Hello everyone. I sometimes feel that people who havnt had PMR or are close to someone who has it can’t understand why one busy day exhausts me so much that I can do very little the next day or standing for 5 minutes makes my back ache so much , I have to sit down. And why can’t I arrange a definite date for coffee or lunch next week?It is difficult to explain that it depends how I am that day. Of course I have friends and family who really try, but I sometimes feel I am a bit of a wimp and should cope better. Perhaps it’s ok to be a wimp at 81?! All the best and take care. x
Other people’s reactions to PMR.: Hello everyone. I... - PMRGCAuk
Other people’s reactions to PMR.
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sewingscissors
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100 Replies
•
You will give up explaining in the end as many do on here....
I have had PMR 10 years, and some still don`t "get it" who I know.....what many will say is...yes I get tired....no the Deathly Fatigue is something else!....
You are definitely not a wimp, and you will get used to saying you will meet someone if you can on that day, but you will have to rest a couple of days before, but you can`t promise!....because PMR has it`s own rules.....
When we do anything we sometimes pay the price, it`s getting the balance right, and even then well.....
Good luck...
My sisters are always on the verge of saying that it is all in my mind. Makes me boil like a stormy sea.
Brighton storm
Of course it's in your mind! It is your brain telling you that you are suffering or that you are extremely tired.
Just ignore them. You know what you are going through (so do all of us)! Don't boil over, refer to the wonderful people on this forum.
That’s what I do. I see their eyes go up. I let them say things but don’t feel hurt anymore because it hurts trying to appease them and why should I😊
Suggest that they read the comments on this forum. They would have a much better idea of how to look after you and your “ all in the mind” condition then! Good luck with educating them.
• in reply toSeacat30
Love that moody sea!
Seacat30• in reply to
It waa a wild day but today is going to be worse.
Wild sea
• in reply toSeacat30
That awesome, I love the sea, in Cambridgeshire it’s easier to drive to the east coast sometimes just to smell the sea and have fish and chips of course 🌊
Seacat30• in reply to
I spent an awful lot of time in Norfolk as a child.
I live in Norfolk, not too far to see the sea or the broads....I sometimes when not well say to OH I need to see water!....somehow it calms me...love it, couldn`t imagine living too far away. My favourite place when I went abroad was Lake Garda....water again!
Hi, I think that all of us on this forum have been there, or still are!!!Pmr is a difficult illness to explain to others as much as to those of us that suffer from it. One thing you could try, if you haven’t already done so, is to get a copy of Kate Gilbert’s book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, and lend it to family and/ or friends to read. You can always highlight the most relevant sections to your situation..
The other big problem with pmr is that you don’t necessarily look ill, and it is not uncommon for people to say how well you look.
So, you’re no wimp at 81; that’s my age, and I don’t consider myself a wimp.
Good luck.
Paddy
I did exactly that at the beginning but that was two years ago and they’ve forgotten what they read ! I actually feel much worse two years down the line ( the DF not the pain ) but I can’t keep on about it.
How are you ? You look well !!
DorsetLadyPMRGCAuk volunteer
You’re not a wimp, unfortunately it’s all part and parcel of the illness.
Everybody in life gets good and bad days, but with an autoimmune illness it’s much more pronounced.
You probably can arrange a date for coffee or lunch, just ensure you have a restful day the day before, and the day after if necessary.
It’s all about learning to pace yourself, and best thing is not to have ‘a busy day’ too often …..you can’t do half a dozen things straight after each other like you did before……and there is nothing wrong with starting a job, having a rest for 10mins, or longer if required and then finishing it off.
As for friends and family just tell them your immune system is in turmoil, and although you might look the same as normal on the outside, your body is struggling on the inside, so you need more rest than usual.
• in reply toDorsetLady
Although I have Stills not PMR I rest between jobs for 30 minutes and that means I can Hoover and polish in the same day for example.
Hoover AND polish! don't tell PMRpro -she'll have a funny turn 🙄.. me too!
