Never a days illness, now this!!

Hello Pattie

Glad to hear your visit to the Consultant went well It is always diffifcult to remember everything especially when it is all new to you but if you are going to be on 15mg you should soon notice a difference in how you feel

It is not nice to have any illness at all but you could have worse things than PMR Its probably my age ( Im 62) but I seem to know far too many people with incurable illnesses who suffer a lot more than I do

I would do as Mrs K suggests and join your local PMR group You are lucky to have one unfortunately there isnt one in my area as its great to be able to have a chat with someone who understands

Ask as many questions as you like as there is normallly someone on here who will know the answer

Insist your GP now puts PMR on your sick certificate but if you feel better you might feel a lot happier about going to work as with a lot of pain you very soon get run down and depressed and dont want to do anything

Best wishes

Mrs G

Hi Pattie,

Good to hear back from you. I've been coming here everyday looking for a followup post. Thanks for that.

Well, you now have a diagnosis of PMR – and with 15mg of Pred – you should start feeling better pretty soon. I would guess that within two days [i:fbe90ca66d](maybe three)[/i:fbe90ca66d], you'll feel about 75% better. Here's hoping anyway.

BTW, we do the same thing here in the USA using the 'guys' term when referring to a mixed group of people. Don't remember when that started, but no one here takes offense... well not me anyway being a guy. :lol:

Please keep us posted on you're doing.

Hi Pattie

What a relief to hear from you again - not thrilled exactly to hear that you have eventually been diagnosed with PMR but definitely pleased to know that you are now facing much better days ahead.

Yes, you will have lots of questions and don't think for one moment that anyone on here will get fed up with you - we've all been there........just ask away.

Pattie, don't be in a rush to get back to work but give yourself time to at least adjust to the steroids first.

Hopefully you and Margaretann/Joan or whoever :lol: can now relax a bit and give yourselves a special treat of some sort.

Very best wishes.

MrsO (one of the \"guys\"! :lol: )

Hi everone thanks for all your concerns we both feel honoured to have you as our friends and as Jim says he will have loads of questions to ask in the comming weeks, He didnt mean to let it slip my real name he he! but i will continue to use my user name but for you that know me if your sending private messages my real name is fine.incidentally [wrong spelling ] how do you send a personal message, could someone talk me through it,up until now i didnt know you could send private messages, anyway thanks again god bless you all MARGARETANN

Hi Margaretann

It's great that Pattie has finally been diagnosed and I do hope he's starting to feel relief from most of his pain - you must feel as though a weight has been lifted off your shoulders and may it be onwards and upwards for both of you now.

To send a private message to anyone just click on the little box containing the letters \"pm\" which appear underneath our messages, and then it's a similar pattern to posting on the forum.

Very best wishes to you both.

MrsO

I've just noticed that my post of Aug 4th has been tagged\"you cannot rate your own experience\" (!!) Well, I didn't I can asure you. How crass would that be.

I did notice soon after posting that it had been rated and was a bit surprised as it was a very ordinary, short post to offer encouragement. Nothing speacial as you can see.

I thank my lucky stars that I learned to use the internet but these events make one very wary.

I try to be careful and follow the rules but, obviously that is not always enough.

Any ideas anyone? BettyE

Hi Betty

I didn't see the tag so is it possible it only came up on your own post? Very odd - perhaps one of the moderators will come in and give you an answer.......or even our very own IT specialist, Rick! :wink:

MrsO

Thanks Mrs.O I should have expressed myself more clearly.

I am used to seeing the \" you cannot rate etc. It appears as a matter of course when we post and that's fine and what we would expect. What slightly bothered me was that, having been rated, the rating stars disappeared and the original \"cannot\" re-appeared. I would not have noticed if it was not that I had been surprised it was rated in the first place.

Never mind; there are better things to be worrying about e.g the article in today's Guardian by an ME sufferer judged fit to work as she can raise one arm ONCE. I'm gald I,m as old as I am and feel for those genuinely sick people labelled scroungers.

