Do any of you feel so lousy some days that you feel like surely there must be something else wrong with you too? Then there's that friend who's advice is to just push through it???? Today is one of those days when I can hardly put one foot in front of another. Its hard to succumb to resting when there are things to be done in a timely fashion and others depend on you. The natural thinking of others, is that after a year "shouldn't you be better?" Is hard to explain to people and frankly I don't always have the energy to go into it. Sorry, I'm just having a crummy day.😃
Awful day: Do any of you feel so lousy some days... - PMRGCAuk
Awful day
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PMRpixie
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Hi Alison,
I know exactly what you mean!!! These are the days I think our body is telling us to rest. It takes an act of God for me to shower. And when I do, I'm usually putting on clean pajamas only to stay in for the day. It's a good thing I'm easily entertained. I try to find joy in simple things that don't require too much activity on days that are hard. I watch football, HGTV, On Demand movies, read books and magazines, brush the dogs, take warm baths, enjoy a hot cup of green tea, surf the Internet, do a couple loads of laundry, contemplate what the next chapter of my life might look like, and otherwise just lay low for the day. Here in Gig Harbor, Washington it's too rainy and cold to do much outside. And I figure my immune system is too compromised to hang out in movie theaters or other crowded places. So I just try to make the most of it at home these days.
I hope you just rest and take care this weekend! Hopefully, you'll have a better day tomorrow 😊.
beringer in reply to
When you have these bad days, do you feel like your head is full if air? That's the only way I know to describe the feeling. I only get it on really bad days. I've had gca pmr for over 2 years & am on a double dose of Actemra infusions once a month. Do we ever get over this? Do the Drs. Really know alot about our illness? Thanks.
Beringer. Well I'm sure they don't know nearly as much as the people on this forum because speaking from experience is much more credible. And... about the empty brain....Sometimes I struggle to finish a thought (much more than the normal aging thing) Can't remember what I was going to do etc. it's like I have to stop and try to really concentrate. That, of course takes time - every thing is slower these days because that thinking process used to be automatic. For me it's like driving through a thick fog that doesn't clear.😕
Alison, it could have been me writing your post. First, in this community you don't need to say sorry for telling us about miserable times. This community has been a godsend for me. I finally am having more good days than bad ones by far, but one still sneaks in which is just lousy once in awhile and unexpectedly. I just answer (good intentioned) people who ask how I am with "good, how are you" and direct it away from talking about me and trying to explain an "invisible illness", prednisone, GCA, why I look tired, etc., to them. It works. I taped a Theodore Roosevelt quote to my mirror, "Courage is not having the strength to go on, it is going on when you don't have the strength." Hang in there Alison, I didn't ever think it was going to get better, but it does bit by bit. And with this forum you are never alone.
I know how you feel Alison - listen to what your body is telling you. My sister in law told me to excercise more - I could hardly get out of bed never mind go for a good long walk ( a hobby i normally love) I still have good days and bad days and now accept it is out of my hands - tough though as certainly in our house Mum's especially are the linch pin of the family . One of the hardest things I had to do was to ask ( and get) was more help - the help was always the eg hooving, not when I asked for it but eventuallly , most frustrating! Be good for yourself and rest as much as you need.
Maxine x
Yes, often feel like something else going on, I'm 49 and have GCA, my head luckily not too bad usually, but has been hurting last week or so. Same as you, a year, and yeah, cos people can't 'see' that we are ill, they don't understand. Though am also 'probably' on the 'change', as saw doc cos was feeling so rubbish apart from GCA symptoms! Anyway, hope you feel better soon, and never apologise for having a crummy day :-)))
Thank you chockybuttons, as well as every one of you who are always so encouraging. Maybe this is what has been referred to as a flare up? Hard to sit down when everyone else is running around you - we are moving. But soon I can't help it and I collapse. Instead of the "day at a time" for me its a few minutes at a time. Begging for tomorrow to be better.
Hi Alison,
Moving! No wonder you are shattered! Worst thing ever. And so close to Christmas as well, it's a wonder you haven't taken to your bed!
