Never a days illness, now this!!

MrsO - no not yet, the ski man is still in summer mode: bicycle hire! The ski season starts the last weekend in November, this was just a hiccup, we're back to sun and a bit of cloud, but decidedly autumny in the mornings!

I mix the sweet, some fat, favourite flavour (vanilla or blueberry) yuk stuff with fat-free plain - nearly the best of both worlds then :lol:

xx Eileen

Hi everyone hows you all doing, I tell you EileenH id love to be where you are ive always wanted to visit Italy it sounds and looks great, but sadly ive never been able to afford it, mabey some day, what made you go and live there?i bet its the best thing youve ever done cause it sounds bliss, And Lizzie Ellen you allways have good weather where you are,not like Scotland we allways get the worse off the weather i would like to be brave and just get up and go and live in Italy or some warm place it would surely do my athritis good. Jim has been on his steriods lfor 4 days now not a great improvement this time, hes not in pain when he walks , or getting out off bed so there is some improvement there but he still cant move his arms and washing himself in the shower is an ordeal do you get higher doses than 15mg cause if u do i think jim should be on higher. Although you have to give it time i would think hes only been on them 4 days oh sorry 5 days jim tells me he is to go back to his gp when he has been on them 2 weeks,so hears hoping, he dosnt feel ready to go back to work, but he is getting a lot off presure from them, not even a phone call from them to see how he is and him never been off his work but when he went up with his insurance line he just got grunts and moans asking when he is comming back to work not even how are you feeling.hes so worried about it but dr has signedhim off for another 4 weeks, i tell him to forget about them and think about himself getting better. So thats me finished all my prattling on as i usualy do. and say goodbye and thanks for listening god bless you all thanks MARGARETANN

Hi MargaretAnn,

Jim being on Pred for 4 days may not be enough time for marked improvement, but glad to hear he's doing [i:a08c8e66fd]some [/i:a08c8e66fd]better. Everyone is different. Some start to feel a bit better the same day, others it takes days. For me, I remember showering in the morning was really tough. Couldn't get my arms up high enough to wash my hair. It was at least one week before I was able to even start to raise my left arm up — then two weeks to be able to raise my right arm. I did feel improvement in my legs and hip area quicker though. But as I said (and read here before) everyone is different. I remember having to give up wearing T-shirts for quite awhile as I couldn't get my arms up high enough to put them on.

Tell Jim to hang in there. No hurry in getting back to work. If the Dr. gave him at least 4 weeks before he had to worry about work, I'd would sure take it.

Good luck to you and Jim. Plz keep us updated. Our thoughts and prayers are with you both.

Hallo again MargaretAnn and Jim

I think one of the most infuriating aspects of our illness is the complete absence of any predictability. However much we try to support each other we are, in the end, on our own. What has happened to other patients is no reliable indication of what we can expect. Even how we have been personally on one day or occasion might not give us much idea of what to expect next. It's a rollercoaster, no doubt. I sometimes fear the run of good days, however welcome, more than the grotty ones. You can almost believe that you are on the up and up and then,bang, back down to earth.

What I am trying to say is, don't be too disheartened at the absence of dramatic improvement. When I first had PMR in 1999 I did have a magical relief from all pain in hours but this time it was much slower, certainly more than a week before I felt anything like comfortable and, even then, there were things that caused propblems. My arms, which had been excruciatingly painful first time, this time were 100% ok which made a doctor( not my usual ) wonder if it really was PMR But I do remember that, when it was my arms that hurt they were so bad that I had to support one arm with the opposite hand so that I could plug the kettle in. This time, it's all in my legs.Someone on here said perhaps it will all disappear out through my feet!!. I can't wait.

There is a thread on here titled Lack of Empathy. If Jim hasn't read it already, he should.

