Low in energy and mood

[Pirnilla]

I have returned to 5 mg after a period of trying to get rid of back and hip pain with increasing my dose. It didn't help so my physiotherapist have me exercises and now I am actually quite all right in that sense. But my mind is so cluttered. I think it is adrenals not kicking in making me feel this way. I have experienced it in low dose before. So sad for me and my family. I just want to be in bed and in my head I would like to yell at anyone crossing my path. This to will pass but I really hate it.

[DorsetLady PMRGCAuk volunteer]

Can’t offer any help, but thinking of you - you will come through this 💐

[SnazzyD]

I sympathise. I almost felt as bad as high dose Pred but without the go juice. Muddled and sooo tired and many a time I’d be weeping over my daily tasks. It did get better but I did feel like it would never end, which is where you are I expect.

[Hidden]

Hi Pirnilla

I’ve been through that & still have phases of it, l’ve adopted coping strategies & have become good at ‘boxing off’ thoughts & ideas in my brain.

If doesn’t affect me or mine directly then, Park it or Forget it. Don’t watch the news or stress about things you cannot change.

I had Cognitive Impairment following Chemo & that was awful but l had to find a way to deal with it, you are correct that it’s lack of the adrenals working making it worse.

Explain to your family just how awful it is, l’m a very organised person & used to be able to ‘box off’ things in my brain & just deal with one ‘box’ at a time!

One of my favourite saying is “This affects me how?” It’s definitely worth a thought, allow your brain to rest, when l first had PMR l couldn’t bear the radio & l’m not so bothered with it now either. I listen to my favourite music to relax & clear my mind.

Another thing is if l’m watching TV & DH makes a comment, l have to pause the TV as l cannot concentrate on both things anymore.

I hope it improves for you soon 🌷🌷

Kind Regards

MrsN 🌷

[GOOD_GRIEF in reply to Hidden]

My version of that it "Who's gong to care in 100 years, and what can I do about it?"

If there's something I can do, I do it. If not, I leave it to others. And sometimes, the only thing I can do is be pleasantly annoying to others until they do what needs to be done.

[Blearyeyed in reply to Hidden]

Excellent advice for all of us suffering with Fatigue from one source of another , thanks , Mrs N 😘

[GOOD_GRIEF]

Honestly, try to get outside and take a bit of a walk if you can. A bit of physical activity seems to stimulate some of what's needed to clear the brain. A little fresh air and sunshine won't hurt either.

I know. It's the last thing you want to do. But once you do it, you feel a bit better.

[PMRCanada]

Sorry to hear of your challenges. When I would feel like you do, I WOULD go to bed, separating myself from others as to avoid snapping at them and making things worse. My OH respects my choice to take some space when I’m feeling ill and/or irritable, and our communicating about this practice ensures he does not worry that he’s done something wrong, or that I’m angry with him. Indeed it is a preventative measure that saves hurt feelings, guilt, etc, and he trusts that I know when I need rest given that I listen to my body/symptoms.

I/We worry about our moods, our symptoms and our relationships with others are we progress through this condition, however worry and stress negatively impact those of us with PMR/GCA. Sometimes open communication and creative adjustments help us navigate the rough waters. I’m learning that both me and my closest loved ones will survive, but at times, like you, I wonder at what cost.

I can’t offer much in advice about fatigue, but others in this forum who have a lived experience with it, might.

[SheffieldJane]

I know exactly how you feel. I am on 4.5mgs any job I do, I have one eye on my bed. I have made it a lovely peaceful space with pale green, slatted wooden shutters, the sun and air stream in and I’m bathed in a cool green light. My husband must be plotting to leave me, I am so unpleasant at present. How can one be so lonely and not fit to be with? This disease can be very hard at times. Take care! 🍀

[Daisy-daisy]

My hip pain, diagnosed as bursitis turned out to be a completely degenerated hip. After a horrendously painful few months after the hands of the failing NHS I'm to have a hip op. Moral of my story is I think prednisolone masked this. Despite repeated requests I was not xrayed. This would have at least revealed the true condition. If you haven't had a recent stay I would push for this.

[PMRpro Ambassador in reply to Daisy-daisy]

I can assure you that severe bursitis can cause as much pain as a hip needing replacment! That's why an x-ray is needed. I don't understand why GPs are so reluctant to send patients for one. 25 years ago the GP nearly killed my husband by diagnosing asthma on the basis of a reduced peak flow and a cough that didn't respond to 3 courses of 2 different antibiotics but not sending him for a chest x-ray at the hospital in town that he drove close to on his way to work in another hospital

[bunnymom]

When I begin to think unkind thoughts about people in my head (while standing in line for example) I know I'm not in a very good place. Emotions hop all around when I'm reducing but they do settle back down. We all hear about shoulder and hip pain but it effects us all over! Losing my brain has been one of the hardest. I can't figure things out very well. I love to strategize but can't do it now. It's getting better than early days but not there yet.

