PMRGCAuk
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Again 😞

Hi all you lovely people, a week tomorrow been on 10mg ( upped by 2.5mg )

My GCA not going seem fine until around lunch time then on pain killers.

Don't even want to get up in a morning as just so tired yet not doing much at all lately.

Do you think I should up another 2.5 or 5mg for a week as I am fed up of this GCA ( not depressed though like last time)

One day I will stop having pain etc

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Hello friend, 🌷🌷🌷

This disorder sometimes sucks the heart and soul out of our daily life...pain and the consequences of medications we use to manage the disorder can leave us depleted in spirit and joy in our lives.

Today, just for a moment...take some time to stop ... breathe.......

find One Thing for which you are grateful...

savor that single moment.

This time shall pass, and you will live pain free again.....I promise.

Till then...be as kind to yourself as you would be to your dear friend... you are worth the same care and concern and comfort you would give another...

Please let us know how you are doing... we are a virtual family who sometimes understands your trials better than any other, and we care.....

Kindest regards, Jerri

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Hello purple crow,

I had a day of ease yesterday and went clothes shopping 😇

with my friend.

Bought a lovely dress which caught my eye and felt wonderful, until we carried on round the shops and the pain started again and even PMR started up with the walking !

So w went back to my car and came home.

I just get annoyed that I can't do anything as I am far from a lazy person !

This is what gets me down as I have always been an active lady.

Let's hope tomorrow brings a new day of pain free and some energy again ! X

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As Poopadoop mentioned me, here I am - yet another Aries - there must be something in it!

I wouldn't have said that shopping was 'a day of ease' - in fact the exact opposite! A nightmare! No wonder you felt shattered.

You haven't got the PACING element sorted yet, have you? Sorry to nag, but from one stubborn Aries to another - you must SLOW down- it's not being lazy, it's being realistic, and sensible, and grown up.

You do need to get it under control - but not because of the upcoming blood tests, but for YOU. The only way to do that is to take enough Pred, and stop trying to do too much.

Your doctor has given you authority to change your Pred, so use that trust wisely - it means you can go up as well as down!

Take care.

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Funny - exactly what I was going to say! Shopping and ease or pleasure can't exist in the same sentence...

It is noisy, stressful, energy sapping - even if you LIKE shopping.

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Not my favourite occupation - never has been, even less nowadays.

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OH has taken to slowly wandering around the supermarket leaning on the trolley. Takes 10 minutes to decide which apple juice is the one he wants, or has to examine every available pack of chocolate biscuits - and then takes one with nuts which he won't eat (never takes his reading specs with him). Me? I just want in and out asap - hate it when the fruit and veg is full of tourists who don't know how to use the scales...

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Yes... first time shopping in Spain we were those tourists! Got it sussed now, but still not a favourite trip!

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Dear PMRpro.

You are very lucky to have a 'him' to go shopping with.

Don't knock!

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Mine was really to get a dress to cheer myself up 😂

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Do it on line Margaret. There'll probably be a few disasters but many more successes.

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However much a new dress MIGHT cheer me up (probably wouldn't, I'm a very strange woman) the process of acquiring it would send me into a decline ;-)

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😂😬

I was happy with my new dress yesterday but today wondered why I bought it lol lol

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Don't you think DorsetLady we are the best star sign for stubbornness lol

Going on 15mg in morning and if I get fat again I am blaming you all 😬

I have lost half stone with all the pain etc hence bought a new dress, hope next week I don't have to exchange it for a larger size ! 😂

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We are the best star sign - full stop!

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Yes yes yes, and let's hope no one dares contradict us lol lol

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That's asking for trouble. My darling late husband's nickname for me was "The Dragon 🐉 " can't possibly understand why 😇 - I'm not even a little bit Welsh!

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😂😂😂

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Sorry Margaret, I hope you didn't think the " never mind " was for you It was for Dorset Lady commiserating because she wasn't Welsh. Wretched site, it's always doing stupid things to me and I am more than capable of doing that myself.

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Never mind!