Hi guys [i:630917aae1](& gals?)[/i:630917aae1] :lol:

I'm hardly an 'IT specialist', but I did see a post at the top of this page by the moderator saying something like, \"This is the last time I'm going to post this...\" Then, \"this message will self destruct maybe\" (meaning she'd probably delete it after awhile). Not sure that's what you're referring to Betty.

As far as the *rating* part goes, I noticed that at each panel of replies, there is a small box (lower right corner) where you can rate that post – or experience. Maybe Betty clicked on one of those posts and it happened to be her own post. Not sure.

Hope Pattie is staring to feel better. :wink:

Thanks, Rick I think I shalll just relax and forget this!

The little box doesn't appear in one's own ratings so it wasn't that.

It's a very good thing to be reminded that systems are not infallible

Happy Bank Holiday, all. Typical weather here;blowing hard and raining whenever you put your head outside the door. It'll be lovely when the children are back at school. BettyE :roll:

Hi Pattie,

Glad to see you back...I think everyone on this forum was waiting to see how you got on . I know that this must be a difficult time for you, as I was very depressed when I was diagnosed and realised there was no quick fix to this illness...and I am in the lucky position that I don't even have to try and hold down a job!!!! The problem most of us with this find (read posts re lack of empathy) is that we don't look ill, and other people just do not understand how difficult some day to day tasks can be . I can only put as much water as I need for my one cup of coffee into the kettle in the morning or else I cannot lift it....until my steroids and painkillers kick in :roll: . speaking of which....are any of the rest of you still needing to supplement with painkillers or is it just me??? I had got down to 15mgs but had to go back up to 17 as pain & stiffness returned & my rheumy thinks it is going to be a slowly slowly approach to reduction from now on. Keep in touch...I am only relatively new to this but have found the site fantastic as a sounding board and seeing how others cope. very best wishes from one celt to another, Pauline, Dublin.

Hi Margaretann here im a little bit worried about jim [pattie] he is so depressed cant get through to him. Hes worried about his job but he dosnt feel ready to go back yet, he goes to the docter monday so hopefully then once he gets his steriods from his gp he should feel a bitty better. He says hes sorry he started all this that he should have suffered it in silence like he has done for quiet some time.but it come to a head and needed treatment i tell him he couldnt have suffered that pain any longer. i caught him tonight with his head in his hands, never seen him like this before. hes just not used to being sick ,he has worked with his job for 20yrs and has only had about 7 days sick in all these years i will keep him happy as i can. we could do with a holiday but im told he cant go on holiday if he is off sick, has anyone heard of that? anyway got to go thanks for listening God Bless all of you MARGARETANN

Hallo Margretann and Jim

I won't be the only one to say she knows EXACTLY how you feel. The depression is grim for both sufferers and those near to us. Jim, you are lucky, as I am to live with someone who sympathises.

No-one can say just how you will respond to the steroids when you get them. (Why on earth could they not have been prescribed at the hospital; you've already waited long enough. I don't think this is medical prof. ethics and courtesies as I was offered steroids to take home when I needed extra for a penicillin/alendronic acid reaction.

Please don't think of suffering in silence and pretending that nothing is wrong. I've tried doing without when I blamed steroids for all and any of my problems but I won't be doing that again. This illness does seem to have highs ( when you think, right, I'm getting better ) and lows ( when you think I'm never going to be well again. ) and after a while I found that I could both see the light at the end of the tunnel on the bad days and also, and just as important, not become too confident on the good days which would lead to disappointment when they didn't last.

Only one more day before you get the medicine you need. Again, don't get TOO excited if the pain lessens dramatically, nor too down if it takes a few days for the improvement to be significant. If your diagnosis is correct the you really will feel better soon.

I recovered completely from PMR after three years on steroids and was right back to normal for five years. Unusually ( I believe ) it came back two and a half years ago and that has been hard and I know all about depression, believe me. I was like you, Jim, never a days illness, full of energy, always ready for the new day and I thought where was my guardian angel when this hit me? But it IS getting better and so will you but it wont be quick unless you are unusually fortunate.