Even when you think things are good, you get days like these. I've been a bit off colour this week, for no apparent reason- although I don't think the cold weather helps.
Tomorrow will be better, even if it takes a few days to be tomorrow!
Take care.
As always, Dorsetlady, thanks for lifting my spirits.
Ooh moving - very stressful time on it's own! Do a minute at a time, take it easy, do hope tomorrow better for you :-)))) x
Hi
I was told for years I had CFS as well as underactive thyroid.
GP advice was you need to push yourself a little more this was a new GP to the practice and after she asked me to tell me a little about myself .
Well I work 37 hours a week ,Divorced but have a grown up son living a home, Mum who lives around the corner from me who is mobility impaired and unable to go out unless taken in a wheelchair. Hobbies walking ,going to the theatre and pictures, spending time with family .
How did she expect me to push myself anymore .
Needless to say I made a complaint and received a apology .
The standing joke in our family is if I feel a bit low or tired family and friends understand and just look at me sternly and say well you know what to do.
And we say push yourself a bit more .
Which then has us laughing and after that I do feel a bit better just for having a good laugh.
I to feel like you today really sore and can hardly move
hopefully tomorrow will be better .
Best Wishes
Rose
Hi Rose,
One thing you certainly need with this problem is to retain a sense of humour! Well done you! Where do some of these GPs come from?
Hi DorsetLady
Hope you are well
This one came from Hungary but that is no excuse
I refuse to see her even for emergency appointment
The one good thing is we still have a laugh about it
Take Care
Rose
Really sorry to hear that Alisin, but, yes, it seems to be "par for the course" with pmr. For sure, in the past year, I have had days like that. I think that, when we have had some better days, we inevitably try to do more than we should, and the pmr just bites back, and tells you to behave and rest. Also, it sometimes seems to happen for no particular reason at all, which is very frustrating.
Someone said to my wife, not long ago, that he wished that "when he got to my age (75) he wished he looked like me, and could do all that I do". Little did he know!!! Pmr is so misleading for other people, who can have no idea what we are going through.
Have you got a copy of Kate Gilbert's book " Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide"? If not, then you can get it on Amazon relatively cheaply. It is an excellent and helpful read.
Good luck, and hope you feel a bit better today.
Thanks for the encouragement Charlie. I have this "interior laughter" that goes on when people tell me "well, you look good". Guess we all become good actors. Would love to return their comments with " well I feel like crap"
I don't though because I know they mean well. But really, what do they expect us to look like? Ha.
Yes - I like that reply Alison. Good to keep your sense of humour!
Cheers.
People usually say that I look good when I've actually think I'm looking like a 'bag of spanners' ! LOL!.....
PMRproAmbassador
If you stop and consider you will almost certainly realise that you have done even more in the last few days - on top of having done more over the last few weeks. It is your body telling you to calm down and give it a chance to catch up. It used to happen to me when skiing! I was very strict about how much I did to avoid these brick walls - I would have done my usual few runs and think, I'm feeling good today, just one more and I'll pack in for the morning. Only to hit the wall halfway down the run. As you'll appreciate - there is no-one else to get you to the bottom! And there's generally nowhere to sit other than in the middle of the piste on our mountain, very very wide joined up pistes!
Read and consider: butyoudontlooksick.com/arti...
Yes, pmrpro, that's true. The day before I had done fairly well. So maybe today was just "payback". I think I need a series of signs to wear. The first one would say " just give me a minute please!!" Second " just need a break" Third " no I'm not faking it!!!!" Ha ha. Like everyone says we all need a sense of humor. Have read all the books etc., just need friends and family to read them too. (Not going to happen). 😕
There is a DVD from the PMRGCA northeast of England group - you could put it on the TV when people are around??????
You really will find that doing things in smaller bites with short rests doing something else in between will enable you to achieve more in the day that just bashing on at whatever has to be done. Often even having a nap in the early afternoon will leave you able to get through to later in the day without having to play as much catch-up the next day.