Sadly, the world is not populated exclusively by lovely people. It IS very hurtful when those whom we thought were friends and colleagues are so preoccupied with how our illness inconveniences them that they forget to behave like decent human beings. I have no answer for that except to say, as you have MargaretAnn, Jim must only think of getting well. This is not a just world. People can be selfish and inconsiderate and today's employment atmosphere of dog eat dog, devil take the hindmost and weakest to the wall is not only harmful to the obvious sufferers but corrupts those who fear for their own position and are often subject themselves to pressure from above. First we had Mrs. Thatcher and No such thing as Society and now we have Mr. Cameron's Big Society. Enough of that.

We may be only virtual friends on here but we are better than nothing and we do care. BettyE

Dear Jim and MargaretAnn....it took me a while (maybe 5-6 days)and some extra pain killers before I started to feel better, so hang on in there and don't give up hope As others have said,a lot of the problem we sufferers have is that we don't look physically ill and therefore people don't understand the difficulties we face on a day to day basis. I am in the minority of people on steroids who has lost weight and am constantly monitored by friends as they think I am throwing up my food!! I was out for a meal last week with friends and one girl was defending me, telling the others in our group that I had finished my meal and had not disappeared to the loo afterwards :roll: It is sooo difficult for others to understand the limitations that this illness places on us and the general tiredness that comes with it. The main thing I have learnt,not only from personal experience, but also from reading other peoples stories, is that you MUST pace yourself....if you do too much on one day it will leave you with zero energy the next, and feeling very depressed. Your main priority now must be to get yourself well and not give yourself the added stress of worrying about work. You are entitled to take time off for a recognized illness and to those who don't believe you have a severe and debilitating condition....just tell them to come on this site and read some of our stories....they might (JUST) start to have some idea of what you are going through My very best wishes to you both, Pauline, Dublin.

Hello Margaretann

It's good to hear from you and great news to hear that Jim has had some improvement.

Now don't be in a rush for a miracle (even though we all dream of having one)!! And don't be in a rush to get the GP to increase the dose. It's very early days on the Pred and it takes a while for the steroids to reduce all the inflammation in the body. The fact that Jim is already completely free of pain when walking and when getting out of bed is great news. The arms will gradually improve too but please don't expect Jim to be completely pain-free - very few people attain that goal - Jim could be one of those lucky few but for the rest of us it's a case of getting our heads around accepting that we're in it for the long haul and taking comfort from the fact that once on the steroids we are at least able to lead a much more normal life than pre-steroids when some could not even get out of bed let alone raise our arms away from our bodies.

One important tip for Jim is to keep moving about, nothing too energetic, but perhaps a daily walk where he tries swinging those arms a bit to lessen the stiffness.

Another tip is to make sure that Jim's diet includes anti-inflammatory foods such as oily fish, beetroot, garlic and avoid all processed foods and too much sugar and especially avoid too many carbohydrates (ie bread, potatoes, pasta) as the carbs will encourage the weight gain whilst on steroids.

Bestest wishes to you both!

MrsO

Hi Margaretann!

We came to live in Italy because nearly 30 years ago my husband went to work in Germany and we went too! We went for one year originally and stayed 10, one daughter was born there and both went through school. We came back to Dundee as the next career move for him - no-one else wanted to!! :roll: We had enjoyed our time there so much that we always said we wanted to live in mainland Europe again, in a German-speaking area so as not to have any language problems! So when he decided he'd had enough of the NHS and being \"reorganised\" every 6 months we decided to both work freelance and come here to the flat we bought 6 years ago from plan.

We're not rich in money terms although we have done well with houses - never big and fancy but practical and bought at the right time and sold at the right time. So whilst all our other family our age have fancy 4 or 5 bed or barn conversion homes, we have a 2 up 2 down terrace in the north of England and a 3 room flat here! When we moved to England from Dundee (another career move) we got a small house as we couldn't sell the house in Miegle at the time and also got a flat in Dundee for the girls to finish school in Scotland. When we were able to get rid of both a few years later it was \"pay off the mortgage? buy in Italy?\". No contest!!! :lol:

This area is German speaking - right up in the mountains - and we've known it for more than 25 years since we lived in Germany and came here skiing then. Lake Garda is southern Germany's seaside! That's 2 hours from here. It's beautiful and we love it and the people! And we are accepted as locals not incomers. What more could you want?

