I'm still on an early journey here with PMR diagnosis July and now on tapering pred.
I know there are others with far worse problems and my heart goes out to them, but I don't know where else to ask and get an honest answer.
I'm usually fairly quick witted; literally and in terms of understanding. Really struggling with fatigue. Tried to explain to GP that it's like living in and wading through physical sludge. Daily. She nodded with her 'understand but can't help' head.
That's bad enough, but now I'm wondering if mental capacity is affected by pred. Difficulty concentrating, even though I've little pain now, but worse, I struggled yesterday to understand the difference between diced and sliced. An onion, should have finely sliced but I chopped it up and couldn't get my head round the difference. I know the difference and it suddenly dropped into place today. My head just feels scrambled. I know I'm tired; not sleeping well but this is new within the last month, so I'm attributing to pred effect. Any thoughts please?
Cheers PMRPro. It's two steps forward and one back,sometimes. I can deal with better if I know what's going on, but this bloody disease just defies understanding. Seems I now have a stupid head every day!
Astral I thought I was doing this bit alone. I feel like a different head is on my shoulders and I am nervous. Let’s keep in touch. Has your situation got worse or better? Xxxx
Hi Daisy, been hoping you're making some progress. It's good to know this isn't unusual and I'm cheered by the hope it'll improve. My fuzzy head is worse over the last two weeks, which is why I'm attributing to meds rather than PMR. Take care
Hi Astral. THANK you so much. Your friendly words are just wonderful. I am not out of the dark yet so I won't lie. I am following you and hope we can both see better times very soon. xxx
Honestly Daisy - it is unlikely that anybody has got away without brain fog at some point, even if it was only for a short time. You definitely are not the only one!
Hi PMRpro. I am getting worried at how angry and cross I am too. I am glad I have a long appt set up for tomorrow as I do not feel my usual benign self. I have had several arguments with people which is unheard of for me. xxxxx Thank you xxx
Nor are you the only one to experience this. I actually developed an exceedingly short fuse with the PMR alone even without pred - when I am having a flare my language is pretty ripe and I fly off the handle at the slightest thing.
As you say - no answer. I've had a long time to get used to it but my memory and comprehension are almost as good as they ever were I think (others might disagree). It deteriorates if I have a flare or am over-tired. And recovers again.
Frustrating, isn't it, especially when as you say you are usually quick witted. You will find most of us here will identify with' brain fog '. My husband is one who goes into a lot of detail when explaining things and I find myself drifting which drives him mad.
As for fatigue, on bad days I just fall asleep ( twice today ) something I have never done before. It does mean that life has to be adapted to deal with it. Good luck to you.
Thanks scats. 'Drifting'...lol, think I'm developing apparently 'attentive' nodding. Not a clue about detail, but tending to agree. Grrrrr. Hope this clears soon.
The fatigue is overwhelming, but given the difficulties others are facing, it's nothing.
I've developed a different language...( 7 months PMR )....it consists of thingys, whatsits, doodahs, what ya call it and you know what I mean...I seem to have lost the ability to pluck the right words out of my brain ...they are in there but they don't want to come out..!..As for the fatigue I just give into it...not much choice really...However, as you say, there's a lot worse than me...Di
Me too!! For the life of me I can't pull forward the word I am wanting to say, and have now started relying on my other half to fill in the blanks for me. We have fun with it, and he enjoys games and is a real wordsmith so no bother for him as we try try to keep things light.
Fatigue has not been bad thus far, however I am retired and can usually nap whenever I want. I suspect once I get below 10mg the taper will become more challenging as will be the fatigue.
Oh Astral thank you so much. I am being so horrible to people I snapped at the Foxtel person and had a row with a girl in a shop. This is definitely affecting my mental health in that I am so short tempered. It is all confusing not knowing what is causing what. Is it a physiological thing or an effect on the brain? Oh well. Ultimately one has to just get through it whatever it is. xxxxx
Don't be so hard on yourself, you are enduring one hell of a hard time. Take care and be kind to yourself, you need all the positivity you can get, especially from self talk as we secretly all know we are the only person really worth listening to xxxxx
Oh you made me giggle. My husband does that too and I just haven't got the brain energy. In my head I'm going "oh please hurry". No offence meant to him - it's me!!
Funny the double standards they hold isn't it? When I want to talk about something his excuse is he knows nothing about it (implying "I couldn't care a sh*t") but if HE is telling me something to do with "The Book" that is nothing to do with me (he does science, I do technical editing) and is naming names of the people involved I am supposed to be absolutely au fait with it all. Doesn't help when the problems are being created by Chinese, Japanese and Korean contributors who all have very similar names - Li, Lee, Lui and in various combinations with equally similar given names...
