I am on 17.5 mg. I have a clear feeling that my adrenals are not working very well anymore. I have to deal with a dying mother in and out of hospital and not mentally well. At the same time my oldest son 24 lost his girlfriend, and that has put him in to a crisis where he needs help daily. He had Tourettes and after many steady years with no symptoms, he flairs with aggression and frustration and depression.
I used to be able to cope with all this but I can´t now. I feel like I have all these stress symptoms, tired, worn-out, agitated, cannot stay asleep, and low mood and sweating at night. Could it really be that it is due to the production of cortisone is too low to handle the stress? I cannot walk away from it but just needed to vent here - -
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krillemy
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I’m so sorry to hear your story, but at the level you are at, your adrenals will be “resting” - 17.5mg is way above the equivalent dose of cortisol your own body would produce naturally.
Unfortunately that means that on those occasions when your body goes into flight or fight situations, your adrenal glands do not produce the additional cortisol/adrenaline to help. This link explains it more fully -
As you are obviously very stressed at the moment, please be aware that your illness may flare, in fact it may be already, so maybe think about adding in a little extra Pred to help, and certainly don’t considering reducing. You may need to discuss with your doctor, and is there any way you can get additional help with both your mother and your son.
Thanks DorsetLady, also for the link. I definitely recognize the symptoms of too low cortisone levels, down to the stomach issues. My GP said that I could up the dose, but he would recommend that I stay on current dose if I want to taper, and try to poll through. My new moonface tells me to not go up, but I need the energy, so I just took an extra 2,5 mg we will see if it helps me through the day
I usually fell effect on energy and fatigue after 2 hours, but when you read about the takeup of prednisolone it should be in your system after jut ½ - 1 hours?
“take up of Pred” …like many things it varies from person to person and how YOUR body’s metabolism processes it -for some it’s takes longer than your 2hours…for others less..
I am so sorry to hear of all you are having to cope with on top of your own health issues. I know how dire the situation is in NI health services and if it's difficult to access your GP it may be worth looking outside the NHS.
If and when you feel up to it, have a look at this:
I hear you - so sorry. We share the t-shirt but you have a double whammy, I at least only had one to cope with.
I think you are right and although you have plenty of corticosteroid to deal with most things - and some to spare - when you should be getting spikes to cope with particular events they are not there. It happened to me even at 19mg for a time - especially dealing with official stuff now - but before my husband died the difficult events left me a quivering wreck at times. Occasionally there were physical effects - I ended up in the ED with a heart rate of 190 on the Sunday before he died, exhausted and overwhelmed due to one particularly inept (to be kind) local GP who had on-call duty. I also met my other nemesis on the ward that day - a ward junior doctor who told me to avoid stress! (I use the word junior advisedly, she proudly claimed she also had experience having worked in medicine for 20 years. She hasn't learned much in that time.
Is there no-one who can relieve you in any way? Even if it is just feeding you and taking on the mundane rubbish of daily living?
Thanks for sharing. I am sorry for your loss, but I guess sometimes it is also too hard to deal with other people's suffering when you cannot help them. I like the "just avoid stress" (!) Life happens to you and people rely on you. I guess I have been the family´s "big mamma". Just cannot do it anymore. My sister visits my mother today, so that helps. My son has stopped calling for the moment - I fear his actions, but he needs to stand on his own my husband says. It is is still AM, and took a glass of wine - does not help much though except the really bad conscious - I hope the 2,5 kicks in soon.
I just looked at the woman! She'd also decided I should stop my medication as it "obviously wasn't doing anything". Strangely, I thought it had done a very good job for the previous 6 years - and so do the cardiology specialists. She grudgingly said I could carry on if I liked! So generous. That one days of messed up meds took a few days to get over.
We do have to learn that a) we are not indispensable and b) we cannot be responsible for the problems of the world, even if it happens to be family sandwich we are the meat in the middle of that is involved. It is a hard lesson - and it never comes at a good time
It seems that you have enough on to challenge even a person whose adrenals are functioning perfectly. I don't know what you can do with Pred, but there are strategies for dealing with stressful situations. Breathing deeply is surprisingly helpful. Listening to a mediation tape, likewise. Watching something funny is always good. I know this sounds obvious; I have no original ideas, I just know how it is looking after a dying parent, so I feel your distress.
