I’ve just realised that it’s two years to the date today that I was diagnosed with PMR. Just had a little cry by myself😢. I don’t normally wallow in self pity but sometimes it helps to let it all out. Currently going through a flare and have shoulder surgery in three weeks time.
Thanks to everyone on the forum for your invaluable advice and support. I couldn’t do this without you all. Onwards and upwards🧗♀️
No, no - you've got it wrong: Onwards and DOWNwards ... Or so we hope 
I'll second that!☺
I don’t blame you having a little cry. You have had 2 years of it. I have had a little cry and haven’t had PMR a year yet. It’s the fact it seems to go on and on. It sometimes feels too much when other health issues pop up too! As you say, this forum is invaluable and has helped me tremendously too so much so that I have become a PMR member! Every good wish for your surgery will be thinking of you sending you lots of good vibes. 🌸🌼🌺
Don’t know what we’d do without PMRGCAUK forum. ❤️
That’s not self pity it’s self care. It’s a rotten, continually, challenging disease and a cry does you good. You’ll get there. X
Thank you Jane. I was doing ok until I realised it was the two year anniversary today. I suppose for some strange reason these days are more significant. Also no distractions for me today as OH at a football match and the grandchildren left earlier after spending 5 days with us. I’ll be fine tomorrow x Off to get a Magnum out of the freezer 😊
Find a soppy film on Netflix and have a proper howl. I watched the old film “Gaslight”from BBC I Player the other day and ended up feeling furious at everyone in it, it’s funny how we change.
Yes, I was only thinking the other day that there are dvd’s still in their cellophane that we haven’t been watched. I was saving them for after my surgery when I’m incapacitated but I may start sooner x
You need to be distracted with a girl’s film. No car chases or violence. Tissues at the ready.
I can see I’ve got Bridesmaids and Brokeback mountain. Not sure about them? We do have Netflix so I’ll interrogate that. I love sport so mostly I’ve been watching the athletics and I like the 100 cricket.
My 2 year anniversary on July 5 2020. Remember sitting at kitchen table looking at 3 x 5 mgm Prednisone, Hurting so much … 😳
Bridesmaids is very funny and warm.
The Wedding Date is one of my favourite girlie films, although it's american, it's set in England, British actors, Sarah Parish, Jack Davenport and Peter Egan are in the cast. I've got the new Downton Abbey film to watch when the European Games finishes, husband is an athletics fan, so we've watched the World championships from Eugene, then the Commonwealth. Hope you feel better soon. I've had a "weepy" week and it's only 3 months for me so daughter took me out for coffee and cake yesterday, probably not ideal for the developing moon face, but as my great granny used to say "A little of what you fancy does you good!"
Thankyou for the film suggestion. I too have been watching a lot of sport lately. My husband is taking me out for lunch today so that will be nice. Don’t worry too much about the moon face. Mine is much better now I’m on a lower dose of Pred. 🌺
If you enjoy sport then the one about The Williams sisters is good to watch.
I do like tennis & I like the Williams … I’ll give it a go thank you. August TV is a bit dreary always I find - hence Netflix!
Looking forward to Bake Off starting! Those poor contestants in this heat in the tent!
Bridesmaids is hilarious. Especially where they’re trying dresses on at the bridal gown shop ❤️❤️😂😂
Have you seen ‘Love Sarah’. on Netflix? Lovely British film with Celia Imrie… uplifting, and a bit weepy!
Thankyou. No I haven’t seen it. I’ll see if I can find it. I’ll have to send my OH upstairs to watch our other tv. We don’t have the same taste in films!
🤣🤣 - … it’s sweet & definitely a ‘girlie film!!
Definitely not one for him then 🤣
Er…. no!
Or a good comedy, nothing like a laugh!
👍🤣
True! Especially a NZ comedy. So funny!
Maybe it’s the Pred that makes you furious! It’s made me very irritable today and cross and stuff myself with carbs! It must be the 1 mgm Pred up ⬆️ today. Down tomorrow for whole week🙏…. You’re getting really organised! Well Done. xx
It could be the Pred. I get very emotional and irrational at times. I feel so sorry for my OH. On the higher doses my personality definitely changes. Other people don’t really notice that much but those who have to live with us suffer the most. Good luck with the taper x
No I think it was the harrowing portrayal of coercive control. We understand it now. I used to work with the victims of domestic violence.