I know what you mean, though it's a while since we did anything that intellectual. He seems unable to do anything without telling me in detail, all I care is that he has been gainfully occupied in the garden. If I did the same we would never get anything done, there wouldn't be time.
For some reason, when he buys a new machine I NEED to have the manual read to me from the Internet , yawn. When I suggest the damsons need picking or we will loose this years crop.....selective deafness!
My main dislike - details of bowl movements, please tell me I'm not alone in suffering this.
Must add to the last reply because I'm feeling guilty! It is in reality a small price to pay when he supports me so well. He is very understanding of the help I need with PMR.
On the other hand I did discover the guilty pleasure of complaining about him while he's still in the room
Hi Scats. I am “the sleeping woman”. I am Dozy Lil. I am Sleepy and Grumpy. I don’t like it. Where has Linda gone? I feel for Astral. It’s bad enough having this condition and all its variables x
I was getting ready to leave the house yesterday, paused and said" I feel like I'm forgetting something". My teen just started laughing at me. Apparently I say it a lot and actually forget more than I used to.
I couldn't work because of pred head. Total lack of concentration. Couldn't get words out. I got lost going to a place that I had been going to for 40 years. It does get better, or it did for me, as the dosage decreased. I am down from 80 to 6. I can read a book again, something I missed at higher doses. I am sleeping better. Thinking better. Not 100% there yet but I can now see the light at the end of the tunnel. Hang in there. It will get better!
Look on the bright side - you can read a book "in the minute" and enjoy it page by page and later you can go back and read it properly without being bored. After a few readings you will have got it all...
I'll get there; for reading, it's more like devouring. I used to get through half a dozen books a week, but when I finish one now, regardless of how long it takes, I take it as a plus.
I like audio books also. Trying to increase reading books but not where I was pre PMR. I joined a book club to force myself to read. The problem is the ladies chat about all things unrelated to the book. I wanted to strangle the annoying lady talking about her raspberry overflow! I left after 45 minutes. I’ll try another club...hope the chit chat will be more interesting. Tapering to 5.
Hello Astralsurfer,as Sheffield Jane has said,you have described Pred head perfectly,and it is something that l often experience.I also found that not sleeping well and feeling very tired makes it worse. I live on my own now and l have to admit l often talk to myself,to the birds in the garden and even the plants sometimes.l just hope l do not do that when l am with otherpeople, l think with me it,s a case of Mad head as well !
Oh Astral. I’m same. I Can’t do anything cerebral. Can’t think. Brain and body in overwhelming fatigue. What is it? Please update xxxxx
Hi Astralsurfer
I think it’s a combination of both the PMR & the Pred, at first you’re racked with pain, then that’s the overriding thought in your mind & you just can’t think about anything else, once you start the Pred it also can affect you, may make you the high side of normal (like Me) it depresses some people or generally make you fuddled!
You are not alone, Top Tip - don’t worry about it, it’ll settle, the more you worry the worse it’ll become!
Very Best Wishes
Mrs N 💅🏼
in reply to
Hadn't looked at it that way Mrs N. Makes sense. I'm learning to put a lot of frustration to one side and go with the flow. It's early days, so I'm not going to fight it. Sleepy, take a rest or nap. Thank you.
in reply to
It’s the fighting & trying to be ‘You’ that’s the hardest, you’re not well & rest, rest, rest is the best thing you can do at this point.
Sometimes a rest on the bed in an afternoon is good, not necessarily a sleep but your body is more supported & if you do dose off, so be it! 😴
There’s lots of help & support here & it can help you look at things in a different way sometimes.
Super tired. I have that. Fifty eight years old and have trouble remembering things ...Yes...dratted brain fog from Fibro, PMR, TCA. I seem scattered brained at times. I was a teacher and multi-tasked all day long. Now my stress tolerance is lower. I do 1 activity at a time. Just know you are not alone and others feel similar symptoms and empathize with you. I support you in your journey. It is a disease of adjustment.
I just tell people my medicine makes me forgetful and move on. That some days I may need to cancel plans if it is a bad day . I realize have an illness and give myself permission to just read and stay in bed.
A lot of long-timers mention pacing yourself and that helps me. One activity one day and a rest day the next. Some days it is just putting my laundry in and drying it... next day fold clothes. When better, a 15-20 minute walk with friends ...another day may be lunch. Some days I just feel sick...read all day or lay in bed. I am gentle with myself and say it is OK. I find small things that feed my soul.
I understand your concerns and frustrations. I think these are part of having an inflammatory disease. These have helped me, though some days I want to to kick these diseases the curb and walk away. Then I lift my head up and move on. Hugs to you.
