I am a 49 yr old lady who was diagnosed with PMR 15 months ago after living in agony for 6 months. Eventually my GP recognised my symptoms as PMR, I thinking missing this initially as I am on the slightly younger age group for this condition.
So I started pred on a high dose and have gradually reduced monthly following bloods to check esr.
I got my esr down to 6 but recently it went up to 12 so didn't reduce that month (November).
I'm currently take 7mg, I still live with pain slightly but I can tolerate it.
Its usually my ankles that are the worse.
I have worked throughout, run a home and looked after my young son.
So the reason for my post is I have said to my daughter that I am not up to the cooking and stress this year for catering for everyone at Christmas, which has caused havoc.
I'm sure that as this is an invisible illness that no one sees what I go through on a bad day.
My partner is understanding and sees how this has effected me, like others I have gained weight which makes me very unhappy. Although he assures me I am beautiful just as I am, its me that has to start to believe that !!.
So ladies and gents my question really is has anyone else felt that people dont understand ? And if so what action did you take if any ? .
Hoping some may share any experience's as I'm finding this a very isolating illness.
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wooh66
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Welcome to this forum. So sorry to hear you have PMR so young, it can be a very isolating, and is a very debilitating illness. And very difficult with a young family. You need to rest as much as you can, and as you rightly said no way can you deal with Christmas lunch. If you had a broken arm your daughter wouldn't expect you to, but as you say you don't look ill - how many times have we all heard that!
Get the Kate Gilbert book, PMR GCA - A survivors guide. Either from PMRGCAUK or Amazon (kindle version as well) and get your family and friends to read it, it will give them an idea of what you have.
You will lose the weight gain when you reduce Pred - even the fetching chipmunk look, but go easy on the carbs, eating plenty of fruit and veg.
Reading through some of the posts on this forum will hopefully give you some answers and make you realise you are not alone. I'm sure others will offer their advice soon, and please come back with any questions, comments or moans - and someone will help!
I am hoping that long term I may be treatment free in the future but that may also be a pipe dream !!.
I only have the GP to talk to so I will definitely download the book , thanks.
Well yes your correct if my arm was broken I would have more understanding I didn't really think of it like that.
I also have very low tearful times which no one really sees or understands.
It just feels very tough at times and the GP thinks that losing my mum was the start of this and relating PMR to an auto immune condition affected by a shock to the system.
New to all this and hoped sharing with others may help.
You will be treatment free in time- but unfortunately PMR takes its own time- you can't rush it. But as you are young you may recover quicker than some of us oldies!
GP is probably right, lots of us had stressful times before PMR or GCA hit us.
And sharing does help, everyone on this site has gone through, or is going through what you are. Depending on where you live there may be a group close that you could attend. Look at PMRGCA site for more info. DL
Um - I was 51 when it started - so no, unfortunately it doesn't follow. It is said that younger patients tend to be atypical - I certainly fulfil that criterion!
Lots of people say their PMR started after a period of stress, physical, emotional or mental. Stress doesn't help immune systems at all and can often be the final straw. Depressive mood is also part of PMR. It sounds though as if you have a good GP who does understand PMR fairly well. So if the low mood is too bad do talk to him about that - it is pointless suffering when he could give you a bit of a boost.
It will improve - even if you don't get off pred altogether, I am on 5mg and feel well - and I mean that. I can manage on 4mg but I'm better on 5mg so that's where I'm staying. I've had PMR for nearly 11 years, 6 of them on pred, with ups and real downs - but it isn't the end of the world and pred allows me a good quality of life as long as I'm reasonable about my demands. We had a 3 week trip to China in the summer - and I felt better and did far more than could ever have dreamt of. Had I known what the trip entailed I probably wouldn't have booked it - I didn't and it was fine!
I think the sharing and asking for help, support and understanding is my fault as I feel I don't need to shout it from the roof tops and I want to still live a normal life.
But I now realised that this in turn leaves me very alone.
What you are experiencing is not unusual - we often don't look ill - I did before pred mind - but the pred brought out the blooming rosy cheeks! It is even difficult to get doctors to understand how much it affects us though a study published last year called "“I suddenly felt I’d aged”: A qualitative study of patient experiences of polymyalgia rheumatica (PMR)" by Helen Twohig et al does express it very well with quotes from the patients they interviewed during the study. It is definitely something to recommend to a GP who doesn't believe how limited you are with PMR. I don't know if it is possible to get a copy for general reading though.
