Sorry to be a pain and I have already posted this week about fatigue, I could do with some advice though please as I am feeling at a complete loss. I have had five straight days of overwhelming fatigue, have been almost consigned to the sofa, from lunchtime onwards, have paced myself with jobs etc. Eyes feel sort of achy and uncomfortable, no pain in temples or jaw although a strange sensation around my jaw at times. And headaches too. I’m on 15mg of pred, around 3-4 weeks in now. My pain/stiffness is much improved.
Should I be looking to increase the pred to address the fatigue? Thank you 😒
In my experience, although pred works well against the pain and stiffness, it does nothing for the fatigue. Like you, I'm going through a particularly bad phase of deathly fatigue at the moment. This morning I ironed two pillow cases, two aprons and a dress and had to take to the sofa for the afternoon and early evening. Only hunger roused me enough to move myself. Tomorrow I'm due to go to my daughter's for lunch to say goodbye to my granddaughter who's off to university the following day. I'm determined to go as the Mayor is requesting a new lockdown for London so it might be my last visit for a while. However I suspect I'll be having a long lie down after lunch and an Uber for the half-mile journey home.
Hello Marijo, it’s horrid isn’t it, makes you feel so unwell, and so good when you get a slight reprieve for an hour or so! Only to crash again!! It sounds like you have a good plan so as to be able manage your visit to your daughter’s tomorrow. I have been on leave this week and so hoping I feel better for work next week.... Hope you enjoy your day tomorrow and stay safe 🙂.
As I always say, I am full of admiration for those who suffer these ailments, yet manage to hold down a job. I'm retired so can suit myself how I use my time. I hope you get all the support and empathy you deserve from your work colleagues.
What sort of headaches? Where? And what do you mean by the strange sensation in the jaw?
Hmmm - but how many jobs did you pace through the morning?
More sort of pressure headaches, predominantly around my eyes, and not around the temples. And not jaw pain, but almost a sort of numbness at times around my jaw, teeth even. Well, I did help polish laminate flooring this morning, was light work really for an hour or so and that was me done. I am booking an eye test, as I feel it may be eye strain / too much screen time...
I see you are fairly newly diagnosed so my first thought is have you/are you overdoing it & l suspect that you are.
PMR is not an easy condition to manage & for me housework was totally out of the question. You need to take some ‘Me’ time & rest to allow the Prednisolone to work, taking additional Pred for fatigue though tempting is not the way forward, it’s possible 15mg may not be quite enough but if you are trying to carry on as normal you’re not really giving your body chance.
The Prednisolone only works on the inflammation but the actual condition.
Rest is the best & only way to deal with the fatigue.
I hope you have a good nights sleep & feel better in the morning.
Kind Regards
MrsN
PS l always take a rest on the bed as l find l relax more & you may benefit from that too.
Thank you Mrs N, it appears then that am likely expecting too much too soon from the treatment, trying to “carry on as normal” partly in defiance maybe and it is indeed a sharp reality check when my body says no 😕. It’s a lot to get used to. I do appreciate the empathy, support and advice on here.
Indulge yourself a little & rest, l improved slowly over several days & by the tenth day l was just like the ‘old me’ & l was back in charge but l wish l’d had this Group to advise me.....
It’s an odd feeling, it just comes from nowhere, wham & it’s like being hit with a bowling ball. You’ll adjust but it is very hard to accept.
It took me a while to realise defiance doesn't work with pmr, and that 'normal' has to be redefined. It's not giving in, more learning how to manage it. Not always achieved even after 8 yrs plus! At best - 1 part energy expanded 2 parts recovery.
Hi, sometimes I get up after a long good night of sleep, eat breakfast, and feel the need to nap!! Morning is usually my most active time. I don't know why and don't want you to assume I have great insight into this.
But when you mentioned your jaw, I just thought I would tell this. My jaw was bothering me. Rhuemy said it was not GCA and to see an ENT which I did. ENT said jaw was fine as were ears, nose & throat. He asked if I clenched my jaw & i said no.