I truly can't thank you and everyone else for all your shared experiences and words of encouragement. I can relate to so much. Because I look well, I think my OH thinks this illness is a breeze. I'm laughing off remarks like 'are you going senile?' which isn't helpful, but did make me wonder. Now I can deal with it. Thank you.
Hi your not alone I was diagnosed 2 months ago now on predicted and my brain is full of fog I forget lots of things and have resorted to leaving post it notes everywhere to remind me what am doing !! Hang on in there we all seem to be in the same boat I also need to have a sleep in the afternoon I call it my granny nap lol! Xx
I agree with you. Also the GP just nodding in agreement and cannot do anything or making cutting remarks like 'you are not the only one with PMR'. I know that but some positive remarks would be more helpful
Don’t ever be reticent in asking a question no matter how minor you may think it is compared to others. If it’s worrying you, then if you don’t ask and get a reply you’ll just keep worrying about it - and that’s no good for your nor your illness. Plus others may be suffering the same thing, so will be pleased you asked.
I think the others here have said it all, but just to add:
I've read somewhere that Auto-immune (Vascular?) diseases like PMR affect the Bio-chemical / hormonal balance in the Brain as well as the inter-connecting tissues to muscles etc (if I'm correct). And, of course, the Preds (like lots of other medications?) come with a host of warnings about possible side effects - including cognitive ones like mood swings, 'wooziness', etc etc. In some cases these can be quite dramatic, depending on the Patient's physical and mental health context.
So, my Conclusion? Probably a Conspiracy between the bio-chemical Auto-Immune component AND the Pred medication where Body and Mind can be affected quite dramatically. PMR is quite a serious health condition after all - and in many cases can only be managed successfully by some equally 'serious' medication.
And yep, Physical and Mental Fatigue of the Deathly Type that you describe - and its resulting effect on sleep quality, concentration etc (Brain Fog) - are also a well-known by-product of our types of illness and often have a knock-on effect in doing even simple everyday tasks.
As the others here suggest, a big (and important) part of coping with our types of illness is in learning to Pace ourselves mentally and physically (i.e. slow down!), Accepting that we can't necessarily change things (easier said than done), and 'Rolling with it' when we have bad days.
And.. finally: being aware that the Emotional Journey with chronic illnesses like PMR etc can be as challenging as the Medical one - especially for those, like you, who are at the start of what's often a long, unpredictable and frustrating health Journey that none of Us Lot invited or planned for!
Hope this helps - try to hang-on-in there and remember that you're in very good and trusted company here.
Yes MB, it's very helpful thank you. It's a steep learning curve, esp. the pacing when used to being on the go. I've cut the lawn this morning. My job of the day and I'm pleased. Normally I'd have done that, trimmed the hedges, maybe a spot of weeding...whatever needed doing. It's a huge mental adjustment. I don't think I considered it a serious illness; I do now. It's horrendous. And the support here is mind blowing and much appreciated. I've learned so much.
It certainly does all those things previously mentioned,and l find l really have to give it a lot of thought when it comes to arranging a day out, as l am never sure how l am going to be feeling . I am only on a low dose of Pred now but am still feeling far from my normal,pre PMR self.
I would be so frightened that I was getting Alzheimer's like my mother had but hearing that this brain fog was affecting most of us with PMR on this site reassures me that it's part of this awful disease that we have.
You've nailed it carol...I guess most of us don't have a baseline for ordinary day to day 'fog'. As we age, we almost expect to become a little forgetful. Then we wonder about the point where that poor memory function is abnormal...and why.
I'm genuinely encouraged that current experience is very, very common with PMR. Frankly, it's huge for each person because it's life changing. I'm disappointed, but not surprised, that medical recognition is at best, limited.
Just finished doing a 3 week run of Les miserables which has an interesting parallel to our thicko heads on pmr. Every night Jean Val Jean asks 'Who am I' so even he's not sure and doesn't have the issues we face.
Even when I thought I was having a good day today...it catches me out...been trying to contact my daughter this morning ringing her home phone from my home phone...couldn't understand why it was constantly engaged...I had only been ringing my own number...😨...oh well we had a good laugh about it...Di
Prior to diagnosis, I have just remembered the shame and panic I felt at work where one of my functions was to explain the Judicial process to vulnerable people, sometimes it felt so hard. Fortunately, the bite sized giving of information wrapped in love and support, seemed to suit them better too.
I started taking pred a month ago, I initially felt very tired and sick. My head felt clouded. Reduced now feel better, tapering. Your body does adjust as time goes on though.
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