Oh Tiggy, I feel for you. Magnums have been my solace too! To hell with the waistline when it all gets too much. You'll soon be over this blip - keep the freezer full! xx
Hi Poshdog (love your name). If I succumb it’s normally only a mini magnum but yesterday was a full size one😊. I’m feeling a bit better today thankyou.
So glad you feeling a bit better. It will be 6 years for me in May - hate to think how many Magnums I will have consumed by then! Poshdog was the name of my feisty terrier in the pic - sets me a good example!! xx
Hi Tiggy, had my two year anniversary in June and as Pro has reminded us "onwards and downwards", as we know though that doesn't always happen. Had a busy couple of days but if no dire reaction tonight start 4.5mg to 4.0mg tomorrow. No guarantees and if it doesn't happen tomorrow then it will at sometime later. As you said this forum is brilliant with our three superstars just amazing, but the contributions from all the members help us to realise we are not alone, someone somewhere generally/always has an answer to the strangest/most difficult/technical questions and worries. And ( shouldn't start a sentence with And but hey ho,) we are only two years in and doing OK, many here are getting closer to five/ten years plus. It's what it is and no point fighting/worrying about it.
Hope all goes well with the shoulder surgery and hugs and best wishes.
Thank you, you’re right. I keep telling myself “it is what it is”. My husband who is very supportive keeps telling me there’s no point in looking back as you can’t change what’s happened but it’s hard not to do that. A year ago I know I was feeling better than I am now. I feel I could cope better with PMR if the progress was linear. It’s the ups and downs that get me.
Unfortunately the ups and downs are all part of life, with or without PMR….
So true!! And from what I read here, for those with PMR, a lot of those ups and downs come from Rhuemies!! Probably unfair as I'm sure there are many who do a fab job so we never hear about them.
Yep -correct on both counts….😉
I can do relate to how you feel. June 2021 I was feeling quite upbeat in a way… then kidney stones - and now just been diagnosed with Pseudoexfoliation glaucoma … it’s all the ups and downs and the frustrating unpredictability of it sll! Dorset Lady is so right though
So sorry to hear that. Just when we think we are getting somewhere something else comes along to kick us in the butt! Dorset lady is right, life is full of ups and downs and generally speaking I’m ok at dealing with the downs. Of course some of my problems are down to advancing age.
I wish you well very Tiggy 70 with the shoulder op. You’ll have loadsa love and support from your PMR family. ❤️ Take good care and get loadsa rest. xx
Thanks. Just having a bad day today 😘
Hi Tiggy70,
You're never completely by yourself whilst you're here on the forum... and you've done exactly the right thing by sharing how you're feeling.
There probably isn't one of us on here who won't have felt exactly how you're feeling at some point during their own PMR 'journey' and you can rest assured that we'll all be able to empathise with you on some level.
I've had PMR for 3½yrs now and it's definitely changed my life and the way I live it. ( See my bio) Some of those changes have led me to making decisions I'd never have previously chosen to make, and yet what I'm discovering, is that most of those changes have led to outcomes that have ultimately benefited me in one way or another, be it my physical well-being, my mental well-being or my stress and anxiety levels.
The best thing I did was accept that for now I was unwell.....and silly as it seems.....embrace that knowledge and focus on everything I could still do whilst not getting upset about the things I couldn't do.
For most of us, PMR will not be a permanent factor in our lives, but it will probably take several years before we start to see improvements.
There's much we can do to to help ourselves but it does mean a certain amount of hard work:-
- research your condition
- learn as much as you can about it
- learn about your medications
- eat appropriately (low carb)
- exercise but within your capability
- accept your new limitations
- have realistic expectations
- embrace the positives
- find joy in the little things
It's ok to have a 'down' day. In fact you need them in order to fully appreciate all the other better days.... and there will still be many better days.
A flare is frustrating but it will pass, and when your shoulder surgery is over you can look forward to more ease and comfort.
Tomorrow is a new day and will probably be a better day.
This awful condition can get us down at times but things do get better and they will for you too.
Sending you good wishes for a speedy recovery from your surgery. Let us know how you get on?