The northeast of England PMRGCA UK charity has made a DVD called "You are not alone" with contributions from patients, doctors and physios amongst others to explain to family and friends what we go through. I think there are still copies available to purchase via their website: pmr-gca-northeast.org.uk/ There is also a booklet - perhaps short enough to persuade people to have a look? And their website has stories from patients as well as articles from doctors about PMR.
Kate's book does express the problems well - but you have to persuade people to read it and that isn't always easy as others have found but they left it lying around in the hope people would have a look!
I put on a lot of weight - and was at my fattest for my daughter's wedding 3 years ago! However - I have lost 16 kg plus since then - cutting carbs drastically seems to have been the key and quite a few other people on the forums have found watching carbs has helped them avoid putting weight on to start with or, like me, to lose it. It i worth a try.
Be careful - you say you have pain and your ESR has crept up. That could mean you are at just slightly too low a dose to completely manage the inflammation and it is beginning to build up again. You aren't heading relentlessly to zero - you are looking for the lowest dose that does the job. It isn't always a good idea to say you'll accept some pain to get to a lower dose and if pain starts to increase at all don't wait in hope it will go away or you can easily end up with a proper flare and needing to go to a much higher dose to manage it.
My older daughter, a nurse, wasn't very sympathetic at first, telling me I had to "get off steroids, they were far too dangerous with too many side effects" . She has learnt and now sees that maybe pred isn't a very nice drug sometimes (and she does have plenty of experience, her own daughter is on it almost permanently for asthma) but it gives people a life. She also does understand that I am limited in what I can manage. I used to cook as a hobby - I used to do xmas dinner for 30 plus. The thought of doing it for even just the 2 of us now floors me! But I haven't done an xmas dinner for years, we have a better quality steak than usual - fillet instead of rump - or raclette. If the family wanted to come they could cook it themselves - but in some ways I'm lucky in that no-one expects it, when they were children we went ski-ing so their expectation of Christmas is a bit different! They all work in health or social care now - the older one is working on the 25th, the younger one is a paramedic and will work Boxing Day. And we live in Italy so no-one can just drop in for the day.
They'll come round - they probably think that by having a paddy you'll give in and do it all after all. Stick to your guns - the stress will just make you worse again and it really isn't worth it. At least your partner understands - the people you live with see a very different side of PMR.
I don't think anyone posted the link to the spoons theory. Telling this story to your loved ones who don't get it might help. It's great, in a way, to think how much they believe Christmas won't really be Christmas without the traditions you have upheld. But it is time that they shouldered some of the burden. I was still filling (increasingly expensive) Christmas stockings for my grown children and, more recently, significant others of two of them. This year I said, I can't do it any more. Gave each of them a cheque and said, "fill your own (or each other's) stockings." They seem quite thrilled.
Forgot about spoons my daughter who is 41 tomorrow was diagnosed with RA this time last year . I used this to explain to grandson age 8,we tried books,talking, plastic spoons in mug for a few weeks takening then in and out worked
Dear Wooh66, I am a 63 YO female who was at the top of my physical career. I had lost weight , started hiking, joined cross fit exercise and had in the previous year accomplished a feat I didn't think I would be able to manage...I was able to do Pull ups on a bar. I felt powerful, fit and most of all good. Then PMR hit me and I thought it was just too much exercise. About 4 months later and unable to get out of bed and 2 doctors, physical therapy, massage, and seeing a Chiropractor i was diagnosed with PMR.
Fast forward to now. I'm on 10 mg Pred, on my second Rhuematoligist, am seeing a Naturopath and I get Bowen Therapy about once every 6 wks. I have read the PMR book, and the great story of "I know I don't look sick" the story of the spoons which was a great help but the most help I have gotten was from this forum.
My husband and family just didn't get it. I still looked fit as a fiddle, so what I did is I found a great piece from a PMRpro on this site and took a copy of that and some of the other responses and gave it to him and told him when he had time..to read and to read carefully. That is when it sunk in.
