Just out of interest how has others like friends and family reacted to being told you have PMR ?
Not that I want sympathy but I get you look so well !! Oh you can't walk that far I thought all was okay with medication?
Just
Explaining PMR: Just out of interest how has... - PMRGCAuk
Explaining PMR
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rachelbell
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Pressed to quick !! Very frustrating to get across how ill I can feel 😞
No one really understood how I felt with pmr,I always looked ok I suppose.A year in and no one remembered I had it.My husband obviously did.Its now after one year off steroids that people are noticing I've lost over a stone and my hair looks better.
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Same here. No sympathy whatsoever. Long term so it easy to forget. All I get is ‘you are getting old’ if I opt not to do something because ‘I’ know my limits 😊
They were skeptical about the diagnosis in the first place. I was told that it was all in my mind or self inflicted in some way.
After grudging acceptance that I might be ill they all decided that I had recovered incredibly fast.
We are now back to the point where my sisters expect me to do things for them because I am younger.
😈
Yes - people either haven’t heard of it or assume it goes away - don’t worry just tell your nearest and dearest - it isn’t any one else’s business - good luck
Oh dear, what a shame - now here is a list of things that need doing 😕!
People don't get it. They get boggled by the long words. They think it's the same as fibromyalgia which more people have heard of. And Giant Cell Arteritis is interpreted as a form of arthritis. They look at you and think you look fine, and don't understand the need for you to pace yourself and not do too much.
Hi , I definitely don’t think people get it but then do they really want to get it ,they think but the medicine should be making you feel better (ye right ok )
My husband is the only one who can see me struggling after being such a fit person and I get very frustrated I can’t exercise or do much .
not to be horrible but it’s made me change giving so much to others and think more of me .
I can definitely recognise that reaction. I too have thought about people, and family members , I have helped financially and emotionally who have not been overly concerned about my GCA , because I look well! But don't let their reaction Rob you of your kind personality....just refuse to let them drain you anymore...give all your energy and positivity to your close friends and your self...not selfish, self care. 💞
I'm struggling tonight really upset just travelled 7 hours to see OH family took pain killers so could smile when I saw them it was. thought you was not well oh your one of those that put the pain on when you want attention. Felt so so hurt . I'm down as it is this really has been the last straw tonight xx
Nice family -not! Don’t think I’d be bothering to try visiting again, think your hubby needs to support you and tell his family how it really is…
Virtual hug to get you through 🌸
Thank you dreading next few days feel very poorly with the stress of it all . Not rushing back up again such a rude selfish family . Expecting all the grandchildren to be dropped off next 🙄
A seven hour journey is bad enough, without the added hassle of an unsympathetic welcome… do what you can, but do it for YOU, not them…..
It is so difficult to let these family members go....maybe not completely maybe still send birthday cards etc, but don't put your health at risk for them! Self care is first on your list. Perhaps they should read these replies...hmm..
Like DL - I'd not be visiting again. It was my father's relations who were like that in my life - many many years ago. I decided I didn't have to travel from Germany to the UK to be spoken to as I was there - snarled at by my cousin who had taken over the living room to watch TV so his mother and I and my girls were relegated to the kitchen, Never been back. Don't think I have missed much.
Have a virtual hug.
Fortunately my OH is sympathetic and helps a great deal more now. He carries and lifts things and even does the vacuuming! If he didn’t do that the dust would have to just lie there.Friends are supportive too.
Our next door neighbour , who had never heard of PMR, has been told very firmly by me that I am disabled. It is the only way to make her see that I cannot do the strenuous gardening I did before and she will have to get used to seeing it look messier. She is not best pleased.
Tell her she is welcome to pay for a gardener if it offends her so much ... 
My husband doesn't get it at all. He's 84 and has cognitive impairment. he's told neighbours I've got a bit of rheumatism. The steroids ease the pain and stiffness, but there is still the lack of sleep and ever present fatigue. He doesn't think we need a cleaner, but I've been struggling to keep up with the cooking, laundry, gardening and housework etc. Initially, I thought once a month would be ok for the cleaners but I have decided once a fortnight will be better, weekly would be ideal but too costly. Our daughters understand. I want to downsize and move nearer to daughter for extra support, but husband is adamant he wants to stay in the village, we've got good neighbours I can call on in an emergency, but I don't always see them from one week to the next and never in the winter.
