I found this site helpful, in that it was good to talk to people who are fellow sufferers.Now I’m beginning to get the impression that people are getting too absorbed in the illness. There’s a world out there, rest when you must but live life. 😀
Cheer up: I found this site helpful, in that it was... - PMRGCAuk
Cheer up
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Mipsie
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Hi
I joined as wanted more information about my Health condition
I don't class it as a illness
I have made some wonderful friends and enjoy coming home from work and unwinding with a cup of coffee and my feet up reading post.
Agree that thier is a life out thier but we are all individual's and PMR effects everyone differently .Some may have other health conditions as well to cope with and age may be a big factor as well .
But I am positive that all of us live life to the fullest when able but resting is just as important as you say.
Best Wishes
Rose
DorsetLadyPMRGCAuk volunteer
Hi,
I think you’ll find that we “oldies” do tell people to get on with life, but maybe in a slower lane than normal! And also impress that life does return to normal - eventually.
Of course, some patients find their PMR is very debilitating especially if they have other health issues or are caring for a sick loved one as well.
Plus you must also consider that not everybody has such a positive outlook on life as maybe you do. They may not be surrounded by loving friends and family and are coping with their illness on their own.
I'm with you on that one Mipsie. When one doesn't feel too good one can rest up. No illness is good but we do still need to live life.
Well posted.
I think you’ll find that we all do our utmost to live our lives the best way we can, albeit in a slower lane.
How long have you had PMR/GCA?........
Some of us have had it for many more years than l who’ve had it since October 2011 & a Breast Cancer Diagnosis in the middle resulting in a Mastectomy & Chemo which had also left its mark in my joints.
I like Rose like to dip in everyday to see how folks are, I’m currently resting on the bed before dinner in an hotel as tomorrow we are going to see The Terracotta Warriors in Liverpool but I’ve been called into see my GP as l have some very high blood levels & markers so l have to divert there first thing.
I’m doing my best under very exacting circumstances, l always try to maintain a cheerful & positive outlook no matter what’s thrown my way but l find your suggestion that people are getting too absorbed in illness & to live life offensive!.......
Rose54 in reply to
You will love Terracotta Warriors
Was lucky went to China to see them 25 years ago
Met the Farmer who reported finding them and then was put in charge of the dig
Trip was my Sons 21st Birthday present
Have a great day tomorrow
in reply to Rose54
Thanks Rose, Liverpool’s not as far as China & we have our friends here with us from Connecticut, so looking forward to it!
How fabulous a memory, I went to Liverpool earlier this year for this , lovely day with a friend.
I need to go to Liverpool and see the warriors before they go away-on my list 😊
in reply to Rose54
Hope you got a book signed by the Farmer. We did and made a video of the whole exhibition. I don't think you can take video any more. It certainly was an experience.
Rose54 in reply to
No I missed out on that one
A wonderful sight
in reply to Rose54
Hi Rose54
As I said I made a video of the visit and made it into a small film on DVD. One of my hobbies is amateur film making. This might sound strange, but if you would like a free copy (no charge) and if you can trust me I could post you a copy. Just private message me.
Pete
Rose54 in reply to
Many thanks for the offer
We have loads of photos that we rarely look at and no DVD player
but it is a very kind of you.
I would love to go back one day
I can remember standing in a railway station traveling down to see the warriors with Chinese people coming up and touching us, apparently a lot had never seen white people before and our bright clothes fascinated them .
Did you do Great Wall as well
in reply to Rose54
Yes, twice to the great wall, once on business and later with the OH. I was in Beijing on business on my 50th birthday. The guys in the office took me out for a slap up meal and then said" tomorrow your treat is a trip to the Great Wall"
My job at the time was business development manager for a well known aircraft manufacturer. I had to build business relationship with counterparts in China. A very stressful job. But the experience was priceless. 😃
Oh yes I had forgotten them ,I was going to see them and new job things got in the way ,Thanks for the reminder . I will get to see them too .It will stop me sitting round after work and getting self absorbed 
Isn't that what this forum is all about? Discussing the illness, supporting those who are struggling and sharing our coping strategies?
in reply to HeronNS
Well said Heron x
Exactly...