I am the main wage earner and have an hour each way commute to my job. It is a high stress desk job (retail) and I try to stand to do most of my work. (sometimes I am too sore to do that.) I also live on a 20 acre farm with a lot to do. I have given up most of the farm work as my muscles have atrophied quiet a bit. I have given up sugar, dairy and gluten and have lost about 25 lbs, that is even with inactivity compared to normal and the weight gain of the Pred. (note my face is still round and I do still have a hump on the back of my neck!). My main thought of this diagnosis was "What can I do to feel better?" Hence going to a Naturopath and limiting some of the biggest inflammation causing things in my life. Sugar is the #1 cause of inflammation. Alcohol turns immediately to sugar so that is out of my diet as well.
I still hurt but I feel I have taken the lead in my disease and my life and have chosen to do all I can to make ME feel better. (It was very odd to hear myself tell my husband that I couldn't do such and such on the farm as I was ALWAYS ready and able.)
But most of all --what has given me the courage and the fortitude to conquer this disease (in its' own time, of course) are the people and the PMRPRo's on this site that have given me the path to wellness with all their great tidbits of wisdom. I really want to thank each and everyone of you. And would like to wish you all a great Holiday and here is to 2016! Sincerely and with love and adoration, Gail.
I have read your comments with great interest as I have also had very similar experiences but I'm not as far forward as you, in that my closest family still don't understand my day to day struggles.
I am going to read the recommend books/articles as it may give me the strength to try to explain to them in a way they may understand.
I think my trouble is I also haven't quite learnt how to say "no" when I need to and on the occasion I have it has ended in the drama which is why I posted my post ! !
I am going to make a very conscious effort to change my diet, sadly I have a sweet tooth and always have but I believe that now needs to change.
I'm now also thinking that maybe I have rushed to my reduction, as at 7mg I still have pain which my GP does disagree with, however I have a goal in sight to hopefully be meds free as I feel too young to live on drugs for the rest of my life.
I hope that this forum will be as supportive and helpful to me as you have found. And for my first post I am very grateful for peoples encouraging and kind words.
We all want to be pred-free - and to achieve that there are two options. One is to wait patiently on the lowest dose that manages the symptoms well until the underlying autoimmune disorder burns out and goes into remission. Pred sort of achieves remission - which is defined as freedom from symptoms - but it is drug-induced remission, not true remission. If you try to manage on a dose that is too low you are wasting your time - it is always a balance of the benefits and the side-effects and if you aren't on a high enough dose you only have side-effects, there are no benefits to balance the downsides.
If you don't take enough pred you might as well take the other option: top taking pred at all and let the PMR run its course. It will be worse than you feel now. NSAIDs (ibuprofen etc) don't really help with the pain - and they come with their own side-effects, some of which can be worse than those of pred. One lady was told by her GP to use ibuprofen (the guidelines suggest it can be used for mild cases) and after 3 doses she was in A&E with a gastric bleed.
The side effects of pred are numerous - but they are well known since pred has been in use for 60 years. Not one of them is worse than the side effect of GCA, PMR's nasty sister which can leave you blind if it is untreated. The uncontrolled inflammation in your body in PMR is also not innocent - it puts you at a higher risk of cardiovascular disease and even some cancers later in life. So it isn't as simple a case as pred is bad, no pred is good.
Even at the age of 49, taking a pill that allows you to have a decent quality of life is far better that not taking it and being in constant pain, unable to do things. I was 51 when PMR first raised its head and for 5 years I had no choice - the doctors I asked didn't see anything wrong. I adjusted my life to accommodate what I couldn't do, if I couldn't drive there so I didn't have to walk I couldn't go. I struggled out of bed every morning Mon-Fri and fell into the car in my swimsuit to go to the gym for an aqua aerobic class in a warm pool - after that I had a fairly good day stiffness-wise but every time I sat down I would fall asleep with the fatigue and it took several minutes to be able to walk when I got up. Without the car I couldn't get there - and when I was stopped from driving for a few months (because a doctor didn't ask me the questions she should have) I seized up altogether. It was awful - I crawled up stairs on my hands and knees. The first 15mg of pred left me able to walk downstairs and back up properly in under 6 hours. The rheumy didn't want to hear and tried to get me to take another RA drug - but the GP and the rheumy here in Italy both agreed it was PMR.
I don't LIKE taking pred, none of us do, but if I need it I'll take the 5mg I finally can manage on after 6 years of pred for the rest of my life rather than risk going back to where I was 7 years ago.