Hi Alison
Well you are not alone, I also feel some days like I must have something else wrong with me and then you worry and I then find this has the effect of the dreaded PMR being worse.
I still feel it's a lonely condition and to the outside world and family and friends we look"normal". !!. Also like lots of illnesses we take medication, feel the benefits, however the drugs then give us issues to deal with.
Every day life is not easy without illness let along something that stops us in our tracks.
I've had to learn to listen to my body and increase meds when I have to and if after a week at work the weekend is PJ's and doing not much then so be it.
I've experienced recently high blood pressure, high eye pressure, headaches along with the weight gain, glorious moon face and a camel hump .....so don't you just love PMR 😈.
But I've been through lots in my 49yrs so this little devil wont beat me.
Hope you feel better soon 💐
Wooh66
Wow. Beautifully put!!!! I could identify with every single thing you said. THANKS. Btw - I have high eye pressure too. Haven't heard that very often. My ophthalmologist gave me a prescription for Bromonidine drops. It's reduced my inner occular pressure nicely. My eyes actually hurt. Much better now but my vision is blurry now because, of course, the prednisone makes cataracts grow. Grrrr
Yup - fairly common really. When you develop cataracts then it is often that they were already there and the pred accelerates their development - there are 2 different sorts. They are easily dealt with and - believe it or not - I would welcome cataracts! At present I wear glasses from getting out of bed until going back to bed otherwise I see nothing - at least if I had cataracts I could get away with just reading glasses!
However - unless the opthalmologist said there are cataracts, it could be dry eyes causing the trouble too. Artificial tears will help that - it isn't the pred, that's the PMR! And some people just get blurry vision with pred.
Yes pmrpro. Cataracts have been there but advancing very slow until the pmr and prednisone. I do find lubricating drops help but my problem is that due to the pmr/prednisone issues my vision constantly changes making my glass correction hard to keep current. Will probably have cataract surgery in the spring and hoping that helps some.
It will! You will not believe the difference!
Hi wooh66,
You sell PMR so well! Who wouldn't want it? And as for the side effects of Pred - an absolute must!
Sorry, run out of irony, and strength, must go for a lie down!
As I quoted in a previous post today, I think PMR & GCA sufferers motto should be one of my late husband's favourites "don't let the bas***ds grind you down" - or perhaps not!
Why not? Seems perfectly fair to me...
Like you I have 'moon face' and have almost doubled my body weight so when they people me struggling along on the crutches with the two broken femurs and a now disintegrating knee how on earth can they bring themselves to say "Gosh, you're looking well!" I know I look hideous, I have mirrors - although I try not to look in them - do they think they are cheering me up? Admittedly I have a prefect complexion - that's because my face is swollen with fluid. Goodness knows that it will look like it I ever come off the steroids.........like crumpled seersucker fabric I expect! I didn't anticipate the snow today, scary with the crutches.
Still, thanks to this forum we all keep laughing, even when it hurts......does the cold weather make pmr worse?
Hi there,
I don't think the cold helps things, although I expect some would disagree - Doctors probably! I've felt a bit more fatigued this week with it being colder. I suppose the body has to work a bit harder to keep us warm so no surprise really.
Guess you won't be out ice skating then? Shame! No me neither. Take care.
Ida-june - Gosh you make me smile. I have wardrobes in about 3 different sizes. Never mind the expense! At least I don't have to pay a psychiatrist because I have all of you 😉. Kidding aside, it's tough isn't it? I've never looked like this. Heading to Hawaii and am not sure how I can have any pride in my looks in a suit. I'm not a vain person but no one knows I haven't been eating like a horse to look like this 😥
It does for some people. Damp is probably worse - I'm fine with cold (a mere minus 13 today where we went for lunch, yes, MINUS) but when it is damp or windy I really know about it.
Alison, Glad I could make you smile just what we need sometimes.
I have drops too and these help with the occasional blur !
As they say what doesn't kill us makes us stronger.