• in reply toDorsetLady
🤣🤣
Spent too many years living in Army Married Quarters - when on "march out" the house had to be like a new pin (and down to the occupants [i.e. usually me, even when pregnant, hubby usually managed to be on manoeuvres or a course] no getting a cleaning firm in like nowadays!).....now I do what is needed, when it's needed, but no more!
• in reply toDorsetLady
Gosh I remember my Mum getting ready for ‘marching out’ checks, always stressful but luckily we were usually at boarding school but we had the equivalent of marching out on the last day of term.
Thanks, just just made me feel really ancient!🙄.. yes they were stressful, especially when you had to live in it as well..... remember my first one - in Germany - young married couple so virtually all army issue furniture etc...
The people responsible for "marching out" were local civilians, and one well known gentleman - was quite tall and surreptitiously (or so he thought) used to rest his hand on the top of an open door to see if it had been cleaned....word soon got around! After that, always paid attention to doors.. and ovens - hated ovens!
Seven MQs in 22 years.....
• in reply toDorsetLady
When I was about 5 we were stationed in Geilenkichen
I remember those days and everything having to tally , every knife fork and spoon!
…and the parlance stays with you! Spoon, tea, 6…..Sheet, bed, white, double….. and everything marked with MODs crowfoot! 🤣😂🤣
Having one already ...
😂🤣🤣
Longtimer• in reply to
Dust if you must...that`s my excuse not to!
Rosbud• in reply to
Blimey, that’s A step to far , I’ve job at A time !
They need to read the stories we've linked to - The Spoons Theory and Gorilla in the House. They are somewhere in the FAQs. Maybe Living with PMR?
Hi there sewingscissors, I just wanted to reassure you that what you're experiencing with others is definitely a common issue for many of us. Because our condition is invisible and we 'look ok', people assume we are ok. I've been on both sides of the issue ... my dad had PMR and I was guilty of not understanding why he wouldn't do certain things! It seemed to me that he was making a fuss about nothing, but I now of course know that wasn't true.... it wasn't that he 'wouldn't'. The truth was that he 'couldn't'!! So, how wrong was I!! He passed away 2yrs before my own diagnosis and I'd give anything to be able to tell him that I understand now!
Unfortunately, it's probably almost impossible for anyone who's not suffered from PMR/GCA to fully understand what the condition does to our body, our physical strength, our mental well-being, our stamina and our lives! All we can do is keep calm and keep trying to gently explain our situation......as many times as necessary!
You're most definitely not a wimp. In fact I think we're some of the strongest people you could meet.
From my own personal perspective, people don't have to understand..... they just have to accept that if I say I can't do something, or I need to stop, then that's what I need to do and no questions asked!
Well said Kendrew 
Thank you so much all you wonderful people. I feel so much better now with all your reassurance and understanding . And your advice. My new mantra is “I am not a wimp”! Have a good weekend. Oh yes, forgot to say I have decided not to run the London Marathon on Sunday! All the best. Liz x
Well THAT is very wimpish ... 
Maybe next year
Same here! 😉😂🤣
Always so clear and emotive kendrew x
By the way! What's wrong with being a bit of a wimp at 81? I'm 82 and I don't care if someone finds me a wimp. I'm comfortable with myself.
We are limp wimps, and so what....like you say nothing wrong with that...👍
PMRproAmbassador
Some links here to offer them for "entertainment"!:
healthunlocked.com/pmrgcauk......
HeronNS mentioned them above.
In the FAQ's ,scroll down to You Are Not Alone and then send them the links to You Tube and tell them to watch it. It was made specifically for family and friends - and for new people to PMR & GCA.
Nearly 2000 copies were distributed by the group that made it - outside the UK as well
I think that it is really ok to be a wimp at 81, 71, 61, and 51 with this dratted disease.
"dratted"? I think I might find a more descriptive word!!!
I am in polite company though. 😂
😂😂
What makes you think that?
Good for you, Sewing scissors. Let's hear it for all of us 80+ year olds! No, we are not wimps, but we are old enough to know it and be comfortable in our own skins. This evening I went out with 2 of my children and their partners for oysters and champagne. Marvellous! Tomorrow is my birthday. I'll be 82 and my family don't really get it that after tonight's activities I'll probably spend most of the day flaked out on the sofa with cups of tea, reading and snoozing. But never mind - for me it will have been worth it! Enjoy the weekend everyone.....