I recently discovered this stand-up comedian who has Tourettes, both you and your son may enjoy watching him (he probably knows about him already - Samuel J. Comroe). x
Yes - I have to remember the breathing. I do it at night, when I cannot go back to sleep. 4 in, hold 7 and 8 out.... Or yoga nidra, but in the daytime I need to do it also.
As I understand it, it’s not so much the steady amount of adrenaline, as the fact that the subtle fluctuations needed, cannot respond in crisis situations in the way they would naturally. I am so sorry that you are enduring so much testing stress. I hope that you have people you can gather about you and who can share some of the burden.. I sincerely hope this awful period passes soon. Please take as much rest as you are able. 🌺
I am so sorry for all your stress. As DorsetLady says your adrenals are resting. I think you are finding it difficult to deal with the stress because of the steroids that can really upset our hormones even when everything is going fine, so things can be really tough when taking steroids and we have problems.
I know - I am just exhausted from not being able to cope - and I easily forget the pain and the horrible symptoms I had before pred. as my husband and daughter remids my - I could not get out of the car on my own... could not walk more than 100 m ect.......
it is now 12.15 PM. I upped my dose at 10 AM with 5 mg. Also I startet antibiotics at 3 AM for a flair of diverticulitis’s. Now it has all liftet. The exhaustion and stifness and feeling the flu. Still Wael but I Can gave the day. My son callee and was better. I seriously do not know what did the trick, but My gues is the 22,5 pred. To deal with the infection 😅
A bit of all of it - the extra pred will have helped the diverticulitis and so will the abx. The extra pred will have had a Sick Day Rules boost too. And if you are flaring as a result of those factors - there as well.
Provided the PMR has gone into remission one can. Painkillers are really pretty useless for PMR though, steroids are really the inly things that works well.
So sorry you have all of this stress and worry going on in your life. Indeed, we cannot always selectively choose how things unfold, especially with those around us. I’m hoping you are able to at least get some respite and support from your situation. Does talking with your husband and sister help? Perhaps you could come up with a plan to get a break now and then so you are not constantly “on call”.
I feel your anguish as my mom, who I have only re-connected with a few years back, is no dealing with multiple cancers and a big operation on Sept 19th (lymph node removal and mastectomy). She is all alone in the US (Hawaii). My two aunts cannot travel to be with her, and when she asked me to come help her it crushed me to say I just couldn’t do it (the flights alone with transfer would be over 17 hours). I feel helpless and guilty. So I’ve talked with my therapist to alleviate some of the stress which we all know is bad for us PMR/GCA patients. I’ve given her a list of home nurses and told her to call or text anytime, but that’s about all I can do right now.
All this to say we can only do our best and hopefully find ways to address our stress along the way.
So sorry for you situation. I also have had a complicated relationship with my mom, but it gets to you when they lay there and need help. I do have a therapist, and I put my phone on silent for hours, but it is still hard. I hope my mom gets out of the hospital and into a nursing home, before she passes. We can only do so much - but this PMR is so debilitating
just chiming in to send you a virtual hug. 💐. I’m so sorry you are being bombarded with all this outside stress. Please give yourself a moment to stop…sit with a cup of tea…breathe…and let go of what you can…. We can only do what we can…even though our constant messages in life tell us we should be able to do it all…. Aint so!! Love to you, J
Oh I so feel for you. You have been given the best advice. My own situation is not too different. All I can add is to learn to say NO, refuse to feel guilty (guilt is a waste of precious energy), and, if you can, find a shoulder to cry on that is not someone involved in situation. All positive thoughts being sent xx
Is there a charitable body in Denmark that could offer your son (or you) some help if only in the form of a 'listening ear'?
If you were in the UK I would recommend that you (or he) contact Tourettes Action who offer a wide variety of help/support. But given the wonders of the Internet - I will recommend it anyway!
We do have an organisation here and was a member when he was a child. I never thought of taking that up again. He has almost no tics but was very bad as a child. It’s all the other stuff coming back because of crises. I take contact to them. Thanks !!
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- I hope the 2,5 kicks in soon. 
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