This is the first post that I have written. I wondered if anyone else has lost all of there creativity. I used to paint, make special cakes ,enjoy cooking, but now it's like that part of my brain is dead.
I have taken steroids for 2 years now and everything that I used to enjoy like that has completely gone. I still go to my art class but it's for socialising now really, there is just no 'art' in me.
Not sure - I'm definitely not what you'd describe as even vaguely "arty" but until I had PMR I also enjoyed cooking and baking. Now cooking is a chore that has to be done and my baking amounts to 8 mincepies for Christmas - only because you can't buy them in Italy! The easier and quicker the cooking the better, if a recipe has more than about 4 ingredients I lose interest.
But whether that was entirely the PMR is difficult to say - I don't think it was pred, really the pleasure had gone long before I was "allowed" pred. When everything is an effort the pleasure soon fades - in my case is it the skiing and being "up the mountain" that is no longer tempting? The desire doesn't overcome the "whatever" feeling so I don't summon up the energy even though I probably could.
Creativity is there, get up and go done got up and went! Starting to be able to motivate myself a little more....got a hat half knit for a friend. Will post pics when it's done.
Hi, I was diagnosed with PMR 20 months ago. I've done the reduction thing right down to nothing and been in agony throughout. I too have lost my creativity - I used to make cards, write, bake, read, as well as all the active things such as riding, all that has gone now. I cannot concentrate and find no joy in former pleasures. In fact I only seem to want to stay at home. I thoroughly agree with another person who replied to you saying, that DRs don't know enough about this condition. One of my consultants flatly refused to see me, waving me away when I arrived in his clinic. Luckily his colleague took me on, and, although he also does not appear to have a full comprehension regarding PMR he was very shocked when my inflammatory levels rocketed on completion of the Pred course. We appear to be working through this together but I still feel so very ill
I see a a pattern here. I am the other way round though. It was before my diagnosis and treatment that I "lost the will to live". Since being of steroids I started, baking, cooking, gardening, socialising, all the things I had yearned for 6 long years. I hope I do not lose the enthusiasm again. Babs x
I too reduced too quickly the first time round. It was only after I started reading posts on this site that I learnt that I shouldn't reduce at all until the symptoms have been brought under control. That means that the pain should be minimal if not completely gone and should have been like that for at least 4 weeks and then don't reduce in big chunks. The slower the better and make sure than the symptoms are stable at the lower dose for at least a couple of weeks before reducing down again. One thing I have learnt on here is that there is no such thing as a "course" of pred with this condition. You have to keep taking it for as long as it takes, even if that means for the rest of your life, to keep the pain and inflammation under control. A big thank you to everyone on here, especially the admins, who have helped me to come to terms with what my body is going through and make the best of it. There are good days and there are bad, but I'm fine with that.
It is surprising, sometimes you don't realize how much more informed you are from reading comments on this site. My rheumy says that anything under 5 mil is not as bad on your body & if you decrease too fast you often wind up at a higher dose for longer. It's all a balancing act I guess.
Prior to being diagnosed I was really blah for months & then had a heck of a time with pred for a month or so. Don't have the energy I used to, but enough to enjoy moderate cycling etc. I attribute some to age as well.
"he was very shocked when my inflammatory levels rocketed on completion of the Pred course"
which suggests he doesn't know a lot about PMR! You don't "take a course of pred", you get the existing inflammation cleared out and under control and then you reduce the dose very gradually TO FIND THE LOWEST DOSE THAT MANAGES THE SYMPTOMS AS WELL AS THE STARTING DOSE.
It really isn't rocket science - they wouldn't give an RA patient a DMARD and once the symptoms had gone take it away would they? They don't give you BP meds and say you are cured because your BP is now normal so you can stop the meds. PMR is no different, except our DMARD is pred. PMR isn't the disease - it is just the symptoms of an underlying autoimmune disorder, you need pred to sort out the inflammation caused by that autoimmune disorder until it burns out and goes into remission. That is unlikely to be by the end of a fixed course of pred - it might be a couple of years if you are lucky. But 5 years is more like the mark for well over half of patients.