A good cry is a must sometimes…hope you get the flare under control asap,and good luck with the surgery 🌸
Thank you. I just want to get it over with🌺
Hi and please don’t worry about having a little cry, it is so good for you at times, I worry because I don’t cry about having PMR for over 5 years!I look back and although I sometimes hurt I realise that for me it was a wake up call. I had gone for about 30 years without visiting a doctor and was plodding along and putting on weight when suddenly bang! I couldn’t walk far at all or turn over in bed or climb the stairs.
On diagnosis I read about PMR on this fantastic site and decided I was going to lose weight as I didn’t want an even fatter face. A few months after I was diagnosed type 2 diabetic!
I am now over 3 stone lighter, eat healthier and walk so much more. I love my walks where I am able to have my best thoughts. I dream about waking up one morning without PMR, it will happen one day, in some ways PMR has helped me.
Sorry for babbling on but I just wanted to say that it is not a bad thing to let your emotions out. Things will and do improve.
Best wishes to you and keep us informed as to how you are
That's an amazing weight loss that you've achieved. Well done.....and I agree completely about the walking.One of my happy places too!
I love the walking and am amazed at how it brings my blood sugars down.Trouble is I find myself talking to myself a lot!
Hahaha! Well at least there's no one to contradict you or disagree with you......and you can always be right!😀
I too love walking, I take my little whippet out twice a day and talk to her as if she was another person at my side. We discuss our plans for the day and what we are going to have for tea, and I don’t care if anyone hears us.
Everybody does it now. Just put an earpiece in and you’ll blend in. 😃
Thankyou. I know I need to be more positive and I will - just not today☹️
I expect it is being on your own after having the youngsters there too, but there is nothing wrong with an off day now and again. Also I am sure you must have some worries about your upcoming surgery so all perfectly normal. Please keep us informed as to how things go
Hi Kendrew, Thanks, as always you have the right words to make us feel better. I have done quite a few of your suggestions. I think I’m now well clued up on PMR, the drugs and the tapering. I’ve been following a low carb diet since last Christmas and have lost 8lbs of the Pred. weight gain as a result. Exercise is a difficult one. I overdid my walking a couple of weeks ago on a short break and think I now have bursitis in both hips. I felt ok when I was doing it. I got Covid on 30 June exactly a week before my scheduled shoulder surgery. The surgeon won’t touch me for 8 weeks post Covid. I’m in a lot of pain at night with my shoulder and can only take paracetamol. I know I will be in even more pain after the surgery. I’m going to be in a sling for a month and told I have at least a 6 month recovery. Hard though that prospect is I just want to move forward. x
Absolutely. You've definitely some challenges ahead of you and PMR in the mix doesn't help, but you're clearly doing a lot to optimise your health and well done for that. Just try and stay positive and optimistic....there's frequently no gain without pain unfortunately, but I know you'll get through this because you really are doing well and better than you probably feel you are. A bit of a long road ahead for you but just deal with one day at a time. ❤️
Hi Tiggy are you not able to take Co -Codamol for the pain it can be far more effective than Paracetamol?
Unfortunately I can’t take anything containing opioids. They put my BP into my boots. I’ve been rubbing in ibuprofen gel but it’s really not touching the pain.
Okay, that does take out a number of options. I never found the gels did anything for my OA pains.
Hi Tiggy. Just to offer support for your upcoming shoulder surgery. In January I also had shoulder surgery due to severe pain. The surgeon decalcified my rotator cuff, shaved away some of the acromium to relieve pressure, excised the A/C joint and debrided another joint for OA, so it was quite extensive, yet I coped really well. I was using Synoleve painkillers (I'm in South Africa so you might not have them in UK) which are quite strong and helped. Paracetamol is also useful after the early weeks. I started shoulder exercises really early to get movement going, and was religious about doing the exs the physio gave me, even though some of them hurt. A week after the surgery I started the PMR pain in my hips and by the end of March I had pain in both shoulders and arms as well as hips. Then I got the diagnosis and started pred. So the PMR complicated my shoulder healing. I was also told 6 months for full healing. Now at 7 months I've got good arm and shoulder movement back although when I do yoga, I do not raise my arms above my head, to avoid further injury. I'm still a little achy in the shoulder but the surgeon says that is the result of PMR not the surgery. I'm still on 15mg pred but going to taper to 12.5mg this week. In SA we do not get 1mg tablets which is a real drawback to slow tapering but I'll somehow make do with cutting up the 5mg pills.Good luck with the surgery!