People who are alone feel supported, less afraid and develop coping strategies from the experience of others. We laugh and share momentous experiences like my son’s wedding this weekend. I am grateful for the people on the forum...their dogs, gardens, travels and things related to their illness and not related,
I think you will find if people are in a lot of pain it actually makes them feel better to know that others may be struggling too and also find out what can help. It can be difficult for a lot of people to “live life” as you suggest when they are in so much pain and have no support.
This obviously depends on your perspective. I often read what others get up to, holidays, shopping trips, concerts, even AGM, and just wish!
The illness is what it is all about on here - that’s why it’s a “health” forum. We discuss every part of the illness, we listen, commiserate, help, advise whenever we can.
We also have a lot if ‘fun”, cheer people up when they are down. pick them up when they have fallen, rejoice when they have good news to impart.
Exactly...
I always live my life to the best of my ability.l love being creative and belong to several organisations.l have found this site very informative and above all friendly.Some people are really not at all well and having to cope on their own,it must help them to know that there are others that care about them.Also Uncle Mark B’s light hearted ramblings are a real tonic,it is not all gloom and doom on this site,l do not feel as well as before PMR,but l try to be cheerful and l appreciate each and everyday.
Thank you Grants, the cheque's in the post.. 
I should also add that over the last year I have been housebound with district nurses visiting three times a week. I was unable to drive or even get out of the house without a wheelchair. It is extremely depressing and frustrating and something like this forum can be of great help. I was lucky in that I had very good friends who cooked for me, shopped for and visited me bringing goodies. I am now improving thank goodness and am back to driving and swimming and generally living life again. However I will never forget what it is like to be in excessive pain and unable to live life. I know a lot of people are in a lot worse position than I am and I would never consider telling them to get out into the world and live life. I have learnt a lot from the last year.
Good for you piglet, how lovely to be swimming and driving again. Thanks for sharing your encouraging experience of returning to some aspects of a 'normal' life. It gives me hope of following suit at some future date.
I must admit, sometimes I feel it is too much to do something as I get dreadfully tired not just from the PMR, so I do have to force myself to do things. It normally pays off although occasionally I overdo it!
Hey Mipsie! You make a good point however I don’t think that I am alone in using the site to moan, groan, question, complain, laugh, tease, love, comfort, empathise ( I could go on) so that I can go out and live a better life. I don’t really bother anyone else with my condition, well maybe long suffering OH. X
PMRproAmbassador
The site provides a forum for whatever the users want. At the start it is natural to be very introspective and since there are continually new people joining you might get that impression. There have been several hundred new contributors just in the last year - mostly seeking information. I can tell you from experience as one of the people providing that information - there is no other way of disseminating it. There is too much activity to expect people to read back as I did 9 years ago on another forum. If I dont mind typing the same bit of information 10 times a week - others can read it
You may be able to do a lot - many can't and then the forums provide a vital lifeline until they are able to get back to a semblance of normal. Others are terrified and need reassurance to do that. The forums provide a support group for those who can't get to a real life one and at the moment they need it. Those who don't can skip over the post. I read every post - but not all to the same depth.
Thanks for providing a life line to so many sufferers. Ditto to Dorset Lady!
Greetings Mipsie
Well. what to say?! I'm sure you'll get lots of responses to this one.
First, I think I understand broadly where you're coming from in your brief Post. I.e. (sic) 'try not to become / make yourself a 'victim' of, or become all-absorbed in PMR (as opposed to GCA - a potentially very different scenario), and try to live life to-the-full despite it'? Yep, I tend to agree - in principle.
That said: maybe many of Us Lot teeter on a psychological tightrope with these types of complex and unpredictable illnesses, especially in the early un-charted stages? On one hand, wanting to deny or under-play the fact that we are seriously and often unexpectedly chronically ill. 'Ill'? Yes, seriously, and chronically ill in many cases. On the other hand, equally wanting - or in many cases needing emotional support, a sense of community, reassurance, shared experiences and the expertise that these types of forums can bring.
I, for one, have sometimes questioned whether I was becoming hypochondrial ('all in the mind') when battling with some of the invisible symptoms of PMR - the crushing bouts of Deathly Fatigue in particular. But, with the help and support of You Lot here, I realise that I wasn't losing the Plot and my symptoms were (and sometimes still are) Real.