Just another small reply...I too was a sugar feind. And that is putting it mildly. I was always on a diet mostly because of my need (and it is a need-addiction) of breads, donuts, candy, chocolate and on and on. But because I HAD to figure out some how, some way to lessen my pain with out big drugs I did what my naturopath asked of me and it became My Plan. It has worked and it has also given me a bit of control. Maybe wait for the holidays to be over and then give it a month or so and see if you don't feel better.
As you read through these posts, maybe you will be able to find one that you can really relate to. Print it out and give to fiamily. And please learn to say No (in a nice manner..) I will say it again, when I found the post and replys that heavily mimicd my situation I gave it out. That is what turned them around. Good luck and Happy Holidays!!!! Gail
Hello Wooh66 - Learning to say "no" so people hear it is hard, but very necessary. I have never liked to ask for help, and have learned the hard way to ask when I need to. The payback for overdoing it is just not worth it, so ask away, or the task can wait. Read everything you can that's recommended on here, it's all really good stuff. Best of luck in your journey, and feel free to vent any time!
I agree with you about the invisible illness. Yesterday a neighbour said how well I looked but I didn't feel the same inside. I have found Kate Gilbert's book invaluable along with the help and advice on this forum.
What I have done recently is buy the much smaller booklet 'Living with PMR & GCA' and the 'You are not alone' DVD from pmr-gca-northeast.org.uk. This was to give to my son and daughter and their partners to read and / or watch. My husband has recently read it and he learned more about the conditions than he knew already. He can recommend it! I also bought the little lapel badge they sell and a few people have asked me about it so I am able to explain about the charities for our condition.
I will be lending them to my family to read when we meet up next week. Maybe they will understand that while I can't do what I used to do, I am trying my best with the much less energy and movement that I currently have.
I am on 9 mg after eleven months and like you have put on weight. Will need to really address what more I can do and start on January 1st, although I have reduced my food intake by using smaller plates, more vegetables etc., going to Aqua aerobics and doing short walks each day.
I wish you all the best for the festive season and a happy and healthier new year.
PMR is a stubborn condition. I have had it for four and a half years. My friend had it about 15 years ago and came off preds after two and a bit years. I don't think she can quite believe that I still need it! My pred dosage has been up and down. Recently I reduced from 5 to 4.5 and after a month I am wondering if 5mg might be 'it' for me as 4.5 seems to have coincided with more aches and pains, though I did wonder if those might have been caused by the weather. I am also very tired, particularly sleepy in mid to late afternoon. I had a blood test last week but haven't got round to phoning for the results yet. I doubt if they will be very enlightening. The surgery would have phoned me if an issue had cropped up. Meanwhile I am going back up to 5mg to see me through the festive season. I am a lucky granny since I am going to son and family who don't mind if I have a nap every so often!
The extra fatigue that is sending you to sleep may be that your adrenal glands aren't catching up as fast as you are reducing your dose. Exactly the same thing happens to me between 4 and 3.5mg - and I feel far far better at 5mg, I'd just say I was OK at 4mg, no pain but far more tired. After discussing it with my "rheumatology trained) GP I'm sticking at 5mg until the spring. Then I'll try again.
Thanks Pro. That's pretty much what I thought would be at the bottom of the tiredness. On the plus side, I have never had any problem sleeping at night, even on my top dose of 20mg.
No, I honestly don't think that I have slept any worse when on pred than when I had PMR and no pred. PMR led to weight gain, mood swings, bad sleep, sweats and fatigue. So being on pred wasn't going to be much different was it!
I understand that none of us sufferers want to be on meds of any type and if we all had a magic wand wouldn’t we all use it to be pain and medication free.
I am going to chat to the GP this week as maybe trying the old dose new dose routine may help on the days that I feel some pain. As I said I can live with the pain at the moment just when I have overdone it then that’s when the pain isn't so good. But then that is down to me with learning my limitations and that I need to put more thought into what I should and can be doing.
However I am feeling 99% better then I was at the point before being diagnosed and I have also crawled up the stair and struggle to get off the sofa, climbed out of bed in the morning like I have been in the gym for days on end with every muscle in my body tense.
So life is much better, I just need to stick to where my body is coping and then do what I can to stay as healthy as I can.
I did also have a very low B12 which I received a course of shots for so this is also monitored by my GP. This was detected after feeling constantly exhausted and my hair loss was very alarming.
I haven’t been referred to a Rhuematoligist and maybe again this is something I should ask about.
