PMR, Brain Fog

I wouldn't do that if I were you, it's very chilly at this time of the year, and the worst of it is you can probably swim!!  😃

Anyway, we would miss you.

Have a good, pain free weekend.

Actually swimming is the one thing I really cannot do anymore. I was a keen swimmer before PMR now I just sink like a stone. I think. It may. Be to do with the water retention. My legs are four times the size they were before Pred

Accepting our new limits is sometimes difficult, but I am treating myself with new, more sedate ways of enjoying myself. Go for fun things not the lake.  I have always been a shrinking violet, but I have now got floaty cotton scarves so I can mop my sweaty brow. My glasses are more often perched on top of my head, when I am out, as foggy lenses are a real give away that i am having a head sweat. I probably look more like Aunt Acid (a cartoon character I love), but I prefer to imagine I'm Audrey Hepburn. Lets not let this old age stuff get us down ! Pineapple juice seems to keep my fluid retention down. 

My rheumy (and you know what I think of her) the last time I saw her (and hope it`s the last)  handed me a piece of paper and said, the next time I see you, I want you down to 5mg....( I`m at 11mg right now)..and one morning when you are, don`t take the pred have this blood test...and it`s the ACTH which you mentioned above.....she`ll have a long wait...because I`m doing it very slow....much slower than she wants....

I have  to say though PMR is a very puzzling condition to me...inas much that some people can do exercises...walk distances, others even on pred like myself...struggle with everyday life...it never makes much sense to me, only that we are all different in what we respond to and react to....people keep saying to me...if your`e on 11mg why isn`t it giving you lots of energy and why do you get side affects after all this time (4 years).....I just don`t have the answers

I, too, find life challenging and find it difficult to walk any distance, let alone exercise on a regular basis.  I rarely have motivation to do things and when I do, I tend to overdo.  I'm almost 2 yrs. into PMR and am currently taking 9 mg. of pred. to which my rheumy is constantly tellling me to reduce, reduce, reduce.  I got down to 8.5 mg. and had a flare so am back up to 9 mg. again.  I don't have the answers nor does my rheumy!!

Thank you. Will be home for a few weeks at Christmas...will ask my rheumy for the test. What problems will it save later? He will not like it that I am stuck on 8 mg for so long.

Part of it may be that people who are a lot fitter to start with remain able to do more. There is no question that doing what exercise you can does help manage it. In the first 5 years I was at the gym every day for an aqua class and it was much better for the rest of the day. When I moved here it wasn't an option and other problems came along to join in but even now I feel a lot better when I've been out and had a good walk. If I do a longer walk I notice it the next day but not badly.We do try to walk for 1/2 hour every morning and I notice when we miss.

There are things I've always been able to do quite comfortably - but housework is the end for me. Any bending/reaching to clean something, you know what I mean, and my back just goes into spasm. It's far better than it was but still lurking. Good excuse not to use a broom or the vacuum cleaner!

Some side effects don't go away just because you've been on a medication a long time, some do. Like everything to do with PMR, everyone is different.

As I`ve said before...it mst be a Linda thing!....my rheumy uses the dreaded r word...but what can we do, when we reduce and we keep getting the flares!

No it s not a Linda thing, it's a PMR thing.  I'm 4 years in now and on many days I have to struggle to excercise, even a half hour walk shatters me sometimes.  PMR hit me quickly.  From being a very active 72 year old I became an old lady within just a few weeks.  And now, at 76, I keep waiting for this miraculous "PMR just fizzles out" attitude of the Rheumies to kick in.

Keep fighting and hoping.  We'll get there sometime.

 

Once again your story is the same as mine, 4 years in with PMR...and really struggle,

 I have had ME/Fibromyalgia for over 20 years, so know it`s not going to just go easily with me......and exercise is out of the question, I am often housebound for days at a time.....my struggle is with the Pred itself, I have never been able to tolerate medication of any sort since getting Fibro.....like you say Linda, we`ll get there!

Once again you are right!....I am certainly not "fit"  I have had ME/fibro for over 20 years, so haven`t had a good start with the PMR....I move around the house/garden as often as I can....I feel like I seize up otherwise...it has always been  about pacing and balancing things out in the past....but with PMR it doesn`t always work like that does it?  Like you my back can go into spasm...horrible....husband does housework...I try to do cooking....and maybe laundry...

Will always remember first going on 15mg.....walked miles, family/friends were amazed as was I.....it was sad though, reminded me of the person I should be and what I had been missing....husband said, like car with new engine!...but it wasn`t to last......the struggle with pred is I know because of sensitivity with any meds that I take, as with noise/light/smell, but will do things very slowly and get there....will be happy to get to 10mg and stay a while at that.....(11mg at moment) thanks again....

Back spasms tht don't go in a couple of days I usually take to my Bowen therapist - but a few little pinches that come over a few weeks usually herald a biggie soon after.

Laundry I can do, even ironing. Cooking - no choice, I'd starve if I didn't. Housework? David won't, I really find I can't. The shower is cleaned after every shower - even by him cos it's easy! - but I've just dusted in the bathroom as even I could see the dust but I'm knackered now...

When I once went in hopital hubby ironed, but,....only two fronts of shirt!...he said that`s all anyone sees!  I like to cook to make sure of decent meals!...Do think bathrooms are hard work, where does shower dust keep coming from??..My neighbours keep having "Dollymaids" in to do ovens/housework etc...but I really can`t pay someone to do it....not that bothered, if anyone is....they can do it for me!..

....

Have taken your advice and had three Bowens which really helped....looking forward now to a top-up after xmas...may even go before!

I don't know I'm born!  David keeps telling me to get rid of our cleaner because we can do it better ourselves.  The trouble is, he's right, but I haven't the guts to tell her we don't need her any more (she's been with us too long)!

Dusting is easy.  I just dampen my little micro faser brush(!) and flit round the whole apartment in 10 minutes.  Sometimes I quite enjoy it.  What I can't abide is ironing (and my 'help' doesn't include ironing in her work).

I love cooking.  Prefer it to going out.  Portions are so huge over here.  Will go to any buffet lunches though.

You could always suggest to your cleaner that you now need someone to iron....she may decide to leave herself!

Sorry Constance got your name wrong  earlier...must be my pred head again! very tired today....

Love that bit about the shirt. That's a typical male though I managed to train mine years ago and he does his own ironing! Read recently a tip of putting up get well cards and people will realise the reason for the dust etc. They may even offer to do your housework. Haven't tried it.

No, I do that every winter.  What's the point of ironing everything else when they are covered up by jumpers?

I know you are right , Constance. I wish I could get my brain round that one. It does make sense.

Constance, exactly.  My cupboard is filled with unironed linen shirts and so forth, but I won't need them for months!  One good thing about winter, much less ironing.  But I prefer ironing over vacuuming any day.