As others here suggest, I'm certain that the vast majority of Us Lot use these types of forums for therapeutic / info and experience sharing purposes - and not to indulge ourselves un-necessarily in doom and gloom. The forum also seems to be a safe platform to let-off steam about whatever: from symptoms, to spats with GPs, and all manner of other things PMR and GCA. Often, with at least a hint of ironic humour thrown into the ring. And sometimes, with an out-and-out desire to find the Lighter Side (as I do, for my sins). In my books, that's all ok.
I read your earlier Posts which were written in a similar spirit to the above - but I notice that this one is distinctly in the past tense. I can't help wondering if, perhaps, you are trying to move-on emotionally from your 10 year-long battle with PMR and now want to distance yourself from your experience by writing this rather controversial Post? In a small way, I can relate. But only in a small way. Sorry...
Either way, please try to remember that there are many others here (of whatever age, and in whatever circumstances) who are reluctantly joining the PMR / GCA 'Club' for the first time and / or still struggling to come to terms with the reality of being a member of it.
I, for one, have been there and got that T shirt - despite my recent, welcome and continuing improvement in PMR symptoms. Fingers crossed...
I hope this is a balanced, objective and helpful response, and I wish you good luck on your on-going Journey - wherever it leads you to.
With Best wishes
MB
So well put. Not used to your serious posts!👏😀👍
Thanks Sandy Well, I do have a serious side... sometimes
Well said.
I find this site much more than people absorbed in their illness. I find it as a meeting place for people who have something in common, something that a lot of people in our lives know little about. It is a place for sharing information and learning. It is a place to come when you are feeling bad, because people on this forum have been there and understand and commiserate. It is a place where people share their victories and happy times, share photos of grand babies and gardens and dogs. I am so happy I found this forum and the people on it.
Hi Mipsie,
Yes people can get absorbed in the illness, but only because it and the accompanying fatigue can be so debilitating. All they want is the knowledge to enable them to help themselves, and eventually get back to a near normal existence.
The knowledge imparted is brilliant, and the sympathy when people are low wonderfully calming.
What would we all do without this forum? And this from someone who usually runs a mile from such things.
I find it a fantastic support.
Very few people with negative attitudes here !
Well said, Mary - I agree.
Too absorbed in the illness? ... I wouldn't say I'm absorbed just stuck with it at the moment but living life the best I can.Sometimes I'm a bit limited to what I do out there in the world but I try and live life and enjoy it thank you.I joined this site for information and help from fellow sufferers of PMR as my doctor was pretty useless with information and it was obvious he didn't know much about it as he was 'googling' as I told him my symptoms.At my first appointment relating to PMR he just wanted to talk about christmas.So I've found this site so helpful and informative and we can all ask any questions we have.
Agree entirely, Sandradsn. This site has made all the difference. It's so reassuring to know that what we're experiencing is not weird. Nobody else, including medics, seems to know much about it, or even want to understand. Here there is understanding, info and support. Am so grateful for it.
Couldn't add anything to previous comments. Hope you are ok yourself Mipsie. ATB
I’ve just read your previous posts and realised who you are! A very feisty lady in her 90th decade giving wise advice to those who can heed it. As I get better,I am alert to the almost “ hobby” I am in danger of making of this condition. I for one have cheered up ma’m. 🌸
Dear SJ I have just re read Mipsie’s previous posts now too and agree with everything you say, relates to me exactly.
Mipsie -you have put things in perspective for me. Thank you. All good wishes.
Hi Mipsie
I'm pleased you found this site helpful, just as many many more have, I can only say that nothing is ever as it seems from the outside and 'getting absorbed in the illness' is par for the course initially isn't it? It is a serious illness and the main treatment adds to the frustration as it can make you feel good initially then worse for varying reasons as we are all different. I didn't find this site until the 4th year of my illness, and had other illnesses (breast cancer) to contend with making progress with my GCA/PMR more hampered. I also care full time for my husband. I now don't feel guilty about taking short breaks as long as I have help at home. I now plan a lot and again it's down to individual experiences you can only get from a fellow sufferer. The help and advice from this forum has enabled me to move forward much more quickly mentally. I understand my illnesses much better than I ever did prior to joining, enabling me to to live my life more fully and I thank everyone for that. I truly hope you are feeling much better but please remember you must have been in a darker place one time. There are a lot of newbies coming in daily wanting/needing to know more about their illness and what to expect. I know there are lots that have been able to live their lives more fully as a result because they tell us so, even though they are so ill. Everyone's circumstances are different, I for one do not have only myself to care for. It is a real genuine community and I don't judge you for your comments but we all have a right to reply. Keep well Mipsie.
