I'm New here

[Janieb293]

Hi, my name is Jane and I have just been diagnosed with PMR. I am 55 years old and had never heard of this condition until last Tuesday! I am pretty much in shock and there is so many questions going around my head. I am trying to stay positive for my journey ahead, and looking forward to meeting other people on here who are going through their journey with PMR.

[SheffieldJane]

Welcome Janieb293,

You've landed in the right place for information, support and comfort. I can empathise with your shock but at least you now know why you've been feeling so rotten. Also, I remember thinking that the diagnosis could have been worse. Feel free to ask your questions ( there will be many) share your bad news and your good news too, or just have a moan. Lots of lovely knowledgeable people will pop up to help.

If I've learnt anything it is not to fight it and try to pretend it's not there, go with the flow, pace yourself and rest often.

[Janieb293 in reply to SheffieldJane]

Thank you so much for your warm welcome, it's great to have found somewhere to learn realistically about PMR, I will be around here quite often I think....so much honest info!

[Charlie1boy]

Hi,

Sorry to hear of your diagnosis. I think there are lots of us who had never heard of PMR before their diagnosis! Certainly that applied to me nearly two years ago.

You will gets loads of really good information and advice from this forum, but, as a first step, I recommend you get yourself a copy of Kate Gilbert's book " Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide".

Like many other PMR sufferers, I found it very helpful, and you can buy it via Amazon. There are also other publications, mainly from the northeast PMR group, which are equally helpful.

Hopefully, the prednisolone is working it's miracle with you without too many side effects. For the time being make sure you take it easy, and don't try to do too much, because, if you do, you will pay the penalty!!!

Good luck.

[Janieb293 in reply to Charlie1boy]

Thank you so much for your warm welcome and very much needed advice! I have downloaded the book so will get stuck into that today. There are so many questions and info to learn, it's all quite mind boggling!

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

As others have said there are a few good sources of info around, read what you can, and see if there is a self help group close to you - it really helps to others who have been/are going through the same as you. Details of groups can be found on the PMRGCAUK web page, and at a very small annual fee -£10 - you can become a member of the charity and get quarterly magazines full of info.

Sure you will have lots of questions once you get into things, please ask - no matter how trivial they may be - if you're worrying about them, then that's not doing you any good.

Some days you feel okay, others you'll feel like a wet rag! You need to learn to pace yourself, don't try and do everything on one day or complete every job in one go. Having a rest for 10mins works wonders, and it's good for you. And sometimes, say "No, I can't do it". You have to learn to put yourself first - not always easy if you're a wife, mum, sister, grandparent, friend! But necessary.

You will find PMR is a bit of a Cinderella illness, not very well known about, virtually invisible for others to see, and as such can be very isolating. That's where this forum is great - we've all been there - so please make use of us, whether to find out things, moan about others, let off steam, need a virtual hug, or have a good laugh! We do it all!

[Janieb293]

Thank you so much, your reply is very much appreciated...and needed. X

[isabella2015]

Jamie 293. I just want to say welcome welcome welcome!! We know what it is like and what a shock it can be, this forum is heave the sent and you are certainly in the right place. I'd have felt so alone and bewildered but here has been a great support.x

[PMRpro Ambassador]

Welcome from me too!

This is a link to a post on another PMRGCA forum here in the UK where we have collected together a load of useful sources of reliable information

patient.info/forums/discuss...

There is a lot of information and further links on the northeast and Scottish forums - the links to them are there.

Some is aimed at patients, some at doctors though some of the medical stuff is fairly easy to understand.

[Janieb293 in reply to PMRpro]

Thank you so much 😊 x

[suzy1959]

Welcome Janieb, I am 57 and got PMR at 52 years old. One of the things I am currently struggling with is work- it is stopping me from recovering?- I am beginning to think it is and those of us who are working really need to think about this. Are you working? I am thinking of suggesting to the charity PMRGCAUK that perhaps we workers ought to have a forum to perhaps collate what our experience is. Generally there is not a lot of research on PMR ad some have a sense that the age of onset might be going down or it might be getting more recognised in younger people. I was not properly diagnosed for 2 years as I kept being told I was "too young"- wrong!

Anyway, good luck on your journey and keep coming back here with any questions- it is a wonderful resource for us all.

[Janieb293 in reply to suzy1959]

Hi Suzy, thank you for the reply, it's great to meet you! I am working, I work on the deli counter at Tesco, I have found this difficult over the last few week as I am on my feet for 8 hours from 6am. There is a lot involved in my job, stock control, replenishing which is heavy work. I am thinking about asking to go on the checkouts when I go back as I really don't think I can physically cope with my current job. Either that or find another job.......dilemma indeed 🤔X

[Green_girl]

If you go onto PMRGCA.co.uk, you can also find out about groups who meet in different localities - and there are more and more cafe meet-ups around, which are more informal get-togethers. Really good opportunities to meet up with fellow sufferers.

Wishing you well and hope you find support - and as smooth a journey through PMR as is possible.

Anne

[Janieb293 in reply to Green_girl]

Thank you Anne xx

[lesley2015]

Hi Janie293

So sorry you have had this diagnosis but welcome to this fab forum. I was also 55 when diagnosed 18 months ago. In response to Suzy comments regarding work, i struggled on a high dose of steroid for a year, being full time at work, with 3 flares, so I am now on sick leave but have also given my notice in. I really could not cope (mine being stressful rather that physical, but each have their own problems), and am now slowly tapering so far, without problem.