As it has been said this is a stubborn condition and we have to run with it whilst "it" runs its course.
If you are doing well in management of your PMR with your GP there is no real reason for being referred. And it sounds as if your GP "gets" PMR. The chances are it will be at least a few months until you get an NHS referral - it won't be any better than urgent, that just means "sooner than routine".
Mind you - we complain in the UK about referral times but people in the US have told me of up to 5 or 6 hour drives to get to a rheumy, either because the local one didn't take their insurance or was full and not taking new patients!
Hello and welcome - I'm a bit late in coming in, but have been Christmas shopping (for as long as I could stand it) then had to put my feet up for a while.
One thing I would say, is that having always had a strong dislike of the winter months, I would never reduce my Pred any time between December and February, I stayed on the same dose for those couple of months. For those who don't like the cold and snow, wet, cold, gloomy, cold, (did I mention cold?) I think that in itself is a major stress point and when you add in all the business of Christmas as well, it can be overwhelming. I always begin to feel better when January is out of the way and I can see the days lengthening.
Stick to your guns as the others have said. You can only do what you can do.
I have been on 7mg since October and I normally reduce 1mg per month if my esr is good. However November it was raised so no drop was made. I'm due at GP this week for bloods but I am thinking my esr will be up as I've ached more. So if I have to stay where I am or up the dose then so be it. Even from this one post others experiences and knowledge makes me feel better.
The stress of christmas lunch and the festive period isn't probably helping either !!
What a coincidence. I have just had a brief conversation with a friend who asked me if I had taken part in any of the events our community choir was in over the past couple of weeks. I said no, and explained that I find it just too tiring. One of the events involved standing outside for an indeterminate length of time carolling to people who were picking up their pesticide free Christmas trees. When I explained my fatigue it became apparent that although I have told all the people in that particular little group which meets every fortnight at one of our houses, it had not registered with her. I told her what I had. The usual conversation, "Oh is that like fibromyalgia?" etc. I suggested she look it up and then she would have some idea what I have been going through for the past couple of years, explained this was why I was often reluctant to host the group because it was hard to face the cleaning up - vacuuming, etc.... Seems like one has to keep on at this. It's true. We don't look ill, we may even look better than usual, so no one knows that we just might be tired, if no longer in pain, inside.
Hello wooh66. Like a lot of us, your condition wasn't recognised for a while, so you suffer, feel ghastly, and then finally you start on high dose of pred and work down. However, you do seem to have reduced your pred dose rather rapidly. Changing down every month is quite a lot to ask of your body. The fact that you still have pain would suggest that your reductions have been too much, too soon. Although pred brings its own problems, weight gain being just one of a long list, it should at the very least clear your pain. If you still have pain, you should speak to your specialist/GP and review your current pred intake. I've been on reducing pred for 3 years and am currently on 5mg where I've been for 5 months. I have no pain and feel reasonably well, although rather tired. My specialist told me he might (only might) reduce me to 4 mg next month. We shall see. So, I think the general view is 'Take it S L O W'. As for Christmas, take it easy. You want to get better, so be gentle with yourself. Tell them that catering for large numbers can't be on your agenda any more. It's someone else's turn! And don't waiver.
Sadly it doesn't matter how often you might say what you have and how you feel to some people its often taken with a pinch of salt and I think they have no understanding of the condition, which in fairness why would they. It only helps if you can explain or they can take the time to look it up. Its day to day tasks for us that are a challenge but again that's not always easy to get across. I hope your friend reads up on it.
I've just read spoons and quite honestly it made my cry, if only we could do this to everyone around us and make them see.
Hi Greenheath sadly I think you may be right, today I have had an awful day and I'm beginning to think I may need to up my dose. Maybe I have ran before I can walk. I started off a bit stiff this morning but by this evening I'm in pain. My ankles are huge, my shoulder is aching and I think I'm now in for a restless night. I also think what was mentioned earlier regarding the winter months may be very true for me.
Unfortunately no one else wants to take their turn for Christmas catering so they can all go hungry!!!.
Hear hear! I am so lucky that my son loves to cook Christmas dinner - he has done this since he bought his house a few years ago and has a large dining room with a huge table. When I was growing up my father insisted to my stepmother that in Poland the man of the house always cooks Christmas dinner (I have no idea if this is actually true) so she got the day off! I wasn't smart enough to encourage my husband to carry on this noble tradition.
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