My OH said he didn't expect it to be this way around with me being younger than him !! If only he could see how broken I am that I can't keep up with him any more
Oh Rachel - that is so sad 💔 We none of us know what’s ahead of us but once you get settled perhaps he may understand a bit more, l do hope so x
Maybe he does try or rather did until I was actually diagnosed he doesn't understand how pleased I get when I've managed a few hours work plus jobs at home . I'm probably just being too sensitive I'm very south he's from north says alot !!😂😂
Did you let him read the info post I sent previously to your first post on this forum - might help him understand a bit better - my reply to you linked here -healthunlocked.com/pmrgcauk...moon-face?responses=148312246
No I could try !!
It won’t all sink in, but bits might…
Oh Rachel - that is the biggest hurdle of all….No one - just no one ‘gets’ it - that’s why we are such a supportive group.
There’s a little booklet in FAQ’s under PMR that describes PMR in a very interesting way.
I personally think it’s excellent & good to give to someone who doesn’t understand. See link below…..
MrsN
healthunlocked.com/pmrgcauk...
Thank you will take a look
There is also a DVD to view online, called "You are not alone" and was created by the NE of England charity with it healthcare professionals. Details in this post from Skinnyjonny:
The charity have a 'Symptoms' leaflet that is brief enough for friends and family to digest! You can request copies via the website / contact us. They are also selling notelets that not only raise money for the charity, but give an explanation of the conditions on the reverse. Nothing like a 'subliminal' message!!
You could always quote PMRpro and say "It's not my face that's ill"! I said that once to one of my husband's relatives and several years later, her own mother developed PMR. I think she understands now.
"It's not my face that's ill"
I absolutely love that and somehow missed Pro suggesting that as a suitable retort. Maybe it was before I joined the forum.
I'll definitely remember that one. Perfect!
Trouble is, they have to ask how you are in the first place. Nobody, neither friends nor family, has ever asked me how I am so it's now the "I don't talk about it" illness. It'll be like that very old joke told on the demise of someone - I told you I was ill!!!!!!
Spike Milligan I believe -although he may not be the only one!
Haha!... yes... I think it was Spike Milligan who put that as his Epitaph!You're right!....My husband is pretty good but even he didn't ask how my rheumatology appointment went yesterday! A lovely couple of friends from here did but no one from my family or friends that I see regularly. You just get used to it.
There is another to respond to the comment "But you don't LOOK ill" - "YOU don't look stupid ..."
I can't claim to be the originator of either, I think it was a thread on the Lupus forum where we were dicussing the same problem! There were one or two there who are as wicked as me
😇
One of my sisters every time I talk to her it's oh I've done this at gym I've done this swimming I've walked so many miles. I say to her I'd like to walk down the garden path 🤬😡 but she will say it all again the next time 🤬great for her but please its like rubbing salt in the wounds and I can't have too much salt either!!🙄😅
Borrow a wheelchair - and tell her she can take you for a walk ... But she doesn't really sound very empathetic does she?
I understand how you feel regarding your sisters abilities, and how it can feel hurtful when you compare your activity level to hers.
My hubby is super fit, always announcing when he’s going to (or completes) a session on the treadmill, sit ups, a swim in the pool, golfing, etc. His latest kick is intermittent fasting and losing weight.
Sometimes it bothers me because I compare myself and activity level to his (he does not compare). I have come to understand that fitness is a big part of his life, and he wants to share his efforts with me. He is not intending to brag or compare, indeed it is me who is doing the comparing and sometimes feeling “less than”. That’s often the feeling that is generated when we compare ourselves to someone else. I acknowledge that I sometimes feel sensitive about what I cannot do as it is a reminder of my “pre-PMR” life, and what I have lost.
He listens when I drone on about PMR frustrations, complain about symptoms, share my fears about medications, etc. The other day when I had to stop golfing on the 8th hole, and later went upstairs to lie down and rest, he came up afterwards, asked if I needed anything, and kissed me before leaving me to rest.
I think we both have mourned the loss of the retirement we envisioned for us, the lack of recreation and activities we had included in our future. Shared physical activities were/are especially important to him and a big part of our history as a couple. Now we try to adapt and find ways to enjoy shared time/activities that may not be physically focused.
We are at the stage where I’m encouraging him to find recreation leagues for pickle ball or volleyball this winter because I just can’t commit to such activities, especially the lower I taper. At times I feel I’m missing out or letting him down, but the reality is I am dealing with uncertainty and some immobility. He walks the careful line of support and encouragement without expectation. If he invites me to participate too often, I just tell him I’ll let him know when I fell able and interested. That way it avoids me feeling pressured.