All the best to you both - it may take a little longer this time for Jim than last time but he is improving, that's a start. And the attitude at work? That's normal - he's not been ill before so won't have met it. They hope that by making him feel guilty he'll come back sooner. They wouldn't do it if it were cancer - but anything else is fair game. Ignore them!!

EileenH

Dublin How I wish I could remembver that!

Our wheeled strimmer which I have mentioned somewhere was on the blink for a week. Today our kind neighbour got it going and I could not resist. Lovely sunny afternoon so off I went. Started at the third pull. Wonderful! Now we can get to our compost heap wthout welllies and there is a decided absence of long grass. BUT my hips are giving me gip.

The upside is that I feel a great sense of achievement and optimism.

Man does not live by bread alone. We must consider our ailing bodies but don't forget the spirit. They are connected, I'm sure.

Here's hoping I can get out of bed tomorrow.

Good night and sweet dreams all. BettyE

Hi all!

And the most important bit that I left out from my post about why here???

Sixteen years ago my husband had cancer - it was an interesting year to put it mildly! He had chemo, an operation and radiotherapy. When the tumour was found - one that is normally testicular cancer - it was the size of a rugby ball and had just pushed his lungs to one side to make room for itself. He had a cough - nothing else. His prognosis the day he started chemo was dire. The GP had treated him for a chest infection and asthma - no chest X-ray so had wasted nearly 3 weeks. But he has survived - and we know that we usually only have one chance but we got another. You can't take your money with you, so we're enjoying it! :lol:

luv to all

Eileen

[quote:b7060d9339]Here's hoping I can get out of bed tomorrow.

[/quote:b7060d9339]

Not only could I get out of bed but most of the stiffness in the hips had gone after a really good sleep. Did I say that this illness is unpredictable? What I did yesterday was definitely the overdoing it class. Listen to ourselves, yes, but not just our bodies or, at least, not always.

Eileen. May your \"second chance\"go on for many more years in the place you love.

Best wishes to all, BettyE

Hi everyone [EileenH] youve had a second chance at life so yes why not live it to the fool,ive tried telling jim this that you cant take your money with you, we do have some savings and he is worrying about spending it.I think we deserve a holiday after all this, in fact im pushing for a family holiday my daughter and soninlaw and there 2 kids, and my son and his fiancee, and our 2 selfs it would cost over £5,000 but i would love it and we can afford it but its our savings, Jim is having a terrible time with pain hes got another week on 15mg of steriods and then the docter god he is so stubborn hes not letting me in with him this time, because hes worried that i let slip that he is very depressed, cant get him to think positive[ mabey its because i want to spend some of our savings] :lol: but seriously i dont know what to do with him does the depression ever go away?i am really at my wits end, is our life ever going to get back to normal.We have never been rich but we have been comfortable, and it would be nice to get that back,[thats why i was asking about italy, ive always wanted to go there, might need some advice on where is the best location to go to ,either all the family or just the two off us i dont know yet. but i would love it. As you can see it is the middle of the night so i better try and get some sleep hope you are all well God Bless MARGARETANN

Hello again Margaretann

Sorry to hear Jim isnt feeling any better MY Dr has put me on 20mg of steroids to start both times I have had this and the 2nd time around she said not to worry if I had to take 30mg She is of the opinion not to be frightened of steroids if they take the pain away buit as I have said before she checks me very carefully for any side effects

The depression is a bit more difficult to deal with as obviously I dont know Jim If he has always been an upbeat sort of chap ( as my husband is ) it is probably the shock of this illness changeing what he can do and what he thinks his future will be and hopefully when his pain improves so will he

As for the holiday it probably best to wait until Jim feels better as there isnt a lot of point in going somewhere new if you cant walk around and enjoy it Just look at the brochures and dream for now If just you and Jim are going Lake Garda in Italy is beautiful and especially May June time or September but Im not sure it would be an ideal choice with children depending on ages and what they like of course My husband and I have always made the most of every opportunity and if one thing stops for us we start something else We are 62 now but in our 30s a dear friend died of cancer and made us realise to enjoy everything we can while we can our role models are people who make the most of everything

