1. < Polymyalgia Rheumatica (PMR)
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Weakness won't go away

Posted by LinaXYL @linaxyl, Sep 15 11:37am

I've been on methylprednisolone for 3 years and down to 6 mg without pain and tapering (again) down to hopefully 2 mg. I can't seem to get off the steroid without my levels going up again. In the past I've been so weak I could barely stand and I worked myself up to be able to exercise a bit and do most things again - just not too many in one day. Suddenly I'm very weak and having trouble walking and today I thought I was going to collapse when I vacuumed. I don't see my doctor until Nov. I guess I thought that once I got stronger again I would stay stronger. Will this weakness come and go or is it here permanently? I can't seem to get past it like I did before.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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dvorahberlin | @dvorahberlin | Sep 18 10:51am
In reply to @johnbishop "Hello @dvorahberlin, I see that you have already connected with another new member @danboldman and I..." + (show)
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Hello @dvorahberlin, I see that you have already connected with another new member @danboldman and I would like to welcome you both to Connect. There are quite a few members discussing fatigue with PMR but I thought you might both find this discussion helpful:
-- PMR and Fatigue. Interesting study: https://connect.mayoclinic.org/discussion/pmr-and-fatigue-interesting-study/

I registered for a webinar that is being hosted on YouTube tonight that I think could benefit a lot of us folks with PMR. Even though my PMR is in remission, I thought it would be interesting to learn more about the condition.

Polymyalgia Rheumatica: Closing Gaps in Diagnosis and Disease Monitoring, Thursday, September 18 at 6:30 PM Eastern - https://www.youtube.com/watch?v=j9kRz0aPVSc

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Hello @johnbishop
Thank you for reaching out and the link to the information. I am still struggling a little bit to figure out how to use this wonderful forum to connect with fellow ‘sufferers of PMR’ but makes me feel less anxious about this journey I am on now. yesterday I ended up in hospital with crazy high blood pressure and the doctor seemed very unaware about PMR in general. Here I already found some discussions on high blood pressure, which I actually never had in my life before.
I will check out the YouTube link , thank you very much

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linnead | @linnead | Sep 18 11:34am
In reply to @54pontiac "Same here. About 3 months after tapering off of prednisone, gelling in my buttocks, thighs, and..." + (show)
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Same here. About 3 months after tapering off of prednisone, gelling in my buttocks, thighs, and neck came back. But my arms and hands are normal. Getting up out of a chair is hard again, but once I get going I'm fine (gelling). The rheumy offered to put me back on 2 mg of prednisone, but I am resisting due to bone loss. I was hoping the change of seasons/ibuprofin/weight training would help, but nothing has changed. I'm going to give it a year of toughing it out. I am definitely better than before prednisone, but worse than being ON prednisone. Dilemma.

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It amazes me how deep the pain is, and that stretching, weights, walking, nothing lessens the pain. I am trying a gluten free diet. On day 6, no improvement yet. Fingers crossed. I tapered to 8 mg. All great for 3 weeks. Then boom! Pain back. Back to 12.5 mg and starting the taper again.

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marymckeith | @marymckeith | Sep 19 8:43pm
In reply to @edwardh "Same here, muscle strength but quickly fatigue and a lack of stamina. I have been off..." + (show)
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Same here, muscle strength but quickly fatigue and a lack of stamina. I have been off steroids for a year, but the fatigue lingers. My doctor told me to get used to it, that PMR is here to stay but rises and falls unpredictability. I toy with the urge to go back on Prednisone but am resisting it due to the negative side effects.

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@edwardh Identify with your comment. The weakness and stamina is a real issue with me and doctors don't seem to acknowledge it. Off prednisone for 6 months and don't want the side effects of it again but am so tempted. The extreme weariness has so altered my life and depression goes along with it.

