get 4-6 hours of sleep. I’ve tried melatonin with no benefit noted. Other recommendations are welcomed.

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How much melatonin? I had no results until I started taking 10 mg.

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megz | @megz | Jul 6 9:30pm
In reply to @lsmomasdaughter "How much melatonin? I had no results until I started taking 10 mg." + (show)
@lsmomasdaughter

How much melatonin? I had no results until I started taking 10 mg.

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10mg is a lot of melatonin. The body's natural production of melatonin is the equivalent of about 1mg or less. I started taking 2mg a night to compensate for loss of melatonin caused by a beta blocker. The pharmacist said to expect it to take a month or so to start working. I had to be patient, but he was right.

My doctor said to make sure to separate the small evening dose of prednisone and the melatonin by at least two hours. I was able to reduce the dose to 1mg after a few months, but am currently taking 2mg again since a flare and prednisone increase. I sleep well on that. Will reduce down to 1mg again when I'm able.

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