I am not fit enough to ride my horses now ( mine is too old at 33 anyway !!!!) but this last weekend we took our Caravan to the Great Dorset Steam Fair and this weekend we are off to Rhodes for a week I chose a place not too hilly and with a swimming pool so if I am tired I dont have to trail to the beach and we will just see how I feel when I am there as to how much we will see

Jim may be sent back to the Specialist if he isnt responding to the steroids to see if there is anything else it could be Is any of his pain better ??? because if it just say in one shoulder now that could be a frozen shoulder as well as PMR or a severe muscle strain

Hope things improve for you

Best wishes

Mrs G

Hi all!

MrsG - Lake Garda is good for children if you go down the bottom end, the big fat round part! When our girls were growing up in southern Germany Lake Garda was the nearest \"seaside\"! From Lazise down to Peschiera there are several theme parks - all served by buses - and the lakeside camping sites are all totally geared up for children with clubs and games and plenty of other entertainment. The caravans and bungalows (usually air-conditioned) are lovely and scattered amongst the olive trees on some and there's plenty of shade. Don't try to go in August, however, it's hot day and night and it's FULL of very noisy Italian families. And when I say full - I mean full! But Italy is always a good bet with kids of most ages - they really do cater for them, even in hotels. But for me, a caravan or bungalow, self-catering breakfast and lunch and eating out at night is heaven!

But that's for another year now - October is the end of the season.

greetings from Seoul this week! Where it is raining!

EileenH

Hallo MargaretAnn and Jim

[quote:9b4a9caf23]does the depression ever go away?[/quote:9b4a9caf23]

Can only speak for myself, of course, but, yes,it does and comes back and goes away and I've never been sure whether it is caused by the pain, the steroids or the fury that THIS should happen to ME!!!

I think maybe as time goes on I have become a bit more accepting but still have grey days. Remember Jim has only had this for a few weeks. Yes, it probably does seem a lifetime. His work place does not seem to be overflowing with caring people, he is concerned about his future ability to do the job he has done for a long time.

He has never been ill before. Maybe he has a low pain threshold, no disgrace in that. We differ considerably one from another in this respect and the pain of PMR is not for wimps as everyone here will tell you.

Perhaps he is worrying because he still has so much discomfort and feels that he has been given the wrong diagnosis. Again, there are variable responses to steroids both between individuals and on different occasions and times personally.

Has he contacted anyone in the PMR group locally? I know that you have been given the details. It doesn't suit everyone to pour out our troubles and worries, I know but he really might feel better and more hopeful if he could bring himself to share experiences with other patients and really understand that he is not alone.

I don't know whether any of that helps but I wanted to try. BettyE

Hi MargaretAnn, Jim and everyone.

We went to Lake Garda several times with our family when they were young teenagers and they all loved it. The campsites around the various parts of the lake are very safe and there is always something to do.We found it very cheap to eat out there compared to home and the Italians love children, so they are welcomed everywhere :D .One thing to be aware of...Italian is the primary language spoken, followed by German, and we found English was used very rarely, but that said,we never had any problems and even managed to learn a bit of Italian ourselves :lol: .As others have said, it may be wise to wait until Jim is feeling more comfortable before planning a trip....I know I would have loved to get away earlier in my illness, but the very idea of trying to get from the terminal to the departure gate was enough to make me see sense :eureka: . Thankfully, I am reasonably pain free and not too stiff now and have reduced to 16mgs a day of steroids and only occasionally need pain killers...so to celebrate my progress my darling hubby has booked a holiday for the two of us to Antigua (did I mention he spoils me rotten?) We are also of the opinion that life is for living, and although we like to keep a nest egg for emergencies, we feel have worked long and hard enough to earn these trips.....as they say here \"There are no pockets in a shroud\" best wishes to everyone and hope you are all having a pain free weekend. Pauline, Dublin.