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edwardh | @edwardh | Sep 20 7:09am

My endocrinologist thought an antidepressant might help with the fatigue, I have a lot of situational anxiety and some depression, it helps a little bit. And this study, posted by John Bishop, helped me understand post remission continuation of fatigue:

"Here is a recent study on fatigue associated with PMR. Seems we get it from the disease and from the treatment.
This is a quote"
"Fatigue is common in inflammatory conditions, but under-recognized in PMR. Fatigue severity at the time of diagnosis appears indicative of fatigue levels up to five years later and is associated with a broad range of health constructs at diagnosis and later." https://academic.oup.com/rheumatology/article/63/Supplement_1/keae163.226/7656165

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tweetypie13 | @tweetypie13 | Sep 20 5:38pm

For me fatigue was/is related to exhaustion with the struggle to move thru the day. Forgive the repeat, my Rehumy suggested Tylenol for Arthritis and it has been a great bandaid…..follow bottle instructions

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danboldman | @danboldman | Sep 22 10:54am
In reply to @dvorahberlin "Hi , I am new here. I am also on the tapering down and only got..." + (show)
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Hi , I am new here. I am also on the tapering down and only got diagnosed recently. Tomorrow starting 7.5 mg but the pain already came back at 10 mg and the fatigue is unbearable. I find the pain is going away somewhat during the day with some stretching exercises . The fatigue and feeling down about it all is hard to cope with

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Hey, I am 78 and really active but the lethargy from prednisone is, as you say, a real downer. My only advice is to fight it and do as much as physically possible. Hang in there.

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LinaXYL | @linaxyl | Sep 23 11:24pm

But aren't the pain and weakness and fatigue and depression, etc., signs that the inflammation level is flaring up and isn't that bad? It's not just pain, it's something wrong with your body. I know that the steroids are harmful but they seem to be the only thing that fights the inflammation. "Pushing through it" is like walking on a broken foot - you are causing damage to your body by not taking your prescribed medicine or by not having your foot put in a cast, as it were, and giving your body a chance to heal. I know it's difficult to deal with the ups and downs and to realize that just because you feel good one week does not mean you will feel good the week after that. But the pain is an indication of inflammation that is damaging our bodies and should not be ignored or tolerated or provoked = right?

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paul767 | @paul767 | Sep 24 8:13am
In reply to @tweetypie13 "For me fatigue was/is related to exhaustion with the struggle to move thru the day. Forgive..." + (show)
Profile picture for tweetypie13 @tweetypie13

For me fatigue was/is related to exhaustion with the struggle to move thru the day. Forgive the repeat, my Rehumy suggested Tylenol for Arthritis and it has been a great bandaid…..follow bottle instructions

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Yes Tylenol definitely helps me with the pain.
I take two extra strength capsules late morning and two more before i go to sleep around midnight. I was concerned that if taking the Tylenol with Prednisone would do more damage to my body. I checked with my liver specialist and she told me that taking no more than 4 Tylenol extra strength capsules a day is perfectly safe and will not harm my body. I even reached out to my pharmacist and they said the same thing, I was also told to stay away from Advil??

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paul767 | @paul767 | Sep 24 8:49am
In reply to @linaxyl "But aren't the pain and weakness and fatigue and depression, etc., signs that the inflammation level..." + (show)
Profile picture for LinaXYL @linaxyl

But aren't the pain and weakness and fatigue and depression, etc., signs that the inflammation level is flaring up and isn't that bad? It's not just pain, it's something wrong with your body. I know that the steroids are harmful but they seem to be the only thing that fights the inflammation. "Pushing through it" is like walking on a broken foot - you are causing damage to your body by not taking your prescribed medicine or by not having your foot put in a cast, as it were, and giving your body a chance to heal. I know it's difficult to deal with the ups and downs and to realize that just because you feel good one week does not mean you will feel good the week after that. But the pain is an indication of inflammation that is damaging our bodies and should not be ignored or tolerated or provoked = right?

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Well said, i am in total agreement with you.
I have recently found out that i am more susceptible to infections being on Prednisone. I'll be reaching out to my Rheumatologist and GP concerning. What i have found in the past is that if i have a question whether stupid or not i will ask.

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dvorahberlin | @dvorahberlin | Sep 24 9:06am
In reply to @danboldman "I am still on the weening down, 12.5 a day. Hips went back to pain and..." + (show)
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I am still on the weening down, 12.5 a day. Hips went back to pain and legs are numb. So so tired of the fatigue and mental crap. Anybody else feeling this way.

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Same with me. Also on 12.5 as of tomorrow. Had to go back up from 10 to 15 because I got such pain after the drop to 10.
I am incredibly fatigued and spend hours lying in bed during the day feeling exhausted. Only manage a short walk and a little housework each day. All that from an active life and walking 10 km each day. I guess we need to practice a lot of patience over the next 12 months. Stay strong

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