"I've done the reduction thing right down to nothing and been in agony throughout." - and that shows one of two things: it is possible that you don't have PMR of the sort we discuss here because you shouldn't have been in agony throughout - you should have had manageable pain levels at the starter dose. If you didn't get that relief at 20mg then it very possibly isn't PMR. If it is PMR, then you should not have been reducing just because your markers were normal - the symptoms ALWAYS trump the blood tests. The patient has pain/stiffness? Then DON'T reduce.
And you are another person I'm going to suggest should try a bit of Bowen therapy because it could well be there are some of the delightful little add-ons which might respond well to Bowen. Take some of the pain away at least and the pred has less to do.
I first noticed this effect many years ago when I was on birth control pills. Only took them for a year and recently, since pred, have been wondering if the disconcerting feeling they gave me that my brain seemed somehow disconnected is what is now called "brain fog". No doubt in my mind that hormones play a role in how we perceive the world, and that could influence creativity, as well as general energy levels. It is one of the sad things that happens to some of us. At least you have the socialization to enjoy and that is vital for your wellbeing.
Snap sitting here looking at two pillow cases with the cut out ready to saw new curtains for our motorhome known to her friends as MAY prep took 10 hours over 2weeks just need to thread sewing machine and do 5 hours work only single seams been doing simple work like this from age of 9,every day this week try to start . Manage to bake on Mondays only 2 things no stock for freezer ,been pred free 14days hope things improve over next couple of months.
Same with me,except I wondered if I started to loose creativity due to pains from PMR in top half of body ,before diagnosis . There is nothing more off putting having to take pain relief , before , incase or after doing something . Even though not much relief has come about .
To try to keep creating I swap about all the things I use to do .
Painting for a while , doing willow work ( which I am finding hard on hands ) quilting .And even light gardening . Stops being in one position , which certainly causes aches and pains .
It is a nuisance , as my working life was hoping that in retirement I would have more time for crafts . Good luck with getting better soon . Carol
I used to make a lot of cards and do still make some but have found easier less complicated ways to do it. I knit a bit but not following patterns as I can't seem to remember what I've read. I knit things like small dolls clothes where I used to knit for my grandson. Cooking too is hard as I have the same problem following recipes. I just create my own dishes for the two of us. I don't like cooking for more people now either, plus standing in the kitchen is a real effort for long.
I thought it was just old age in my case! Now you have me wondering? Club Zero saw my wish to play also vanish and desire to tutor IT as well. Maybe it's a post-steroid thing not to mention depression? Thanks for the post, it could really spark some interest.
Thank you for all of the replies, I also think that sleep deprivation every single night for over two years must have a lot to do with it.
Must say that it does worry me with all of the talk about lack of sleep and it being a cause of dementia. I do seem not to be able to remember and concentrate on so many things now and you wonder if it is purely lack of sleep or anything else.
Do hope not!
I think fatigue and depression are to blame for a lot of my reduction in creativity. Some days just have to be devoted to what is necessary to do and after doing battle with that my energy has gone. Also my hands are stiff and so I know I am not as good at fine work as I used to be.
I am trying to encourage myself by making sure I do a little often and try to break tasks down. It may take me 3 mornings to do what I would achieve in 1 but you can get there.
Socialising can be a struggle, I feel people think you are just moaning because you look well but are actually worn out and in pain.
Hello Sallyaches and Fellow Sufferers .. What an interesting post from fridkahlo and the replies are all very interesting. Over 11 years with PMR I have always got cross with myself when I couldn't or didn't have the energy to finish many things or I would push myself onwards with brain fog /Fatigue.. I love to knit and crochet but I now have to knit baby clothes or Dolls clothes and its taking me about 2 years or more to do a single bed throw for one of my Grand-daughters..its my dream to finish it ..My hands have been painful whilst being on so many different Steroid Sparing medications. I am always saying sorry because I can't keep up with household tasks,I do have a cleaner but I still like to be involved with certain things .. I'm always saying " I am working" and cooking is definetly a no no ..luckily for me my Partner likes cooking . Socialising is hard as I love to rest for a while in the afternoons but I love to be around my Grandchildren and try give up my rest when they visit .. I recently found The Bowen Therapy and after 6 weeks my pain level is easier and I feel a bit better and more Positive in myself .I would love to be able to walk again and I believe in the near future I will get around that bit better without my 4 wheeled rotator walker. I manage to keep the washing/laundry up together but certainly not everyday .It is Comforting to know that other sufferers take a long time to do things, certainly the old me pre PMR was not to leave things for tomorrow but I certainly have to now. When Family members were very nasty to me in the Summer I changed immensely inwardly ..in a way I have to thank them because its through them that I went ahead with the Bowen Therapy. I know its working for me and my Body is responding to it .I still have a long way to go on steroid reduction but I hope and pray that I don't get any more Flare ups on the way Best wishes to you all. trish29
Hi, I understand your loss of creativity. I have journeyed 2 years with PMR diagnosed and on pred.
