Feel awful today! So tired, sore, irritatable, ca... - PMRGCAuk

PMRGCAuk

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Feel awful today! So tired, sore, irritatable, can't stand noise, could cry!! Few good days there, now paying for it, 20mg pred,

Abigail1 profile image
12 Replies

Is this how everybody else feels?

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Abigail1 profile image
Abigail1
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trish29 profile image
trish29

Hi Abigail1. Sorry you are having a bad time. We all get bad days and they often happen to me if I overdo things on the good days ..are you on 20mg pred for PMR on its own or do you have GCA as well? Are you decreasing on steroids as well ? I had some tearful days last week ..so much to do before Christmas - there seems to be such pressure to get things done and the tiredness is constant.. I know my body and my mind only react to rest ..I make myself rest in the afternoons but it does spoil the routine of the day. You mention soreness ,is this in the body or your head.. It wouldn't hurt to give your GP a ring and mention how you are to. Him/her.. Hope you feel better soon trish29

Abigail1 profile image
Abigail1 in reply to trish29

Thanks Trisha, feeling sorry for myself today, can't get used to having this. Yes I have gca, been on 20mg for about 2months, down from 50mg. Soreness is mainly my left side today an headachy.

PMRpro profile image
PMRproAmbassador

Although there are many doctors who will try to tell you that when you are on pred you are "back to normal" - it is rubbish! They haven't been there!

Being on pred allows you to manage your illness - it doesn't cure it and you have to do your bit too. If you have a good day and do all sorts of things you will suffer later. If, on the other hand, you learn acceptance and accommodate your illness you will, in the end, have a far better quality of life. I am not saying "give in" - I am saying "be graceful" in the very old-fashioned way. The most important thing in any chronic illness is to learn to pace yourself - and when you accept that and learn to do it you will achieve far more in the long run and not end up feeling so ill that you can achieve nothing useful and - into the bargain - make yourself downright unpopular with the people with whom you come into contact.

Instead of looking at what you can't do - see things from the other side: pred is not nice, we know that, but without it you would more than likely be blind. Try to imagine what THAT would mean. You would be unable to do many of the things you take for granted now.

Google "the spoon theory" and see how to manage your spoons. Instead of regarding the afternoon rest as an inconvenience - use it profitably. It is an inconvenience if you see it that way - or it is the means to allow a pleasant and useful evening. It is something I have rarely needed - but there are a load of things I had to give up and in many ways I'd rather have had a couple of hours rest in the afternoon than lose them. It wasn't an option though.

There is a blog called "Despite Lupus" where a young woman writes who was diagnosed with lupus shortly after getting married. For the first years she fought tooth and nail to retain what she had had before. Once she learnt to live with her life-long illness she has been able to achieve a lot - setting up a business and writing a book to help others. I recommend a read.

Abigail1 profile image
Abigail1 in reply to PMRpro

Thank-you pmrpro, I have read the spoons story, and have down loaded , despite lupus, the spoon story is good, it is a story I think I will read a few times. Looking forward to reading despite lupus,

Hi Abigail1,

I think there are lots of us on this forum who know how you feel, sometimes you just need to let off steam amongst like minded people who understand.

Although you know you have a chronic long term condition it's all too easy to get your hopes up on good days and then pay for it a few days later.

The psychological effects of illness can be just as disabling as the physical. I don't have a definitive diagnosis after 18 months of illness and have recently accepted a referral to a psychologist to help me deal with that. I mention this to let you know that most people struggle in their own way.

This forum can be a great way to voice your frustrations as well as a source of information. We all have days where we feel sorry for ourselves, it's allowed. Be kind to yourself and don't give up hope.

Best wishes

Keyes

Abigail1 profile image
Abigail1 in reply to

Thank-you Keyes, it's gonna take a bit of getting used too, just can't get my head round the fact that I am actually ill!! And that it is long term, possible permanent. Suppose over time I will.

Dovelady profile image
Dovelady

Hi Abigail,

I can so identify with you, I was diagnosed with PMR and GCA in April, came down from 60mg and now on 10 mg, have had ups and downs on the way. This week I decided to start getting to Christmas decorations up really early so I could pace myself and I guess I have overdone it again. Today my lower back is so sore, I have shooting pains down my legs and I woke with a horrible headache. I had plans to actually get out in the car for a short shopping trip today but doubt whether I have the energy to get upstairs again and get dressed. So today I will rest, spoil myself and not feel guilty and tomorrow will probably be better. As Keyes said Don't Give Up Hope.

Abigail1 profile image
Abigail1 in reply to Dovelady

You have just described me today!! Lol.. Hopefully tomorrow will be a better day!

optimist-ok profile image
optimist-ok in reply to Dovelady

From 60mg to 10mg in such a short time seems very quick! I was on 60mg just over 2 yrs ago (Nov) & am now down to 8mg this week. Had a couple of flares during that time but do feel much better at the moment! Take care, go slowly.

estherdevers profile image
estherdevers

I have got to get used to the yo yo situation. I know as soon as I get out of bed in the morning what type of day I will have, Not able to make forward plans as I never know how I am going to feel. Even mny good days are a struggle. Now on 15gm Pres, until I get down, maybe I will start to feel better, My rib cage back and lower back/legs prevent me from doing most things at the moment. Have to hang on the shopping trolly to get round the supermsrket. Not looking forward to Christmas, as I have not been able to do the normal rushing around and getting ready.

Hope you are feeling better soon-you are not alone!

trish29 profile image
trish29 in reply to estherdevers

Hello estherdevers.. I know exactly how you feel and how you explain your day.When you wake up in the morning you know what you want to do but your body and condition don't let you.. I have been to a PMR/GCA support Group Xmas meeting today and I got a lot of comfort for being with othersufferers , I to have been trying to cope with getting out there Xmas Shopping and writing Xmas cards when all I really want to do is rest.As you say forward planning is impossible . I am now on 14mg of prednisolone but I have been on Amitriptyline 10mg for about 5weeks now prescribed by my Rheumatologist and I am feeling a little better but the pain in lower spine is awful and legs.I amWaiting on MRI Scan results. You are never alone when you are on this Forum.. Hope you feel better soon and can enjoy your Christmas. Best wishes trish29

Badgergirl profile image
Badgergirl in reply to trish29

"You are never alone when you are on this Forum.. ". Just want to say thanks to everyone here. I have had so much support and don't know what I would have done without it. I saw PMR once called "the disease you cannot see" so we look completely normal and therefore perhaps only fellow sufferers can really understand what it is like.