Unexplained severe fatigue without tapering .

Hello @spainishlady - There is a similar discussion that you might want to read through here:

-- Chronic Fatigue while tapering Prednisone for PMR:
https://connect.mayoclinic.org/discussion/chronic-fatiguewhile-tapering-prednisone-for-pmr/

Fatigue is actually one of the symptoms associated with PMR. I usually noticed it more so when I overdid some activity during the day and was really bothered by the fatigue the following day. Do you notice the fatigue following some activity or exercise?

Thanks for your reply John,
while I understand that fatigue is a symptom and it is a major one with me this was extreme .
But you are right I had been away for the weekend involving some cycling then was gardening the day I got home . It can really be the only explanation I suppose .
I am still battling and trying to come to terms with not being so active , it really is hard as you feel you are giving in, didn’t expect to feel like an old lady at 64 .
See the Rheumatologist is 3 weeks for the first time .
Need to own this blooming thing and learn to manage it better .

I know where you are coming from! I am 78, almost 79 and was very active and healthy prior to PMR. It is hard to come to terms with such a different me from who I was 6 months ago. Sometimes I feel like I don't know who I am.
However, I am also a realist, and the reality is that I just may have to deal with this for the rest of my life. I can do most of the things I need to do, just at a slower pace. Frustrating, at times, but doable, and I continue to push myself to be as active as possible.
I so appreciate this space which gives us a place to vent, to learn and to appreciate each other.

all i can say is ditto to your above message. I too am an active 77 (78 in 2 wks lol) I do pilates and walk a mile every day. That was then, this is now. I have tapered down to 1 now up to 5. i see my Rheum Thurs. The pain was so minimal when I was on 10-15mg pred. I hate taking med. My once thick hair is thining so much. These group discussions help.

i also feel my PMR was a result of Covid vaccine and boosters. any thoughts?

Your words resonate so deeply " I feel like I don't know who I am" .
I was just saying to my husband last night the same words.
Is this the new me or will I come out of this and be myself again?
Thank you for sharing!

there needs to b a class action suit.... i'm in
D

The "deathly fatigue" issue is something that many have trouble dealing with. We all were more active previously, to one degree or another and struggle adapting to the "new" person we've become. The best example I read once was:

We take prednisone to eliminate or reduce the inflammation & pain caused by PMR. The prednisone in part is very similar to the cortisol produced by our adrenal glands. Our adrenal glands sense that there's enough cortisol (prednisone) in our system, so they quit producing it whenever needed. That's okay until we try to do too much or work too hard and our supply of cortisol runs out for the day. The adrenals already sensed you had enough in your system so they aren't going to fire up and create more on a moments notice. Balancing how we exert ourselves can help avoid the fatigue but it'll likely not let us do things at the level we used to do things.

Once we successfully (and very, very gradually) reduce our prednisone down to zero, we still may face the challenge of "waking up" our adrenals again. They've been asleep for a long time and need to realize that they need to go to work again! The fatigue and exhaustion once again are mainly coming from the lack of cortisol/adrenaline/prednisone in your system. At least that's how it was explained to me and I feel it makes perfect sense.

I have had PMR for 6 years and at age 67 still work a full time job. However, I don't work at nearly the level that I used to. It's a constant challenge to pace myself and work at the level allowed. Push too hard and pay the price of total exhaustion. Reduce prednisone dose too quickly and pay the price both with increased inflammation and fatigue. Most of us will get down to zero prednisone someday and have normal functioning adrenals too. How we adjust to the "new us" will determine how long and comfortable the journey will be.

Hello ddmo,
Take a look at my story if u can. My PMR s/s started within 36 hrs of my 2nd Pfizer COVID Vac. Diagnosed almost 3 months later. 22 mnths later I still have it but down from 20mg to 7.5mg. My Dr's say it was undeniably brought on by my immune response to the vaccine. Best of luck to you!
Best,
Mary

This was a very helpful and comprehensive explanation!
Thank you! I am on 15 mg of prednisone and have had PMR since May 21 of this year. I tried tapering too quickly and had to go back on the full dose to get relief after three weeks.
I got relief immediately. Yesterday I went for a long walk and today I feel completely fatigued and sore even after my 15 mg.
I was diagnosed with breast cancer this past week and had surgery a Week ago today I am thinking the stress of all that is contributing to increased fatigue as well. I see a rheumatologist next week for the first time so I’m hopeful we can come up with a good tapering plan. I’m wondering if others are on any kind of adrenal Support supplement? Or have made dietary changes that help PMR.