Morning Mipsie
Maybe it's not always about being absorbed, just curiosity and help and encouragement - both giving and receiving? I personally don't look at PMR as an illness - just a damn nuisance. I hope you're well and continue to enjoy living your life to the full. Best wishes Suej
Hi Mipsie, sorry you feel this way. I feel that PMR can often be almost an invisible illness to many of our family and friends once we a on medication and the dreadful pain and stiffness subsides a bit. But it is still there and very very real to the sufferer. It is so nice to read posts and know you are not alone. Personally I live with a husband and adult son for who I am a carer and their conditions are not only are much more serious but also much more visible. I often get overlooked! Not complaining, it is what it is. I struggle on fatigue days but know I am not alone and I also know that a lot of people on this site are also much worse off than me, it helps me to keep everything in perspective and saves my sanity.
I'm sailing the same boat as you Linda. Carer to OH and adult son........being on this forum has helped them, particularly my OH to understand the condition better as I quote other members problems, pains and perseverance through what I am learning one year into it is really quite debilitating and not over and done with in a year as I was told at diagnosis! Keep going, girl!!
Thank you MamaBeagle. It is so sad for our children to have conditions as adults that they need so much support from us still. My son had a malignant inoperable brain tumour at age 17 and has a VP shunt fitted. He is now 50 and lives at home with us. His tumour was treated with radiotheraphy only and he now has the long term side effects from that. He has had multiple brain surgeries over the last 4 years and we are by his bedside 10hrs a day. He is deaf as well. He has had 2 strokes and a heart attack also. We as mothers do the best we can and put our children first always. Keep up the good work, but don’t forget to take care of yourself too.
Oh! Linda my worries pale into insignificance. Thinking of you. Are you getting any respite care at all?
Lets' all have a sing song!!
bing.com/search?q=always+lo...
Many thanks Primarose. Spot on! Always was one of my favourites, and haven't heard it for ages.
Hi BonnyQuine, that song always gives me a lift.
We are fighting serious life threatening diseases here and we need a little respite now and again.
Here here. Mrs Nails. I’ve lost my job and my house as a result of it. I’ve lost everything.Can’t work and in my 50s so I can get no income as it’s deemed I can . I’m back at my mums which is not good. Can’t get a doc to tell me how to manage my pred and my rheumatologist has left. Yada yada yada. I’m just gonna kick my heels up and sing Zipadee dooda and it’ll all be right. Do you seriously think resting up is going to change these things. I agree. Mrs Nails. How patronising and offensive. It just shows a lack of understanding that it affects everybody differently and that the life changing circumstances caused are not in people’s heads they are very real.
Actually I apologise for my rant there. I should not even have dignified this with a reply.
You are angry and you have every right to be. These diseases are life changing in all aspects. I just feel lucky to wake up alive and live another day!
Thanks for your support. Unfortunately I’m not there yet. I’ve lost my life, my looks, my figure and every door to any kind of hopeful future seems to be slamming shut. In the midst of a really bad relapse just now with little or no medical help and I’m really sad to say for the first time in my life I feel I’d rather not wake up. Hoping I’ll get through this. Sorry this all sounds me me me.
in reply to Singr
Hello Singr
Sorry to read you are so down at the moment, it’s awful when so many things are taken away from you, even when you look in the mirror, it’s not ‘you’ anymore.
What dose of Pred are you on now? I’m back up at 10mg & the little chubby cheeks are reappearing & that rounded look to my back, hate that!
Called in the Doctors today, my CRP is higher than its ever been as they’ve stopped the Methotrexate as it was affecting my liver so in a bit of a catch 22 situation at the moment.
Hope you start to feel a bit better soon, start a new post with your dose & how you’re feeling etc & see what suggestions abound to help you.
Mrs N x
Singr in reply to
Thanks for your reply.In the absence of any medical advice I’ve increased from 8-10 mg. Still sore, still emotional. I’m deciding to tackle the weight as it is getting me down. Considering trying the Exante diet. Saw it in TV. The diabetes fix.
