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PMR is my new diagnosis

Posted by @cyndee in Autoimmune Diseases, Jan 1, 2012

ok, now I know what I have, only it comes and goes. My pain migrates to neck from shoulders, and then down across my chest muscles- and when it hits there, I can hardly breathe, or move! I've pinpointed the flares to activity- for most people it would be NORMAL activity, like Christmas preparation, lifting and moving things, garden work, raking or pulling weeds- etc. I haven't been to the gym in months, afraid to do any exercises that may cause a flare. The doctor put me on Prednisone to help the recent attack, and did mention that some of her patients take a low dose on a daily basis, but I really don't want to start doing that yet. Is that where I'm heading though? I've had 2 recent flares in the last month and so afraid that it'll hit me like it did last yr where I couldn't move without crying, and sleeping was impossible. Is there any exercise I can do to strengthen my now flabby arm muscles without sending me into a flare? Do I have to be afraid now to rake leaves or vacumn my house? Isn't there any hope for this? I am so discouraged. Please share if you have any advice. Thanks.

Tags: polymyalgia, PMR


Posted by @nancestl, Jan 1, 2012

Hi I have had pmr for 6 months now and it seems to be getting worse. I'm taking low dosage of methethexate ( 5mg pr wk) and it doesn't seem to be doing much good. But my Dr says it takes several months to kick in. I am usually so stiff and sore exercise is very difficult. I am trying to do yoga and it helps quite a bit.I'm frustrated also...can't seem to get answers. hang in there. nancestl


Posted by @cyndee, Jan 5, 2012

Thankyou for replying. I was wondering if yoga would help at all, or hurt. Now, I think I'll try that soon. Also- I was wondering if getting a massage (gentle one!) would help - or hurt! Have you tried?Would love to try it but I'm afraid. Last night I woke up with foot and leg cramps alot- - immediately blamed the PMR but I know it's probably something else. (/) Thanks again for your reply and I do hope you feel better.


Posted by @nancestl, Jan 5, 2012

You're welcome.....I havn't tried a massage but I do think it would help.. I also have foot & let cramps. Don't know what the cause is but I try to do some stretching before I go to bed and also massage my feet with lotion before bed. Hang in there. thanks,


Posted by @cyndee, Jan 6, 2012

I wish I knew if the pain in my hip and back is from the herniated disc I have or the PMR, but I guess it really doesn't matter, it's there. Thanks again for replying. So, the foot and leg cramps you have too-- I'll try the stretching, and the massage. Thanks. The thing that's so frustrating with this is that any normal thing like raking leaves or sitting too long at the computer can bring on a flare in my shoulders and neck--- and I can tell that I'm going from an occasional flare to a daily thing. I'm almost out of prednisone and weaning down, and I am already hurting more. Thanks for letting me vent. Where is your worst pain? Does it limit you alot?


Posted by @nancestl, Jan 6, 2012

Hey Dyn-Dee...My worst pain used to be in my hips and knees but lately (2mos) it's been in my shoulders. The last couple of weeks it's in my wrists and hands...really difficult when it flares up.I'm not on dr didn't want to go down that road b/c it's so difficult to get off ( more aching as you reduce the dosage as you're experiencing). I'm only taking tylenol most of the time but I do occasionally take tramadol ( a non-narcotic pain reliever). On the BAD days I'm really limited...Oh, I forgot to mention, I am taking low doses of Methretrexate ...7mg's pr week. It takes several months to take effect and I've been on it since Oct and it's starting to help a that the BAD days aren't as often. This is a weird but awful disease. I keep trying to be optomistic and tell myself this is not terminal and others go through a lot of worse things...but it is really hard to live with. Praying for you.


Posted by @cyndee, Jan 9, 2012

Thanks. I'll pray for you too. I don't get on my email daily anymore so don't think I'm not appreciating your replies... ok? I do.
I have osteoarthritis all over too, so it's hard for me to tell what ache or pain comes from what. I do know it's going to rain all wk and I will be hurting more. Yesterday I put Christmas stuff away and was nervous the whole time about causing another flare. I think I'm going to try very slow stretches each day because I feel like my muscles are turning to mush, afraid to use them. Want to join a yoga class but afraid of that too-- and I haven't been to the gym in mths. The Dr. told me not to use the treadmill b/c of my disc problem, but again, afraid to use anything else too. I tried a massage seat recently, and it didn't cause a flare so maybe... I just know I have to get to work (I work on and off my feet in a school) so I'm "too" carefull at times. Do you work?


Posted by @nancestl, Jan 16, 2012

Hi, Sorry I've not replied for awhile....I had a very bad week last week....was in bed for 2 days with pain. Finally got going somewhat on Wed. I also feel like my muscles are turning to mush!...Did I mention I'm having Knee replacement surgery in a couple weeks...the 26th. I'm really ready to get it repaired but am nervous about the PMR acting up. Oh well, I don't really have a choice so I just need to be brave! No, I don't work.....I was a teacher until this year and retired. I sure do miss the kids and others I worked with but I just couldn't commit to a whole year with this health thing going on. lucky I'm on Soc. Sec & Medicare I guess. Don't worry about exercising too dr said to do what you feel like doing...even just a stroll around the block is helpful... Have a good week.


Posted by @cyndee, Feb 6, 2012

Sorry - I haven't been online for quite a while and just saw this. I am wondering how you are doing since the surgery. I will say a prayer for you.
I work at a middle school, a para educator with autism. So far, I can do it. I hope I can continue til I'm able to collect soc. security. I am having new tests done now -- cking me for Chrones and other things--- never ending problems. I will try to ck back and see how you are. If you don't hear from me, don't worry, I will write --- do you have fb? Sometimes I only have time for that and don't get to my emails as much. Hope you are recovering nicely. Boy, that sure is NO fun. Again, prayers are being said. :-)


Posted by @paulaosh, May 31, 2012

I really would like to hear from others. My husband has polymyalgia Rheumatica and because he is also diabetic and currently on at-home, overnight peritoneal dialysis, his doctors (in the Oshkosh WI area) took him off Prednisone. He is now experiencing a flare-up and in quite a bit of discomfort but the Prednisone will wreak havoc with his glucose levels, especially now that he's getting the dextrose solution (2.5%) at night for the dialysis. Does anyone out there, doctor or patient, know of anything else besides Prednisone that helps the symptoms of poly-rheum? The only other options suggested were Percocet and Hydrocodone, which have the aceteminophen in them that harms the liver - not to mention he gets really loopy when taking those drugs. Any help would be appreciated! Thanks!!

Edited: 06/09/2016 @ 6:30am


Posted by @rolfandersen, Jul 24, 2012

I have had polymyalgia rheumatica since March 2011I was started on 10 mg of predisone for two weeks then increased to 20 mg for one month.I began tapering April 25 to 15 mg then 10 mg in May, from June 2011-June 30,2012 I tapered one mg per month until June 2012 to 0. After several weeks at 0 my wrists and knees began to ache
I went back to 5 mg July 8 and this corrected all aches & pains I will again taper beginning in August 1 mg per month. @marshahj


Posted by @overthehill, Aug 24, 2012

I am interested in knowing what others have done regarding polymyalgia rheumatica and the use of prednisone. I am
currently off the prednisone and am wondering what withdrawal symptoms others may have experienced. I have had
some hot tingling in my hands and fingers and wonder if there could be a connection to the prednisone.


Posted by @learner, Oct 28, 2012

I am new to polymyalgia rheumatica, and hope to learn more.


Posted by @toodles, Dec 9, 2012

polymyalgia rheumatica..... Does anyone have this and what is done about it.

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