I've had PMR 4 years. Tapering from 6-5.5 mg pred. Have been overwhelmed by fatigue that hasn't been present for quite a while. This fatigue is not the leaden-legs -and -feet -type, but just general malaise.
My son died last week, ( not unexpected, but nonetheless...) I'm wondering if the emotional upset has contributed to the debilitating fatigue?!
Your thoughts are welcome. j
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It wouldn't surprise me. I've seen lots of people bereaved as well as myself and no matter how expected it is or a release or for the best, nothing prepares one for the finality, what was, what might have been and what can no longer be said or done. Every cell in your body will be feeling it. Time for some TLC.
So sorry to hear your news. It's still very traumatic even when it's not totally out of the blue...I know. I send you hugs as well.xx
As PMRpro says..mainly adrenals, and obviously not helped by recent events. I would stick at 6mg for the next few weeks, or even longer if necessary to get you through what will be a very difficult time.
Your reductions can wait awhile! Other more important things to think about. Take care.
Oh, my. I am so sorry for your loss, Purplecrow. The loss of a loved one is hard, and the loss of a child the hardest.
I think you can expect that you will have some feelings of malaise and disorientation for some time. That is totally normal. Your world has changed significantly, and you are adjusting to a new reality. That is exhausting for the perfectly healthy.
This is a time to lean on your friends, to let them help you, whether that's with the daily grind or just being close by. You've been a friend to so many here, and we're here for you. I'm sure you have many others much closer who will be wanting to help you however they can, who are just waiting for the cue from you.
I'm so sorry to hear of your loss. I know from experience that even when this news is expected, it doesn't make it any easier. My own loss was followed by the diagnosis of this illness so I truly know that it's very important to give yourself a lot of TLC. Please take lots of care of yourself and know that many of us are thinking of you at this sad time.
Dear Purplecrow, I am so sorry for your loss. And even though expected it will have caused you deep shock and sorrow. I lost my partner three months ago, after many weeks in hospital. I deliberately increased my pred from 7.5 to 10mg for the whole of that time and am only now starting to come down again. I have the most debilitating fatigue most of the time, and only in the last few days have noticed a slight improvement, mostly, I think, because I forced myself to go out to a favourite place to walk for an hour, very slowly, with two sticks...I seem to feel better mentally, which helps!
I do hope your fatigue lessens soon. Meanwhile try to be kind to yourself, and if possible, let nature help.
Dear Purplecrow .... Everyone here has expressed so well to you my own thoughts and feelings concerning the most devastating loss of your son. My heart truly goes out to you ๐ .
I just want to add my sympathies going out to you and, although we all say "look after yourself," I also know that most of us are very good at thinking that we are being good to ourselves when, actually it takes more effort to do this . Most of us have looked after others much better than ourselves in the past and this may be what led to our diagnoses. So, it needs a special effort to imagine what this really means and perhaps write down how you are going to take care of yourself and how you are going to allow yourself to feel whatever feelings come and what you are going to do with those feelings. If you need extra help with your feelings, then you are allowed to ask for it, whether that be bereavement counselling, the church, a special friend etc.
As far as I understand it, because our adrenals are not working and the pred. has taken them over, but has not the facility to react to extra stress the way our adrenals would, we have much less capacity for this than we would have normally, which means that we do have to take special care.
I can only imagine how hard this must be for you, so I truly mean it when I say "take care". X
So very sorry to hear your devastating news, nothing anyone can say to alleviate the grief except that you know this virtual family has you in their hearts.
~Dear Purplecow - may you be surrounded and nurtured by the loving sympathy from us all.
Our hearts and our heads are never on the same page, even if we think we are prepared.
As Dorset Lady suggests, staying at 6mg for a while longer (as long as it takes as PMRpro would say), would be a wise consideration whilst processing your grief journey.
Abundant blessings & special thoughts of you in the days ahead ~
Oh God! Purplecrow of course the emotional upset has triggered the malaise you feel. I am really sorry that you lost your son, so, so sorry. I was lying in bed thinking what's the point? My daughter, husband and grandchildren have gone to live in Australia for at least a year, in the air as we speak. Then I read your post, cried and felt ashamed. I'm going for a shower now, life must go on.
Please accept my heartfelt condolences. Take as much Pred as you need to relieve pain and rest since your mind, body and soul are in shock. May the comforting actions of others provide love at this difficult time. My thoughts and prayers are with you.
I'm not surprised that, however expected, your loss has taken it out of you. I'm so so sorry to hear of it. Combining this with pred reduction doesn't sound like a good idea at all.
So incredibly sorry to hear about your son Purplecow. How devastating to have to say goodbye to a child. No wonder you are suffering. My sincere sympathy.
I would certainly be staying at 6 mg as suggested. In fact, I would probably be considering an increase to contend with what has to be one of the most stressful situations for a loving Mother to experience.
I hope you have supportive friends and loved ones giving you lots of supportive hugs. All I can do is send virtual hugs. Take care. OOOOOOO
I am so sorry for the loss of your son...this has been a shock to your body as well as your mind so please..just go with it. Grief affects all of us in different ways and so please greave in your own way and be kind to yourself...sending big hugs
I am so sorry about the loss of your son. Such tremendous grief. How could anyone make enough cortisol to help with that. You must be devastated. I hope you have the ability and circumstance to do whatever you need to manage at this time. Thoughts and prayers for you๐๐ป If it is necessary to up the prednisone I would do it๐
I'm sorry to hear that you have lost your son, it matter what the illness was its still a very hard time for you. My sympathy and thoughts are with you. Give yourself plenty of TLC and take care
Oh, I am so sorry for your loss! My deepest sympathies and huge hugs go out to you. I am not surprised with your fatigue during this time. Yes, like everyone has said have lots of self-compassion during this time. Rest if you are tired. I have been finding meditation to help me along with listening to Ted Talks. I am sure they have the topic of dealing with grief that may be helpful. I wish you peace and a return of energy and joy in your life. Hugs.
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