Thank you bussell and Hurtinpat. I am so grateful for your reassuring replies. Champagne sounds good, but I am not sure about the Oysters! It is our 5th wedding anniversary next Friday. Yes you did read that right! Second marriage late in life and wonderful! I have been worried about how to celebrate and thought it might be fish and chips at home, but perhaps we will go out . Any suggestions? All the best to all my kind friends. x
How wonderful for you both and that you have found happiness again. Fish and chips sounds pretty good to me - one of life's great treats! Could always combine with champagne.....
• in reply tobussell
Maybe just stick to 6 glasses of champagne 🥂
Belated happy birthday. Oysters and champers - brill way to celebrate and worth a few days off.
Due to work being done in conservatory and bad weather I've been taking it easier and not forcing myself to do gardening in spurts all day - gosh i feel so much better and am sleeping so much better.
Here is a link to the spoon theory. I’ve found it very helpful in explaining things. Eg why I can’t do anything during the day if I want to go out at night.healthline.com/health/spoon...
I have read and agree with all the comments below, from our great community ! Its like a friend of mine once said who had suffered with very bad mental health problems for years. {If i had a broken leg, people would say what a pity, but because they can not see it some can not feel what your going through !}Chin up we are not wimps ! We are very strong people going through a tough time !Best wishes Viv🌷
I gave up telling anyone I had pmr years ago.They don't understand.I have made a new friend and she told me she has pmr,we've bonded !Ps you are not a wimp!
I don’t have PMR but suffer unseen pain, stiffness and fatigue. Years ago when I used the London Underground for work each day I made myself a badge that said ‘seat required please’ - it worked most of the time. I find shopping hard and sometimes go into changing rooms just to sit down 😃
Nextoneplease• in reply to
Oh my gosh, I thought it was just me who used changing rooms to have a rest!!! Although now I’m afraid clothes shopping online is my limit 🤷♀️
• in reply toNextoneplease
Any shopping for clothes is good shopping 🛍
Let’s just hope that they don’t ever have to suffer from this vile disease.
Maybe some of them need to, or is that being naughty.
It crosses my mind frequently!!!!
Not naughty, fact! It’s annoying when you’ve managed to drag yourself to the local shop and bump into to someone you know, and they say “hello! You’re looking really well today!” And your dying inside trying to bear the pain, and all you want to do is catch your breath and run back home to safety, which you know is impossible. Hey ho, there we go. Have a great weekend everyone, if you can 😂😂😂
I've implied this as it would genuinely make them understand even if only for an hour or two (wouldn't that have been a blessing) but in truth we all know how cripplingly painful PMR can be and if you add to that GCA giving almost 18hrs splitting head pain with a scalp so sensitive you can't touch I honestly wouldn't wish that on anyone.
Hi, Even though my husband knows I have this condition he still doesn’t understand why I get so tired, nor does my family, they still think I can do everything.
I’ve got all the family here at the moment, I’m still having to do the dinners and so on, and this is all while not being able to weight bear on one leg ?
🤔😬
You really need to go on strike.....................so just sit down...........and say, "I have this auto-immune illness which none of you want to know or understand. So if you don't want to starve then you will have to do everything. In case you did not get it, I am on strike from now on.
You could also make them sit down and look at the You Tube Video (link in FAQ's) and say "watch this and then I might just point you in the direction of the cooker".
Excellent jinasc
Hi 2013mayo - I can be my own worst enemy too 🤔 The truth is, I want to be the same person I was, so I’ll do anything to make it look as if I’m coping. Take care of yourself - I’ve certainly had to learn to x
Yes I do like to do it my own way, otherwise they make such a mess, it’s easier for me to do it sometimes.Only trouble is I am so exhausted by the time they go home, ( 3 days time).
It’s great to see them though, trouble is I have the biggest house, not that big, but bigger than my son or daughter house, they have 3 bed houses, we have 4.