I have always been creative and busy with my hands and brain. Writing, wire crafting, stained glass art, jewelry, etc, etc.
Everything crashed to ashes with the onset of PMR. Brain fog , I've heard it called. For me, it was more loss of executive function. Example, I
. I grieved the loss of my creativity more than loss of my ability to hike about the forest trails where I live.
Well, this is my third try with writing this post, I think my difficulty here is apparent...can't seem to finish anything
I do want you to know I have begun to paint watercolor again, and I am working on jewelry to take to holiday bazaar sales. My creativity has begun to return... Albeit incrementally. Do not despair, you still have it.
Try easy crossword puzzles to get your brain mixing it up again.
Best wishes on your journey. Jerri
I would say that my whole personality changed . I ached too much to be active so I resorted to staying home. I had never been a baker but started making cookies. Because I could sit during batches. Recently, my eldest daughter remarried and I had to get myself "up" for her wedding. I increased my dosage of prednisone beyond what my doctor would like....15 to 20 and added a pain pill. " Heavily medicated I had a wonderful time and was myself again. Is there a moral here? The woman who is so knowledgable from Italy has said that her doctor told her ....about prednisone.that she needs what she needs....taking that and running with it ... I tend to think that the paranoia about reducing dosage is part of the reason we suffer so much. I am reducing the prednisone and have eliminated the pain pill of course but it was rather eye opening. It is not the prednisone that is making me a different person....
I've always been a person who never sits still and has multiple projects going on. whether it be a craft project, or something in my garden, & I was VERY athletic. PMR brought everything to a crashing halt for quite a while until I got diagnosed & started prednisone. I feel a lot better, but I'm still limited in what I can do physically, not because I can't do it, but because I pay for it on the days following. That has affected me mentally & caused some depression because that was such a huge part of my life. My other projects have a hard time getting done now too. I don't think I've lost my creativity, because when I get up in the morning, I think of all these things I want to do during the day, but when it comes down to doing them, I just don't have the "oomph" to get going and do them. The thought of putting forth the effort sometimes make me think, "Oh, it's just too much work", even to do something I normally really enjoy. My hours of productivity during the day are so much less because it takes me a couple of hours to get going after I get up, and even though I always feel some fatigue, it hits even worse sometime late afternoon, then I'm just done for the day. I really have to prioritize the things I need or want to do each day, because I can't do even half of what I used to do. Very frustrating. I've discovered if I leave my craft projects out on the table all the time, I can go sit down and do a little at a time, and I don't have the effort involved of dragging everything out from the cupboards. That way I can do something I enjoy & alleviate some of what prevents me from doing it. Of course, my dining room table looks horrible all the time now, but heck, who cares--my happiness is more important, right??? Hang in there & try to find some ways to get to do those things you enjoy.
"my dining room table looks horrible all the time now, but heck, who cares--my happiness is more important, right??"
Absolutely right and that is not a messy table at all - it's called "intelligent management"!
I recently read that as long as you are aware you are having senior moments, etc., you are not suffering from dementia. Losing that self awareness is a danger signal. I'd say everyone on this thread has all their marbles, so to speak! Maybe getting together with a couple of friends one evening a month just to peck away at whatever the art or craft is, and chat, would be inspirational?
Yes I couldn't agree more with you and can't quite put my finger on why my enthusiasm for anything has all but dissipated at times.
Other than the fact we have good days and not so good days where the brain just goes a trifle slightly foggy, almost disengaged from the rest of the body.
Because it has gone on for so long we can't quite kick start our positivity to the extent it was prior to PMR, there seems no end in sight.
I too stay home a lot - I feel safer in my own environment and on a good day when sun is out love to tend to my garden albeit briefly at times, especially now that spring & summer is almost upon our doorstep.
Take good care and keep smiling as best you can.
Blessings abundantly to you wherever in the world you are
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