I have lost a long-term friendship over her terrible response to my PMR. After I started losing weight and making healthier lifestyle choices she said downright hurtful things like, “You used to be my fun factor. I keep forgetting you aren’t good in the mornings or can’t stay out as late. “ and “All you talk about now is low carb eating.” I was shocked at her lack of compassion given the length and depth of our friendship. I wasn’t willing to endure those comments so I ended the friendship.
Of course sometimes it’s not possible to “end” being a sister, but perhaps you could share how her comments impact you as a first step to addressing the situation. All the best…how others respond to our illness can be disappointing, but also out of our control. What we can control is how we deal with it.
Sorry for the lengthy response.
Thank you for your post it has made me rethink how I will react to comments and situations in the future . I made the decision when I was diagnosed with several issues I would no longer carry on the so called friendship that drained me so thank you again for the reminder plus reminding myself when the OH has been supportive even if itsjust over little things x
I can relate to all the comments above. My husband is the only one who really knows how much I struggle with the physical and emotional aspects of going from a fit and active 64 year old to a shadow of my former self . Friends and family offer advice " maybe more physio" " have you tried swimming ? " " just up the dose of Pred if it makes you feel better" All well meant, but frustrating. I've learnt to just smile and say good idea ! 😫
This reminds me of when friends of Ruby Wax said during her manic depression...oh why don't you just cheer yourself up a bit!! She apparently replied...oh yeah, why hadn't I thought of that...!!
I can really sympathise with the "invisible illness" thing. It's so frustrating and at times very lonely feeling that others don't / can't / won't get it. It can put a huge strain on relationships if a partner, friend, child, colleague etc. doesn't want to know or works on the "If I ignore it, it might all go away" theory. Or goes into compassion fatigue. I've also got extremely angry on occasions when it's been inferred that I'm not trying hard enough, including to stay cheerful! Grrrr... 🤐😃
And I’m my own worst enemy: “ the spirit is willing but the flesh is weak”- just collapsing after helping at holiday club for 90 kids 😳
Go to FAQ's and look for the link to the Video on You Tube then give them the link and tell them to watch it.
It was specifically made for family and friends.
rachelbell
Live with an 88 year old mom with dementia. She has no clue to how some days I can hardly walk straight. My friends all say I look great since the swelling has gone down on my face. This week i forget to take my meds in the morning. I ended up a crying mess in the afternoon with my husband. I couldn’t even talk. He got a big reminder of my condition. I recently ruptured my tendon to my inner bicep because of prednisone most likely. Others cannot know how it feels on the inside of your body so you have to give them a lot of grace.
I'd had PMR for 5 years before I got pred for a 3x2 week taper at 15/10/5mg. I was flying during a long business trip to the UK, came home and a few days later came to the end of the 2 weeks of 5mg/day. Next day, within hours of missing that first 5mg tablet in the morning, I was in bed in tears of agony when OH came home from work. It finally registered a bit - but I never got much consideration or sympathy. But woe betide HE had a bad back - then it was the end of the world and he couldn't do anything, needed my help. He got rather iffy when I just said "Welcome to my world ..."
And HE was a HCP - a colleague once told me and the girls how wonderful he was with patients. We just subsided in tears of laughter!
I bet my OH was moaning about his thumb hurting !!!! I didn't know whether to laugh or cry
Diddums
Personal choice, but no one knows I have PMR except my wife and son, who lives with us. Not even my married daughter and grandchildren. When I was at my worst, I somehow managed to “carry on”, and attend all family functions, etc. I continued to. and still go the the gym almost every day and do as much or as little as I can, and think this has allowed me to keep a reasonable weight and curtail muscle distraction from the pred. Down to 2.5 now, after 4 years.
In the end I gave up explaining.....but this may sound harsh, I once said to someone who didn't think I looked ill, that you wouldn't know some people have cancer but they do!...I was so fed up with her keep telling me!......
My hairdresser has Lupus, she has had it 5 years, she is now 40, she really, understands because of the fatigue....she said this week to me, some of my ladies don't want to know, but 3 she said like you I can talk to...very sad.....
I just met a girl that I used to work with in the street. We exchanged our diagnoses. Me PMR and her fibromyalgia.