Sorry to hear about your high results. Hope they level out.
in reply to Singr
Thanks Singr
I think the pre diabetes or improving diabetes diet is a good idea, l saw it on TV too & have kept the program so me thinks Monday will be a good day to start!
I now have a hamster face, didn’t realise until had Photo with friends this week! 😱
Take Care
Mrs N x
I did wonder, if you had missed the funny items on Vikings, MB and Tedski, the things that people have tried to do, the way that 90% still go on holiday. However, I don't really need to list them all as most of the posts below have covered it all - except for one thing -
RESEARCH which gives us progress towards cause, cure and more friendly medication and top of that list is SUPPORT mainly because I won't live to see either but someone somewhere will crack it and future generations will benefit.
Why Support at the top the reason is simple. Some don't have families, are elderly, live out in the sticks, lonely and need someone to reach out to as they have no-one, you have all read the figures on the growth of loneliness and sometimes the net in the middle of a long lonely night can be a blessing.
If there is no actual support group near where you live, a virtual support group is the next best thing. Finally, you don't look sick..........................
Without this site, and two others, we would never have been able to help to undertake important and ongoing research into both PMR and GCA. Without the input of actual patients from this and two other forums progress would have been a lot slower.
Nearly 11 years ago now, there was research going on, but not much, the main reason as some of us could see was because the figures for incidence appeared to show and still do, 97% were female and 3% were men who were diagnosed with PMR, the figures are slightly different for GCA - but not by much. Women were and still can be as not the primary bread winners. Therefore often can be sidelined, perhaps unconsciously in many things in life leading to a lower quality of life.
It appeared that in males the PMR went into remission within 2 to 3 years and women longer and in the main were less complicated. It was also thought that the age range was late 60's onwards. In fact the diagnosis procedure at that time, said so clearly.
Because of these three sites and information gathered by volunteers, that age range came down and those guidelines were altered down to 50 plus. Other items came to light and then more people became interested. So more research, more support groups etc. And, more importantly - more patient power. And women came to be seen as absolutely essential for the workforce. Not they had never been essential, just not recognised as such.
I can only give you the first paragraph on this site, as it is a 9 page document, if you want a copy, then send me a PM.
The Furious Five backgrounds in general:
All women - 4 were working, 1 was retired. 4 had PMR and one had GCA and all with husbands and families and were carers for elderly parents. 4 of them are still very active and two of them use this site.
One of those women is halfway into her 80th year and is just about knackered, I can say that as it is me.
"Furious Five’s Trans-Atlantic Hunt over Baby Boomers Mystery Illness
IS IT A FIRST? INTERNATIONAL ONLINE SURVEY LAUNCHED DEVISED BY PATIENTS FOR PATIENTS LOOKING FOR A CAUSE AND CURE FOR MYSTERY ILLNESSES PMR AND GCA (POLYMYALGIA RHEUMATICA AND GIANT CELL ARTERITIS)
(NB I have deleted the contact numbers as they have all changed since 2008)
Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. It could be the biggest online survey (quantisurve.com/cgi-bin/pmr... of its kind ever and may help reveal the cause(s) of two debilitating, life changing illnesses.
The link to that survey and ongoing results are still in operation.
So yes, we have a life outside, but I for one, am extremely grateful the PMRGCAUK (a registered charity). setup and run this forum and it has grown quickly.
I am also grateful that when we need hard or soft information from people who actually have those two illnesses. We know where to come to ask and we get it.
I know I have written a whole heap, but I wanted to add how important, good well-administered websites can be and they are few and far between in my small experience on the net. So I am not going to apologise for the length.
Mipsie,
I am glad you found the site helpful and this post has led, whether you meant it to or not, an interesting thread and I can hope that your particular tunnel which does have a light at the end of it and it is not long. We do know there is a whole world out there, it is where we all live for the short time we are on it and I do trust that the responses will clear your 'impression'
Well - I don't think you should judge people's "other" life and how they live it - just because we come on here for help, discussion or whatever does not mean thats ALL we do! This is just a part of it! And for me a very important one. The people on here have helped and supported me no end! I would be lost without it. And thats from someone who has had two other very debilitating conditins for years and never went on a forum or even spoke about them. But this PMR - I needed help! Best wishes.
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