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Oh don't worry too much - I'm quite happy to be English!!😉

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Hi Margaret, what a lovely day you had! And a new dress too! Good for you!👏😘

I always schedule sit-down breaks in my day outings... ...lunch, tea, cocktails, peoplewatching... let's me break up the walk-stand combo that gives me most grief, and is a pleasant interlude too. Kind regards, Jerri

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Hi Jerri,

Cocktails ? Shame on you lol I only have to one sip of drink and I am anybody's lol lol

My friend is very very good she can see when I am in pain and tells me we are going for a sit down ( I can't fool her )

When I up to 15mg in morning I might be able to do the marathon 😂 As long as I don't get up to early like when I was on 60mg, I was in the garden at 5 in morning trying not to make a noise !!! But burnt myself out at 8 at night.

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Oh yes! You make me giggle! 😁

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Hello Margaret,

There are several aspects of your post which perplex me.

I have had GCA for 6.5 years now and although I had pain in head, shoulders, ears etc before I was diagnosed, that virtually disappeared after I started on Pred. It was, and still is, though abated to some extent, the overwhelming, debilitating fatigue which affected me. There is absolutely no way I could have gone shopping in the early stages of that. I still can't. I was giddy, passing out and 'away with the fairies' if I was not very, very careful how I stood up.

My one blessing was that I was not suffering pain; are you sure it's not PMR giving you that, you poor thing?

Whatever advice you are offered on here I think you should get back to your GP/Rheumy ASAP - which is advice , of course!

I very much hope you're feeling better soon - hundreds of us who suffer with these conditions sympathise with you and wish you well.

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Hi Mega,

Had GCA FOR 5 years now and PMR think it's 2 years ( all seems a lifetime )

I have not been in remission at all and got down to 7.5mg then 7mg from original 60mg and had a flare up bad ! with GCA .

Kept quiet on here as stubborn and hoped it would go away, but no luck.

Been on 10mg for a week and head lasting a bit longer then comes back, so tomorrow upping preds again and fingers crossed it will all work !

My doctor is quite happy at letting me do my preds as long as I still see him. We all know our own bodies better than them 😇

I do still go out the shops with my friend but only if I know I am good , not often, she watches me like a hawk ( I can't fool her )

So hope tomorrow is a new day with no pain !

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Hello Margaret,

It really is awful isn't it? I wake up every morning (or half way through the night) hoping that this relentless condition will begin to leave me. It doesn't happen but it IS an improvement on how I was a few years ago so small mercies and all that I suppose.

I cannot get below 5 mgs of Pred, so I am a little ahead of you there but my arms are one huge purple mass from knuckles to shoulders and I feel as though I'm being robbed of the last years of my life.

I wish nothing but the best for you. It is hard but it will end.

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Hi mega

Why are your arms purple ???? you poor thing bless you.

I am pleased to hear your down to 5mg, it is so so hard to lower preds, but some on here have gone into remission which is lovely to hear about as it gives us hope for the future.

I have another blood test next month but won't build my hopes up 🙃 When I ask my Doctor when I will go in remission he says he has no answer for me, at least he is honest.

I used to think I was the only one who had these until I found this forum and the people on here have been a God send to me.

I moan and groan and they still help me with their experience which makes me feel better.

Just noticed the time !!! Must put my bin out and get ready for bed now.

Take care x

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So sorry to ignore your reply 23(!!) days ago.

My arms are as they are because of the double-edged sort of Pred. Yes, it helps to alleviate the symptons of GCA but long-term it also has adverse effects.

From shoulder to knuckles I have purple blobs or masses. AIthough most of them appear randomly, if I dare to allow a shoulder strap on a handbag, for instance, to slip down my arm it will result in the pbs. Apart from feeling totally fatigued I loathe this aspect of GCA more than I can say. They last for weeks, too.

My son in America, who is very supportive laughed like a drain when I said that having Irish skin didn't help. It is fine, delicate skin though and mine now 'concertinas' up at the slightest knock.

I had a fall two weeks ago, at home onto a carpet with the obligatory long sleeves (me, not the carpet!) and still managed to 'skin' my forearm nearly from elbow to wrist. Still having to have dressing done a couple of times a week, though I think the end is in sight for that.

Well, that's a rather long-winded answer to your question. I'd send you a pic of my arms if I knew how - no I wouldn't really.