She told me that I looked very well. I retorted 'So do you.' She cringed when she realised what she had done.
I'm wondering how all of you are handling the immunocompromised part of the situation? That is an aspect I here more about than anything since I've basically been staying home since Covid. I think people react like I'm crazy because they don't understand that steroids lower your immunity. I feel like they think I want to be a recluse or that I am doing it for other reasons. I also have had a lot of my friends say they would come out and we could visit outdoors, but I haven't seen any of them! Some of them I'm not sure I want to see them anyway. It has kind of "weeded" people out of my life.
I am far from convinced that pred has a great effect on our immunity - and it has been discussed recently. I have had fewer infections since being on pred. Once you have had the primary 3 jab course of vaccines for Covid then the immunity created was in line with that achieved by healthy people having 2 jabs,
I don't take silly risks and I wouldn't go to a festival - but then, I wouldn't anyway! I wear an FFP2 mask where I am likely to meet a lot of people, in shops and on public transport - where it is required by law here in Italy anyway. They are quite strict on trains - less so on buses in the town I noticed! So I kept mine firmly on my nose!
Thank you for that PMRpro! I've been wanting to get out and about. The seclusion is very lonely when you live alone. I do watch my grandson every other week so that helps but he hasn't had his vaccine yet so I'm being careful for him as well. I also pick up my groceries and avoid going in to the store, on the occasion that I have to, I wear a mask. I have had 4 Jabs for Covid so I guess I shouldn't be too worried about that, although I do continue to wear an N95 inside, Dr. offices, blood work, etc. I was thinking of going to the fair for a concert but wasn't sure if I should risk it. With all the other illnesses that are running around out there. Probably more of a concern when you are on lower doses and waiting for your adrenals to kick in?
Not sure - although when you get Covid you increase your pred dose in accordance with Sick Day Rules. anyway.
Maybe they have been lucky - but all my PMR friends who have had Covid have been not too bad, There is one on another forum, who has been off pred for years now who I gather caught Covid when on holiday in Spain/the Canaries and she has been pretty unwell.
I have had nothing but support and understanding from family and friends but then I have explained and still do explain to those who I feel need reminding of exactly what PMR is and how it affects me. I also wrote an article for my Church magazine and had several people contact me to say “they didn’t realise “ but were grateful to learn about PMR and GCA. I think the more you speak to people about what you are going through the better and yes say to them “thank you I know I might look good.. ..”. It’s important to share the details of this horrible disease as people do care and will give support when they know what you are going through. Take care x
I use the spoons story to explain. My hubby gets that! Search on here for it.
Hi rachelbell. I think I do not have an OH who entirely understands. I think a lot of people just have not heard of PMR - you look ok so you must feel ok.
I think my OH just thinks I am lazy at home sometimes, and complains when he has to unload the dishwasher or keep the kitchen clean. He asked me what I would be doing today and I just replied that I would be lying down as I ached such a lot (a flare I think).
I find I have really good days and then bad ones, often depending on what I have been doing.
A friend of my OH made a comment to other friends that he was quite shocked at the amount of weight I had put on following Lockdown. My OH had not told him about PMR. When I found out, I went round to his house and, diplomatically, told his wife that I had PMR and was on longterm steroids, which can lead to weight gain. You don’t always feel like exercising with PMR.
Yes sad isn't it . I wouldn't dream of commentating on someone's weight gain you never know what private battle they might be going through it's hard enough with PMR let alone the ongoing battle with steriods
Sometimes it is impossible to exercise, whether you feel like it or not!
That's a tough one. Even when you convince a family member they will forget, since we are good at looking normal. Yesterday my 12-year-old grandson asked me about my "sickness" and I explained it. He asked lots of questions, and it so warmed my heart that he wanted to know more, especially about how my pain felt. And, of course, when would I be okay again. ;(
Oh grandchildren can be so lovely! I posted yesterday about my five year old grandson clearly observing my limitations and adapting things like ball games so we can play together. And things like board games or Lego he now routinely puts on a table so that I don’t have to get on the floor. He’ll even move my counters so I don’t have to reach across the table.
He hasn’t quite got to the point of asking me about illness as such - but he did ask why I always move things like spoons and plates from my right to left hand (such a habit I’d forgotten I did it) - OA in shoulder was the answer.
Bless them xx
That's lovely mine a lot older and less understanding . But saying that more understanding than their parents !!!
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