I would have thought that sick people need a holiday at least as much as anyone else. If there are rules about this you have to wonder what sort of country we are living in but I won't go there on this forum. Citizen's Advice woul be able to tell. Give them a call and put your mind at rest.

Actually, from what I have read by other posters, all the making of arrangements and the change of surroundings and routine my not be what you need at the moment. I don't know as I never go on holiday. I like home.

I and many other have found this forum a great help. Do keep coming back.

Of to read the Sunday papers and be grateful I am not in Pakistan or down a mine in Chilli.

Best wishes to all. BettyE

Hi margaretann,

So sorry to hear how Pattie is reacting - it's really not surprising. He's just been told he has a chronic illness for which there is no cure, just treatment that will make his life more comfortable. It will be little use telling him it could be worse, PMR doesn't kill you after all, but for him life as he has always known it has come to an end and he will need time to come to terms with it and adjust. I suspect he was depressed anyway and this will have been the crowning glory on how he was feeling.

I'm surprised the consultant didn't hand him a prescription there and then - mine did. I do hope the GP has access to the consultant's decision as normally you have to wait for the letter to get back from the hospital.

It also sounds as if he is being a typical bloke - he's obviously forgotten that the reason he went to the doctor in the first place was because the \"suffering in silence\" bit was outgrown and he couldn't manage his work. He wouldn't have gone otherwise would he? It's amazing what short memories some people have! And he certainly wouldn't have managed his work as he's been recently or he would have been signed off and gone back. And even now he doesn't feel ready - he says so himself. He's just being daft. :roll:

As for not being able to go on holiday when you are off sick - I don't think that is true. It all depends. It's one thing to put in a line for something and then go off but if you are off longterm with something you often need a holiday to get well enough to go back. Certainly 16 years ago when my husband was ill with cancer he worked parttime (going in between treatments) because he could only have 5 months off before losing pay and it was going to take far longer than that. Towards the end of the treatment he took holiday for his radiotherapy :roll: as he'd run out of sick entitlement. By the time the radiotherapy was finished he'd worked long enough to be due a total of 6 months sick leave but had the most awful cough (from the radiotherapy) - so he was signed off for a while until the cough calmed down a bit. We then went off for a week to northern Italy so I and our daughters could have the ski holiday we'd missed at the Christmas time when he had surgery! There was no problem with that - his boss knew and he went with his blessing. As long as the sick line covers the period you are off and you are genuinely ill there shouldn't be a problem - and he's been off for some time, the consultant has diagnosed a recognised disease which is covered by disability legislation (don't forget that, will you) and so there shouldn't be too much argument.

Margaretann - the best thing you can do is look at MrsK's post from a few days ago and get the details and pick up the phone and ring Jean Miller. NOW! We can write all we like on this forum and offer sympathy, but it's all virtual. You are the only person who can actually do anything real where you are. Jean has one of the most knowledgable groups in the country and can tell you all this, who to go to, what to do to get help. If she didn't want to help she wouldn't be running the group and offering her assistance to suffers and family alike.

You have that info in your hand - use it. Jim probably won't want to do it as he is feeling but you need the help too, so get on with it!

all the best,

EileenH

Hi Margaretann and Jim

Betty and Eileen have both given you excellent advice here so all I've got to add is if you both feel that a holiday would do you good then have one - you are not shirking, the sick note shows a diagnosed illness. I'm a bit like Betty in that I love being at home and enjoying days out but everyone is different so go with how you both feel. You must now try and relax and stop worrying now Margaretann - once you, Jim, gets through this early phase of the illness and the treatment, you are going to feel so much better and on top of things - just try and stay positive. It isn't easy, I know but you are not alone in this....you're both blessed to have each other, so come on and fight it now. Very best wishes to you both. :hug:

MrsO