Very tired and weak but off the Prednisone, normal?

[Ronswife]

Almost 4 years since starting PMR attack I am now off Prednisone and my RA thinks I look done. I felt like my adrenal gland finally woke up. Felt better off but now 2 weeks later I am dragging still. Of course I'm more active. My husband says it's because I haven't exercised much all these years. I have been going to pool therapy for many months now and exercise hard. My legs feel heavy and hips hurt. Sometimes just one side. I have osteoarthritis so it's so hard to judge. I'm 71 and want my 60s energy back. Any similar experiences or knowledge of post pmr?

[SheffieldJane]

Just that I have heard that it takes a good year to get back to normal. Don’t put too much pressure on yourself, you are doing the right things. When this virus is contained I’d get everything checked out. My arthritis has worsened over the years and my level of general fitness is low. Great that you are off the steroids!

[Ronswife in reply to SheffieldJane]

Thank you. I will be more patient with this recovery and strength building time.

[SnazzyD]

The adrenal system doesn’t usually just switch on like a light and keep working 100%, as far as I gather and have experienced. I’ve been pretty good but had a very stressful day which made me feel dreadful until I took 2mg and went to bed. I’m not expecting much for a year.

[Ronswife in reply to SnazzyD]

Thanks. I didn't know that.

[SnazzyD in reply to Ronswife]

Make sure you carry your steroid card for a year too. Have you had a Synacthen test done? When I had my first one at 4mg, I though I was doing quite well, but it was only so so when the result came out. Looking back I had lost sight of what normal actually is after feeling so rubbish for so long and what I had thought was pretty good wasn’t.

[Ronswife in reply to SnazzyD]

Yes . A few months ago and it was a bit off but not this month.

[Blearyeyed]

After getting to Club Zero PMR may no longer be active but your body is still weak and needs to restore it's strength and ability to work efficiently.

This Recovery Phase , especially after years on steroids , can last for a year and it's still important to Pace Yourself in the way you did , listen to your bodies needs , and gradually build up your activities and exercise.

If you do too much , too often, your body will feel under stress and you will feel Fatigue , Stiffness and various aches and pains. If you take it patiently and increase your body health with Diet , supplements ,Gentle Exercise , Relaxation and Hydration you may eventually feel like the 60 at 70 that you would like to be , but push too hard , and you will regularly feel 105. It's still a race won by the tortoise even when you are newly steroid free.

[Ronswife in reply to Blearyeyed]

Thanks for that. I'm doing a 3 month cleanse and nutrient rebuild. Because of the virus I've given up the pool but will walk everyday with your advice in mind.

[Celticrival]

I finished steriods last May/June and after the initial euphoria that I was 'better' I began to feel awful, tests and all fine and I sort of knew it wasn't a flare because ibruprofin would get the pain under control, I really thought that was how I was going to have to carry on living. I have struggled with severe shoulder pain and general achiness but at the moment, day by day I finally feel stronger again. So as everyone says it might take up to a year to get back to where you were and the important thing is to gradually up the excercise, those poor muscles have weakened badly with the steroids and pain and as we age take longer to repair, but hopefully repair and buld again they will for you.

[Ronswife in reply to Celticrival]

Okay. I will add acetaminophen and patience.

[Hidden]

Hi. I came off steroids at the end of January after 2 years. 2 months on I still feel tired. I think we need to build our stamina back up, I still have some pain but I’m assured my numbers are all in normal range. I’m not discharged yet and although that’s what I want I’m also glad that they are still monitoring me. On the brightside my hamster face is back to normal and I’m quite glad to see some wrinkles in my cheeks. Now there’s something I never thought I’d say !! Good luck to you for a continued recovery xx

[Ronswife in reply to Hidden]

Thank you

It is wonderful to feel even this good. Glad to know my pains are probably to be expected.

[DorsetLady PMRGCAuk volunteer]

Takes time - been there, done it, got the T-shirt.

Muscles are weaker and it can take up to a year for whole body to get back to “normal” from side effects of Pred.

Plus you are older at the end than you were at the beginning..... whether you like it or not you won’t be 60 again, but being 70 is pretty good.

[Ronswife in reply to DorsetLady]

Thank you. I have read of your great difficulties. I appreciate you help us even as you have become a survivor.