I wish you well again soon.

Mega

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I have suffered from the purple blobs virtually since I started pred. They just suddenly appear. They have improved slightly since I reduced the pred. They take around three weeks to slowly fade away I reckon. Sometimes they bleed which makes a real mess of the sheets!

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Hi piglette.

Miserable isn't it? I haven't felt able to wear anything but long sleeves for 6.5 years now, in case people think it's contagious.

My skin is so paper thin too that I managed to strip an area on my forearm of around 6"X 3", after a fall onto the carpet at home.

Just as I think things might be improving, they get worse. There is no-one more sympathetic towards you than me!

Try to keep smiling rather though, we will survive!!

Mega

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That should have read "smiling, rather than frowning" though. I blame the computer!

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You can edit your posts - click on the box with the downward pointing arrow.

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Thank you PMRpro. I didn't know that but it's going to come in very handy.

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Hi mega, I get a cheap thrill in counting the number of blobs. Sometimes it looks like I have been scratched by roses or a wild cat. I do find people give me a wide birth at the swimming pool! I also am normally covered in bruises. At the moment one wrist looks like I have been manacled.

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You are not a lazy person and a lot of us got into this state because as Dorset Lady described as Duracell Bunny behaviour, that was certainly me. Just accept where you, I share your frustration but as others have said it will improve.

Good luck

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hi Margaret1951

I looked at your post from a week ago too. I don't have gca 'just'PMR. But to me it seems that if you are still getting so many symptoms you are too low on pred. Even with PMR I have had to go back to 15mg and after 12 months still on 13. as many people said to me...whats the point of taking steroids without benefit.

Please read Dorset lady's response to your last messages. You really need relief from the symptoms now. hope you start to feel better soon.

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Thank you poopadoop, will start again in morning on 15mg, hope I don't get a round face again !! but better than pain I know. I am just so stubborn, typical Aries, hoping not to let these diseases beat me.

My Doctor lets me juggle the preds on my own as he said I know my body better than he does.

He never tries to get me on a lower does unless I am ready.

Due for my blood test end next month, so need to. get this under control. X

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I too am typically stubborn Aries! I have given in to cheeks...though I am often tempted to draw on a black nose and whiskers. 🐭

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Ah bless you , you just gave me a laugh !!

Us Aries are true to our sign ! Never thought about drawing on my fat cheeks !! Lol 😸

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Hi Margaret1951,

I think we have to forget about the round cheeks( hard I know) and concentrate on the smooth skin, lack of lines and feeling a bit better! ( and also being told how well we look- arrr!! 😬)

I think too, for me anyway, when we're having a better day we just carry it on just that little bit too long because we're anxious to feel " normal" again. Whatever that means because normal with these conditions is not normal as it used to be. For many of us our old " normal" may have been a contributory factor in becoming unwell in the first place because we may have been folk who rushed everywhere and tried to fit everything in!

For myself it's trying to adjust to a new normal, trying to pace, to stop before you reach the point where things start to get uncomfortable ( as in shopping) and to get plenty of rest periods in between activities. It's moving a bit slower in the slow lane and trying to be good to yourself. Unfortunately often friends and family don't get it but never mind we're on the road to recovery and need to do all we can to aid that process!!

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We will all be glad to be normal again, but what IS normal! My mum God bless her always told me I have never been normal 😱

So far today head been ok but can feel something there, hope it's spiders this time lol and not to much pain 😂

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Shopping? I haven't been able to shop for years, honestly, due to this awful condition (GCA)

I have always had to be a strong, determined woman but this has defeated me.

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So sorry to hear that- it must be very frustrating and upsetting for you. Try not to feel defeated although I'm sure life has changed a lot for you and quite understandable to feel that way but we have to try to remain positive- although this seems to go forever it is treatable and we can only take one day at a time. Best wishes Jackie x

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Thank you, jakoh - what a kind response. I have been trying not to be defeated for at least 18 months now - prior to that I tried to be the warrier queen! It is just so relentless, and no-one in the medical world really understands what it's like. Just keep taking the steroids!

I really am not the self-pitying type but I have missed so much of the last part of my life that I confess to hating it with a passion - sorry!