6.5 3 years 5 months

[daworm]

I actually thought I would feel much better when I got down to 5mg, I do in some ways but the lethargic days (especially mornings) and the return of all my OA pains at this lower dose isn’t fun....but..happy to be slowly dropping, just wish the moody lethargic days would end soon!! Forward we go!! Hey, summers been really nice so far!

[Blearyeyed]

I find jotting down things I need to remember to do or say in a diary helps when the Fatigue really cluttered my mind .

The family come in now and actually ask if I had anything to tell them , it definitely makes the day to day functions easier.

Don't feel too bad about it , forgetting to do or tell people things and having a disorganised mind means we are functioning like a pair of teenagers again!!😋

I have a traffic light system when I write down activities .

For things I really have to do it's red ( usually only doctors or ringing my Mum ) .

Yellow is things that must be done but could be put off a day or two or passed onto to someone else to deal with , if my brain isn't up to its best or it's something that will add stress ( like bills , problems to sort on the phone , bureaucratic nonesense) .

Green , as in its something I feel I want to do but could cancel even if it might make me feel a bit guilty ( like a day trip , or coffees out , or a function or party). Most things are green when you are trying to cope with Fatigue or brain Fog.

If your brain and body are tired trying to do it because you feel you should , or even want to, is often a big fail as you are so tired when you are there you don't enjoy it anyway , you can get moody or not join in properly , and everyone gets more worried about you , then you are bad the day after too .

When the Fatigue is upon you your are always better taking as much time as possible getting positive rest , relaxation , a little light exercise and eating what you can cope with.

I have been honest with my family about it now and don't feel guilty asking for my space or going for a rest when I need one.

They are happier too because although they have more practical chores to do they feel better than they did when they felt stressed worrying about me struggling or getting wound up.

Getting to that happy medium really helps the stress reduce and makes you less tired , so you can enjoy more activity with people without it affecting your mood.

Counting to ten is also helpful before reacting , I say, "Do they need shouting at or is it just the Fatigue ? " after a count . It works for me , most of the time , and helps reduce that extra tiredness you feel from feeling guilty about your mood around people.

Then when they do deserve a kick up the bum I know I can enjoy it.

Take care , as you say it will pass , unfortunately though , like a kidney stone it's a real pain until it does xxx

[Hidden]

Hi pirnilla, I just wondered how high a dose you went up to, for how long and how did you taper back to 5mg?

[Pirnilla in reply to Hidden]

I tried 7,5 first for 5 days, then 12,5 for another 5. No change in my back or hip, nothing. So my reumy and I decided for me to taper down again. I sent to 7,5 and stayed there for 2 weeks. Then 6,25 for another 2, then slowly down to 5 for 3 weeks.

[Hidden in reply to Pirnilla]

So 48days for a 7mg plus taper. I don't think my body would enjoy that. I am sure others may help but 12.5 for 5 days tells you nothing if you are really flaring I don't think. It just seems weird. If you had gone 5mg to 12.5 for 5days and dropped immediately it might not seem so "bad" but once you have been at bigger doses for a month surely you need to taper more gently? Other minds might process that more effectively than I can. 😁

[PMRpro Ambassador in reply to Pirnilla]

If you were only at 12.5mg for 5 days you could have dropped back to the previous dose immediately. No need for a taper at all. Or did I misunderstand?

[Hidden in reply to PMRpro]

That's what I was trying to process. It's just like the "normal " short burst for under a week so back to low dose. Surely once it's taken 3 to 4 weeks to get partially down to low dose then the need to taper is back in play?? It seems a round about way to try a higher dose.

[PMRpro Ambassador in reply to Hidden]

Up to 10 days or so you can try a higher dose and drop back without a taper if it doesn't make a difference. It never works to edge up the dose - add 5mg straight away, more if it is really bad. But however much it is, 5 days isn't enough to need to taper again.

[Pirnilla in reply to PMRpro]

This time I did what my reumy told me to do. She wanted me to go to 7.5 from alternating between 5 and 3,75 and when that didn’t help at all we tried 12.5. No change. Then she wanted me to do 7,5 for a month before tapering down again. There is obviously several ways of thinking about this, but I believe you are right PMRpro when you say I could have gode straight down to 12,5 again. Well, now I am back at 5, my hip is a lot better with physiotherapy exercises and I can’t say I have any PMR pain at all. Just this tapering blues...

[Hidden in reply to Pirnilla]

Hopefully those blues will disapate. 🌻