But then I noticed that as I went about my day I would clench my jaw whenever I moved in a way that was painful. Bending, getting out of a chair, the first few steps, carrying something. And we still have pain with PMR even tho Pred helps wi most of it. Once realizing it, I was able to stop clenching, and my jaw pain went away.
Thanks DianeA1, I feel that my discomfort might be related to eye strain, have been working from home and constant screen use. The PMR makes me paranoid about everything!! Eye test booked!! 🙂
I had a couple of major flares & my Pred was increased for several weeks to very high doses & it affected my vision greatly.
I’m myopic/shortsighted anyway, l could only read without my glasses but middle distance was awful, ie Computer Screen, ironing (as if, 😉 l trained my left handed husband to do his own) but l couldn’t see to cook.....
I saw my Optician & they advised against changing my lenses as the Pred was obviously having an impact. So they made me up a pair of Middle Distance Glasses which l wore in & around the house but they were useless for TV but they solved the other problem & my eyes settled eventually as l got the Pred down.
So my advice is Do Get Your Eyes Tested but be mindful of rushing into a New General Prescription as Prednisolone does mess with your vision......
To add to MrsN's comments - I have a selection of old specs that I have used at various times during pred - moving them slightly up and down my nose to accommodate dose changes if it was something that needed that. Long distance is OK once I have adjusted to those specs after having the computer ones on - that can take several minutes, if not longer if I have been at the computer for too long.
Yes I’m trying to limit screen time (easier on non working days!). Today I’ve been to the shops (first time in ages!) and purchased a crochet needle and wool, needing a new sofa surfing hobby which doesn’t involve a screen !!! I haven’t a clue but will give it a go 🙂
I am kind of doubtful that this information I'm about to share would help anyone, but it sure helps me, so I still want to share it.
I have tons of food allergies and environmental allergies. Once in a while I find a need to take Benadryl. But it makes me sleepy for 2 days, even when I take 1/4 dose. So, I discovered that when I really need to take Benadryl, I also take a Caffeine tablet. I don't drink caffeinated stuff like sodas or coffee. But when I take the Caffeine tablet, the adverse effects of the Benadryl disappear and I can function normally again.
Like I said, maybe this only works for me, but I still wanted to share it in case someone can be helped by this story.
Have you heard about the spoon theory? You start each day with 12 spoons and use spoons throughout the day. If you use more than 12 today the extra are taken from tomorrow, so you start tomorrow with even less!
I too suffered from abominable fatigue and like MrsNails I suggest lying down on a bed properly. If I tried to rest sitting on a chair I found it was useless - I had to actually go to bed and try to sleep (and usually did, even if only for 20 mins) Invariably I did feel the benefit of that and used to do it every day, come what may. Slowly and gradually the fatigue for me has got much less and I hope it is the same for you, as I know how truly awful it can be.
Thank you Francesbarbara. That’s good news that your fatigue has improved. I’m sure mine will too over time. This forum provides a real comfort knowing that there other people who understand. I’m very grateful to have found this support group 😊
Almost 2 years after being diagnosed with PMR, I am down to 3mg of prednisone. I have never got over the afternoon fatigue. Now, I just accept it. In the morning I do as many small chores as possible, or take my dog to river park for an hour. After lunch I lie down, read, meditate etc. Sometimes when I rise I have another little burst of energy and do a few more jobs.
Hi Noosat, I’m slowly coming round to the way of acceptance too. And, like you I’m identifying a pattern to the fatigue. Ok first thing, crash around early afternoon and then generally a reprieve in the evenings for some reason. The reprieves are bliss!! Almost euphoric at the feeling of “normal”. 🙂
Hi Constance13, I guess “normal” wasn’t quite the appropriate word to have used... More so, reprieves in terms of “absence of symptoms”.... Whatever the case, and however short lived, I’ll take them 🙂😁
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