Thank you for your best wishes and I wholeheartedly return them to you

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Thank you Mega. I know you don't live in a very populated place but are you able to get together with any otherGCA/PMR suffers? I go to a catch up group once a month and that has been a great help to me - meeting others who really understand what I'm going through and can advise and encourage. Best wishes Jackie x

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Got to say I find food shopping tiring. for past few weeks I have decided to use the little tesco near me rather than the closer massive one because I know some days it's too much. (other supermarkets are available) However when I go to big one I use the self scan. that way I don't have to move items 6 times from shelf to cupboard and at least reduce that to 4. in bad days that makes big difference, especially on heavy items.

Clothes and so on I use internet. Try to save my.energy for thing I enjoy more.

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I hate food shopping as come back with stuff I don't want to eat really ! And I hate it when some people hit you with a trolley, do they do it on purpose do you think lol

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I have a crutch that I pull behind so usually trip them before they get me!!

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👮‍♀️👷🏿‍♀️🏥

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😂😂😂

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😂😂😂🏒 nearest I could see to a crutch 😂

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I find it helps to go shopping several times a week and get smaller amounts but I live in a small town. Also I am always doing small loads of laundry. Smaller is more manageable.

I was recently visiting my daughter in a large city.i warned her that I couldn't walk very far. I had only 2 small meltdowns and we regrouped and figured it out. I stayed behind in a store while she went on and we took the bus more and drank ice tea and rested.

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I recognise that feeling. most of my family are good now. but I think I have pushed myself too much and liike you sat have a meltdown. it's usually when I am with brothers very young family I always overdo it. they came to visit from Netherlands earlier this year and were staying about 30miles away. I overdid day 1 but had made decision I wouldn't meet day 2. I was delirious by end of day 1 and had tv on laid on bed and kept waking myself up slurring answers to people on tv lol. rested day 2 and had shorter day 3. then rested for 4 days til legs came back a bit.

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Bless you , it is hard when company are around x

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I wonder if it would be a good thing to hire those shopping center electric chairs 😇

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at moment I drag myself round but have already decided if I need it I will. there are places like clumber park near workshop than rent them out. once kids go back to school I will be hiring to go collect wild chestnuts!

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😂😂😂

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That's what cafes are for! Living in Italy is a good retraining. Shops are open from 9 to 12 or 1pm, shut for 3 hours (I kid you not, nothing interferes with the staff going for a cooked lunch) and then you have another 3 or 4 hours. But all fresh food you buy daily - bread, meat and so on. which entices you to go out and walk for half an hour at least. Also good for PMR and the soul...

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A friend of mine was working on a floor in the mall at Luton, he told me it is the flooring they lay which makes feet and legs ache. Something to do with the special tiles ( was his job ) as I can't walk round without PMR starting up !

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totally believe that 're flooring. and places like Meadowhall in North and cribbs in South are not flat!!

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I think they make them like that for us poor people with PMR ! Perhaps we should just get an electric chair and run people over lol lol 😂

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half a dozen pmrers would clear the malls.

hope the end of weekend ok for you. take care

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Wouldn't it be lovely, the mall to ourselves and all the benches free !!!

😹

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That is very interesting Margaret 1951.

Long before I knew the miseries of GCA I used to remark to my husband that within 10 minutes of entering a supermarket my legs started to ache - I did have varicose veins but it happened nowhere else.

It's a strange marketing ploy though, because I couldn't wait to get out.

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I could not believe my friend also as we think they are really solid but not.

When I walk in my mall ( about once a month ) if you go slow you can actually feel the tiles going down a bit, like spongy. When I go my Tesco I can feel the soreness of PMR coming on so I try and get out asap. So he is right ( professional) about all these tiled floors !! I feel sorry for the staff who have to work there.

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Sounds like a good life PMRpro!! Maybe part of the recovery process for PMR/GCA should be living in Italy for a while?

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Or Spain, similar attitude. Everything stop for a siesta! Can't be bad!

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PMRPRO is going to book us all a ticket to go ! Thank youuuuu x 😂

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Yes could force myself to enjoy!! 😜

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Everyone is voted for on here !!!

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