It’s always been the the same, as far back as I can remember it always been my house, maybe I should take it as a compliment, even when I ask them not to make a mess, nothing seems to bother them 🤔
Xx
Tricky situation!! It does seem that they don’t understand as well as they might. Have you tried simply telling them your limits, even if you don’t go into the exact whys and wherefores? 🤔I’m lucky enough to be at my daughters just now, but usually every Christmas we have a houseful…..😳
downsize 2013mayo..get them to pick you up then when you go round theirs, let them know they might have to wait till you are ready to leave, you might after all need a "power nap" (c.o. jinasc), prior to visiting.
I’m incredibly lucky in one way as my youngest daughter has Fibromyalgia and was diagnosed 37 years ago and she understands and puts the others in there place if she feels they are being difficult if I have to drop out or leave early from meet ups , it took her elder sister going to a hospital appointment with her for her to understand how Fibro can make you feel abs we now tell her to think back to that day and maybe she’ll understand x
Mine get the bedding handed to them to make the bed. We eat out or get a carry-oot in the evenings from one of the restaurants in the village I don't do any more than I must - there is a dishwasher and if it has to go on twice a day (it's a little one) then it has to go on twice a day! I do have to wash the bedding but I have a cleaner now - I could give her the ironing!The girls are coming in a few weeks and they suggested B&B or a flat in the village - plenty of it, but it seems an awful lot of money per night!! So we'll try here first. If it doesn't work, fair enough. Question: can I be bothered to walk up there in the evening - just me would be cheaper!!!!
Oh the grownups stay in b/b but stay here all day from early morning till late at night, the kids stay here, the others who live down the road come here also , never ending 😬
Hi, Unfortunately as it’s one of those conditions that no one can ‘see’ so
it’s very hard for them to understand…..
I found, that it’s best to pace yourself, choose who you’d really like to see & avoid larger groups.
If you can get someone to pick you up to meet for coffee/lunch; keep the group(s) small or even one to one; arrange to see people at what is your best time of the day;
don’t do housework or any tasks just concentrate on getting ready to go out.
Seeing your friends is the best therapy but avoid people who are depressing & who moan a lot! 😉
Best of Luck
MrsN
Hi there At 81 perhaps a lot of your symptoms are just general aging symptoms and your friends perhaps think that you are just speaking about issues that affect most people your age . I also have PMR and GCA and being in my 70 ,s can not sometimes differentiate between how I would feel without these issues and just be a regular 81 year old My best advice which works for me is keep your dates and try and keep busy as when I am with friends my aches and pains “ miraculously “ are unnoticeable by me as my interactions keep my mind off myself
Good luck
but then they come to bite you maybe the next day Darcy2000. I gave up worrying what others think and if it doesn't suit them because I can't or won't do something then tough. My buddy who cycled with me saw me not at my worst but 2 weeks after and was shocked. He drops round now and then and says how fit and healthy I look and I sound like my energetic go-getting self not the decrepit 90 year old with a feeble voice. He's actually a great guy but even he whose seen me recover dramatically from a near death crash in only 4 weeks really can't understand.
simply stated by all above sewingscissors, you are not a wimp. Still at 81 why should you care. I suppose because, firstly you wouldn't honestly wish this horrible burden on anyone however bad they were, and because that's what you feel you are hurt they can't be bothered to try and really understand just how debilitating and devastating it has been to the hopes for all the things you wanted to do still and maybe now cannot. Try and get that across to them when they seem receptive.
We have an “invisible illness” so others around us forget about our condition, or make assumptions about our abilities. If we walked around with a cast on, I venture we’d be treated differently.
It is stressful and difficult for us and our friends/family, when plans are made and fall through due to our medical woes. At 81, I would think your folks would exercise patience and understanding. I’m not always comfortable reminding people of my limitations as it serves to remind me of what I CAN’T do, when I’d benefit more from paying more attention to what I am able to do.
I’ve learned that everyone processes and responds differently to my chronic condition. Some, like my closest friend, I had assumed would be supportive. Instead I eventually ended our friendship because beyond not “getting it”, she resented my new lifestyle and resulting weight loss.