Synaleve is basically co-codamol plus an anxiolytic. It is available as Syndol in the UK.
Many thanks for your post. My upcoming surgery does sound very much like yours. You seem to have made a good recovery but you could certainly have done without the PMR diagnosis. I don’t think I will be prescribed the pain relief you mention as I am allergic to opioids. It’s just over two weeks to my op. now. I’m in a lot of pain at night so just want to get it over and done with. I hope your steroid reduction goes well. I struggled a bit with the 15mg to 12.5mg. Good luck 🌺🌺
Hi Dad2Cue, according to my consultant’s letter I’m having a right shoulder arthroscopy cuff repair and a/c joint excision. I’ve been told that the shoulder will never heal by itself as the supraspinatus tendon has a full thickness tear. I injured it in November 2021 and in March of this year an over zealous masseuse made it much worse. I know what you mean about finding your waist 🤣. I wish you well with your surgery .
A little cry sometimes puts things in perspective I find. Very best wishes for your surgery and recovery.
Hi, great support from everyone and thank goodness for this site!Wish you all the best for your surgery. Have a good cry whenever you feel you need to, it’s good to let the stress/upset out 🌼
Thank you. I’m feeling a bit better today 🌺
Yes it’s sad but hope pred is helping - good luck with shoulder #4yearsandcounting
Thank you so much. The support and comments from everyone have raised my spirits.🌺
It’s certainly a life-changer this PMR malarkey, Tiggy70. Don’t feel bad about having a cry!
We’re all different people and it’s good to release our feelings.
Good luck with your surgery!
Chin up girl....we all know how you're feeling x
Thanks x
Good luck on your surgery. I hope it helps.
Wishing you a successful surgery & a speedy recovery. Also quick control of the flare especially before surgery!
Happy PMR anniversary -sorry-not funny 😜good luck with your surgery xx
Thank you 🌸
Sending hugs from Ontario. I cried at the 2 year mark in a flare. Almost 4 years and almost done.
Mines three years this week. The first two years were the worst so hopefully you will improve this coming year. I’m down to 2mg now so figure (fingers crossed) only another seven months to go!!
Love your name. I could be Iamfedup2. So pleased to hear you are coming to the end of your PMR. Good luck on the final lap!🤞
Never assume that - that last 2mg can be very hard. Sorry - but don't set yourself up for a fall.
All the best Tiggy for the surgery, hope it goes well for you. My PMR is ongoing now for over 5 years and still on 20mg prednisilone daily. See the specialist today first time since December. Hoping he has some magic available to get me off these as they mess with my diabetes. Still going though as you say o wards and upwards. Blomps
Thanks for your good wishes Blomps. I too have diabetes and the steroids cause spikes. I hope your specialist appointment goes well today🤞
Thanks Tiggy, turns out more of the same alternating lower doses for a month then going onto the lower one the next month and so on. The consultant also thinks my bad head aches relate to old spiral surgery 40 years ago and is suggesting a little massage upon occurrence along with cocodomol.Worth a try anything to get away from the aggravated diabetic highs. Only on insulin now Hi and Nova Rapid with a little Glikazide twice daily.
Look after yourself
Blomps
Just picked up your post; I have just passed my 2 year anniversary, if that is the right word, and I too echo all the comments about this wonderful forum. I told one of our practice nurses about it the other day, and said that I did not know what I would have done without it. I have realised that there is nothing Odd about the time I am taking to reduce the pred, and also realise I am very fortunate to be down to 2 mg when so many others have been stuck for years on a higher dose. Just celebrated my 80th birthday, which I can't quite believe!!! (We spent 10 days camping with all 11 of our family, so I can't be too bad, though am now exhausted!)
I would be just thinking about it.. camping and with the family 😀... time for rest & recuperation methinks..
Camping yes (not a tent mind), all that family? Less keen ...
temporal arteritis for two years now
9 years PMR and counting!
Two year anniversary 
Two years after diagnosis
completion of two year course.