My biggest problem beside the pains which generally I cope and learn to live with is probably the weight gain and moon face, not that I'm terrible vain its just these are physical things that I see every day and is the reminder that this nasty condition has control of.
Anyway take your rest and look after you 😊
Cutting carbs drastically may help the weight gain - just a suggestion. I lost 36lbs while still on pred. It is possible. Some people do well with a class but often they don't appreciate the problems with pred. Pred changes the way your body processes carbs so removing all unnecessary ones really can help.
Yes wooh66. I totally agree with you. I too am NOT a vain person either but feel that loss of who I was is depressing. I eat very little and watch every thing I do eat. Doesn't matter.. Hair falling out, fat face, that awful weight gain in the middle. Maybe we should throw away our mirrors. When I put on a swim suit to exercise it makes me very unhappy. Never have looked like this before.😕
Well its like your personality disappears a little isn't it. My partner gets really peed with me and says I am the same beautiful person to him inside and out. Love him ❤. I also had terrible hair loss at an alarming rate, luckily I had very thick hair, however my GP found I was B12 deficient and I had the course of jabs. Thankfully it stopped and 7 months later I still have new hair growth 💅. Might be worth having yours checked.
Hi Dorsetlady
Hope you are well. I think I might take PMR to Dragons den !! 😁.
Thanks PMRpro I am going to start this now all the festive period is done with, as they say carbs are all really ok if you burn them off and these days running marathons is not on the cards
Haha. Words to live by. "Push yourself a little more," wink, wink, nudge, nudge. "Tomorrow will be better, even if it takes a few days to be tomorrow." "You sell PMR so well, who wouldn't want it? And as for the side effects of Pred - an absolute must!" "...this little devil won't beat me." 
Not uncommon for me . I was diagnosed with PMR approximately 10 mos ago....rxed with Prednisone initially 40mg ..quickly down to 15mg,now 5 to 6mg....without any significant residual myalgia after six mos....followed by sed. rates (now 4 to 6)....I follow myself at home with morning basal oral temps.(96.7 F initially..now 97.9 F.) FATIGUE is variable but usually is worse midday.... prednisone reduction plays a role... very hard to feel a hundred percent energenic, once the prednisone reaches 5 milligrams or less..... Since these feelings of enervation are entirely subjective it would be useful to have an endocrinologist might perform periodic saliva cortisol testing.... to see if there's any clear-cut correlation between subjective fatigue and adrenal function... bottom line : determine whether you have adrenal fatigue or any other cause for excessive fatiguability.... Unfortunately objective testing ultimately become necessary.
I have to say that I feel generally more tired these days than I did a few months ago. But perhaps the shorter days are partly to blame?
I've taken to saying that I am " good in parts" so as neither to confirm (moan) nor deny. For those not familiar with the curate's egg quotation:
" a timid-looking curate eating breakfast in his bishop's house.[4] The bishop says: "I'm afraid you've got a bad egg, Mr Jones." The curate replies, desperate not to offend his eminent host and ultimate employer: "Oh no, my Lord, I assure you that parts of it are excellent!" (This clearly cannot be true of a bad egg.)
Hey Allison, I'm sorry you are having such a rough patch in your PMR journey. If you take a quick look at the number of responses your posts generate, you will see that many, if not all, of us can identify with what you are experiencing.
My journey has been very like your's, and I am about 12 months ahead of you.
My message to you is absolute,..
You will get better.
You will make it through this very harsh time, and come out the other side.
You will find everyday activities getting easier....
You will have your life back...
Advice? Take naps, feed yourself comfort foods in moderation,
Treat yourself the way you would encourage a friend to do.
We can give others advice, but it's hard to hear that same for ourselves.
The members on this forum have walked the walk ahead and alongside you.
we are here day and night, understanding and sending enormous good energy to you.
Big hug to you,
Jerri
Purplecow
What a kindly and encouraging reply.
Thank you. I needed that and have
found I am certainly not alone. Every ones
help really does matter!
Blessings abundant everyone 💮
Alison
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