Surround yourself with those who love and support you. Sounds like you are doing the best you can with what you have. Getting creative (perhaps they could bring the coffee to you), and making adjustments can help. Remember you always have us forum members who “get it”.
I’ve had PMR for almost a year now, and have found this to be the case. I’m often taking a “down day” to recover from a simple event. I’m a bit hurt that family & friends don’t seem to understand, but they just haven’t experienced it — so I understand. Still hurts to know they believe it’s all in my head or I love being the center of attention. 😐Hang in there and know that all of us are here to read your vents and sympathize.
Hi sewing scissors. I'm quite new to PMR (June 2021 diagnosis). I belong to a walking group and still able to go out with them but have quickly learned not to say too much about my health. My 85 year old cousin is in the group, has a touch of OA and believes we should just "fight through the pain". I look healthy and am able to walk better than several in the group so most are not aware I have health issues. I frequently have to listen to many long stories about very minor health problems but don't say too much about my own health. I've now gone down to 9mg of pred and think I can feel an odd twinge or two plus am having a lot of sweats so wonder how long it'll be before I'll have to limit the walks I go on. A family member has also developed a breast tissue problem and is waiting for it to be checked out so, because this is something that is easily understood, they are getting a lot of sympathy whilst I just remain quiet in the background. I wouldn't even consider giving anyone information on PMR as I'd be accused of making mountains out of molehills so I find it best to just steer my own course with the help of this site.
"I've now gone down to 9mg of pred and think I can feel an odd twinge or two plus am having a lot of sweats so wonder how long it'll be before I'll have to limit the walks I go on"
No - stop reducing the dose for a while instead!!! You are never reducing relentlessly to zero - you are tapering (different from reduction) looking for the lowest dose that gives you the same result as the starting dose did. To get to 9mg in 4 months is really good - don't let ANY doctor try to tell you otherwise. Sometimes just waiting a few months will let you continue the downward path - but forcing a drop when you aren't ready all too often ends in needing to go back to a much higher dose to get things sorted out and the loss of all the perceived benefit of the speedy reduction.
Thanks PMRpro, I do understand about the tapering, however, what it says on my pred boxes as instructed by the GP who wrote the prescription. "...to be taken daily with food for four weeks then reduced by 1mg every four weeks until stopped." I intend trying to get a GP appointment to go over several questions I have but it isn't easy getting an appointment these days and I'll have to start with another GP as the one I was seeing has left the practice, however, I do intend pushing on until I see someone.
Unfortunately that isn't the way PMR works! It isn't an illness for which you take a dose of pred that cures something and then you stop it. It is a management strategy and you need the dose you need as long as the underlying autoimmune cause of the symptoms is active. And THAT is a question like how long is a piece of string!
Hello Scotmack, I have the same instructions on my prescription bottle as you. I had some dialogue with my Pharmacist about what would happen if I had to go back up a couple of mg due to flare issues - would I need to contact my GP, and have it approved for them to increase the dosage. She told me it wasn't necessary, as they know this can happen, and they would adjust it at my request. It might be something you could inquire about.
Perfectly to be a wimp at 81 Id say. 🤩. You seem to have a good attitude. Take care
Wimp? You sound more like a warrior queen to me.
One thing no one has mentioned is how rare PMR is. Unless you already know someone with it, you're not going to have a clue. Heck, I've run into medical types who haven't heard of it.
I don't think it is that rare. Found statement that the incidence is 95 per 100,000 people in the UK. Because it is one of the more common ailments among older people there really is no excuse for the medical profession not to know more about it and the correct way to manage it. Yet you are quite right, probably very few of us had ever heard of it before we were diagnosed, and I still have to correct people when they confuse it with fibromyalgia. Even my hubby who has lived with me and my PMR for some years now was all excited a couple of months ago finding this great article about what I have and when he shared it, yes, you guessed it, it was about fibro!
PMR isn't rare even if the rare disorders site claims it is - GCA is but there are about 7 times as many PMR patients as GCA ones. PMR is the most common vasculitis in over 65s - it IS rare in under 50s and in Asian and Black populations and so overall I suppose that may make it rare in the general population. But the numbers are increasing - because the population is aging.
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