I would say acceptance, learning to rest and be kind to yourself are some of the key points you will need to apply to yourself, oh and to say NO.

Read (you can google although there is a link on here somewhere) the 'spoon theory', it explains how sometimes people with a condition similar to ours just doesn't manage to do as much as a healthy person.

Best wishes to you.

[Janieb293 in reply to lesley2015]

Thanks Lesley that's a great help xx

[pmrdec112014]

Hi Janieb293

Very sad you have had to join our club if oyu know what I mean! I have had PMR for almost 2 years now and no sign of it going and was diagnosed at 51. As suzy1959 was saying about working with PMR i was due to go back to work today after the half term holiday but was feeling rubbish all last week so not able to go to day. I would say consider work carefully particularly check out work which is very repetative....our muscles do not like repetition with pmr and I find sitting for long periods doesnt help either ( this time of year in my line of work I am immunising in schools alot and my pmr really doesnt like it!) This forum is a god send particularly in the early months. Best wishes.

[Janieb293 in reply to pmrdec112014]

Thank you for your great advice, I'm really in a bit of a pickle with thinking about work at the moment. I'm off for another week so will have had 2 weeks off by the time I go back. Hopefully by then I will have got my head around the diagnosis and feel a bit better. Xx

[pmrdec112014 in reply to Janieb293]

Well I was very ill when I was diagnosed and ended up being off for 10 weeks and even then went back on phased return so be careful going back too soon.When you do go back people will expect the same of you as before and because the steroids make you look well they are even more deceived!

[Janieb293 in reply to pmrdec112014]

ThAnk you for your advice. I'm going back to the docs in the morning as I have a constant headache a d have pain in my leg. I'm going to ask him to increase my sick note to 2 weeks, then I'll take it from there. X

[pmrdec112014 in reply to Janieb293]

Good idea you just have to take one day at a time at the moment

[PMRpro Ambassador in reply to Janieb293]

Do you have Occupational Health at work? Or a union?

I couldn't work on the deli even now - and I'm really well managed and very used to what I can and can't do.

[Janieb293 in reply to PMRpro]

I do have a union, do you think ,I should speak to them? I never tbought about that. I am hoping that I don't have any problems moving department, but you never know x

[PMRpro Ambassador in reply to Janieb293]

Definitely - that's what they are there for though how useful they will be I don't know!

They should be able to tell you what help Tesco have in place for staff who are off ill even if they don't do much else. I only ever worked in public service where Occy Health are part of the wallpaper so can't really help.

And I'd definitely take full advantage of what sick leave you are entitled to - although I know there are awfully strict rules about that these days, Getting more and more like the USA - which isn't a good thing when it comes to employment law.

[Rose54 in reply to Janieb293]

Hi

I am very much the same as pmrdec112014 PMR diagnosed in Aug 2016 I had 4 months off work more or less total rest .

Occupational Health involved and did a phased return to work over 6 weeks.

I have a job that involves visiting people in their own home so get to have a sit down and rest although it is mentally challenging due to issues customers have .

I have been back to work 1 year but my company are brilliant .

I don't have a family to take care of as all grown up so able to rest in the evenings .

Not ideal working but have no alternative at present .I do agree with others we would most likely be better not working ,

And for me I feel that reductions are more difficult when working .

Its not the end of the world and looking back I am pleased with how far I have come in the last year .

Rose

[Janieb293]

I have been back to the docs this morning as I'm feeling pretty rough having picked up nasty cold. I also have pain in my leg, my calf muscle which took it upon itself to 'ping' for no reason about 4 weeks ago. When I started the Pred. last week the pain in it went and the only residue pain I had was in my neck, which is still present but much improved as the day goes on. The doc has only signed me off work for one week, pending my blood results from tests on Thursday. He has also told me to up my steroid from 15mg to 20mg and see how I go. I find this quite scary and I'm confused. Should I take the extra 5mg now, or wait until tomorrow. I never even mentioned my headaches as I was in fog! Can I take paracetamol for my headaches? Thank you for your patience and advice in advance. I was only diagnosed last week so don't have much of a clue x

[PMRpro Ambassador in reply to Janieb293]

It doesn't make much difference really - you could take 5mg now and see if you feel any better in the morning as a result. But otherwise - just wait for the morning.

Did he say why he felt you needed more than 15mg if you say most of your pain is gone?

[Janieb293 in reply to PMRpro]

No he didn't say, he was just talking about it being long term and me thinking about what I was going to do about work. It wasn't the same doc as I saw last week so that didn't help! Unfortunatly you have to ring the surgery at 8am the day you want an appointment so you just have to have which ever doctor is there that day, otherwise it can be a 3 week + wait.

[PMRpro Ambassador in reply to Janieb293]

Oh right - probably someone who has read a different book...

The most recent recommendations for managing PMR say to start anywhere between 12.5mg and 25mg but at the lowest dose that does the job, which is basically encouraging a higher starting dose if needed. I doubt a GP has seen them though!

If you are happy on the 15mg and feel it has achieved a good result don't feel you MUST go up - it's only 5mg more to have to reduce at some point. On the other hand - you may need the 20mg if you have to go back to work next week - because that didn't change when you saw this doctor did it?

[Janieb293 in reply to PMRpro]

No it didn't change, I will just have to see how I go after the blood tests. Thank you for you're advice, it is very much appreciated 😊