Never a days illness, now this!!

Hi everyone hope all off u are free from pain, although i dought that, i cant wait until jim goes to the specialist he is not handling this to well been off his work and mopeing about all day ,i have encouraged him to post his feelings to you, so u mightget a posting from a[ pattie ] thats his middle name so look out for him guys, he needs your support, thanks.. MARGARETANN GOD BLESS

Hallo MargaretAnn and sorry to hear that your and Jim's problems don't change much as yet. Fingers crossed for a really knowledgeable and sympathetic specialist.

It really would be splendid if Jim would post in his own right. At the very least it wouls be something to do and, as we are always saying, it's a great comfort to share our problems. Yes, I know men don't admit to needing comfort! :lol:

Best wishes to you all BettyE

Thanks bettyE

YES I AM TRYING TO ENCOURAGE JIM TO POST IN HIS OWN RIGHT SO HE WILL WHEN HE GETS HIS COURAGE,THANK YOU LOOK OUT FOR HIM, WILL SPEAK TO YOU LATER MARGARETANN

Hi im pattie margaretann hubby,, i have to go for my appt tomorrow to rheumatology, im worried sick and margaretann told me to go on line to speak to you .she said you would make me feel better.So i ask myself how would you manage to even see me with all those people posting there storys mines would only get a glance but Margaretann says she has a lot of faith in u guys. So here goes im worried sick about tomorrow when i see the specialisti dont know what to say or do, all i know is im in a lot of pain some pain that i cant discribe and im frezzing most of the time ive got sore hipand leg right side pain in my bed at night i just dont know where to start,will he think im speaking rubbish if i tell him something thats not to do with this illness. i mean ive got niggly pains all over my bodt that i didnt have before,how can all that be connected to this its an awful lot .i told u and Margaretann i would be useless on this web page and here i am .if im not been able to make myself clear how am i going to manage explaining all this to the specialist, i will go to pieces, and even if you were to say some words of comfort, it will be to latei wont get them in time,Although my appt isnt until 3.50pm i could still manage to read my computer up til then. of coarse this is my own fault i should have posted you earlier but just couldnt get the courage, im olso a lousy speller just like my wife...goodbye for now hope to catch you soon i really hope thankyou PATTIE

Hi Pattie!

Welcome - I'm so glad you've decided to come and talk to us even if we are a load of old women :wink: (OK guys - that was meant in the nicest possible way! :lol: ).

I do hope you've read at least some of what's on here as it will help tomorrow.

You'll be just fine and dandy tomorrow - if nothing else, you will be able show the consultant just how much pain and discomfort you are in. It MIGHT be something different to PMR - and that is his/her job to make the diagnosis and identify it. You don't have the training and a medical degree, it's not your job to provide the answers. It IS your job to answer the questions as well as you can - the truth, now, no being the tough guy :wink: If it hurts - tell them! If it stops you doing something, tell them. Just be yourself and tell it as it is.

And the same applies about any treatment. Don't go there expecting anything to be a miracle cure. But if any treatment they give you makes the pain/discomfort/stiffness less bad - tell them about the improvement. If it makes anything worse - tell 'em! If you take medicines and they make you feel bad or anything is worse - tell them. How ever many bits of paper they have from the University, they still aren't mindreaders. You have to tell them what is happening to your body.

You probably didn't do it at the time when the GP tried you on steroids, but keeping a diary is a really good way of seeing what the difference is. Say you can't lift your arms above your shoulders today but you can after a few days treatment, write it down, say how much better it is. Do it at the time, don't put it off, you'll forget. And take it to the doctor. If you ask Margaretann I'm sure she made a note of how things changed when you were on the prednisolone from the GP - she certainly noticed some things! She'll probably be able to remember from what she wrote on this forum. Take a note of that with you tomorrow - and don't be put off showing it to the doctor.

Take Margaretann with you - you can if you want to - but she mustn't answer for you unless you forget something really important. But having somebody with you to listen to what the doctors say (and write it down) is a good idea - you'll forget, miss things, not understand things, and go home and say \"what was that again...\" when there's no-one to ask. At some point you'll probably get to see a nurse specialist - that's not a case of cheap-skating, not using the doctor. It's because a nurse specialist is good at helping patients understand things that doctors haven't explained well (or at all). They have special training in how to explain things without using medical jargon and they have more time.

Wear something comfortable that is easy to take off and put on again. You're not going to the kirk! You will have to undress at least once though, more if there are X-rays and things. Wear sleeves that roll up easily for if they take blood samples. As long as you are clean and tidy nobody cares what you are wearing - no need for a collar and tie. Actually - they won't judge you for not being clean or tidy, but I imagine you and Margaret care about your appearance and it's much nicer for everyone involved if you're clean and smell nice (don't forget to wash your feet!)!!!!

There are some doctors who don't like patients with bits of paper - but if you explain that you are just concerned you might forget something that's important most don't mind at all. I took a \"past history\" of what had happend with me to my consultant and he didn't get stroppy. The letter from the GP doesn't say much nowadays and the consultant has to get a history to be able to make a diagnosis so if you have it written down it will make everything more complete.

Whatever it is, there is something that is making you ill so that working is well nigh impossible and it needs to be given a name and treated in some way. There's lot wrong with the UK in general - but it is still a reasonably

Hello Pattie

I'm so glad you've taken the plunge and written to us at last. You will only get real help here where there is no-one who doesn't sympathise and know exactly what you are going through as far as pain is concerned. I especially understand as I suffered for a whole year, with 3 months of that year in bed, not knowing what was wrong with me and without treatment that worked before eventually being diagnosed with severe Polymyalgia and Temporal Arteritis.

Firstly, sit down, take a deep breath and relax. Then write down the date you first started feeling pain together with the areas of the body that hurt, followed by the visit to the Dr and any treatment such as the steroids. If they eased your pain, write this down. If when the steroids were stopped your pains returned then write that down also.

Give these notes to the consultant tomorrow. When you arrive, again take a deep breath and relax. Then tell the consultant exactly where you feel pain now. Leave the rest up to him, he is working for you and that's his job.

Don't feel that the consultant will think you're \"talking rubbish\" - you need to tell him everything you feel even if it may not be connected to PMR so that he get's the whole picture and what tests to do to help in his diagnosis.

Now you've managed to explain everything to us and we all understand so, of course, the consultant who is expertly trained will well be able to understand.

Hope this helps but do remember, RELAX - after tomorrow you will be on the road to having relief from all that pain.

MrsO

Hi Pattie,

Glad to read your post. I completely agree with what EileenH and Mrs.O have written. They're both experts around here and have a lot of experience.

No one here knows for sure if you have PMR or something else. Just answer the Rheumy's questions as accurately as you can. He's the specialist and knows what questions to ask and what the answers mean.

I remember a month – or maybe longer than that – your wife wrote that you felt a lot better when you were on Prednisone (or Prednisolone), but then you were taken off of them because the GP thought you didn't have PMR. I guess since the pain wasn't COMPLETELY gone, he [i:c9c64b8848](or she)[/i:c9c64b8848] figured it couldn't be PMR. Not sure if it [b:c9c64b8848][i:c9c64b8848]is[/i:c9c64b8848][/b:c9c64b8848] PMR, but in my own experience, all of my pain wasn't gone in two weeks of taking 20mg of Pred. I was 85 to 90% better – but not 100% better. It takes some time, and everyone is different.

When I finally went in to see my Rheumy (March), I walked like a 95 year old shuffling my feet. I couldn't raise my arms more than a foot let alone over my head. My hips, butt, and thigh muscles were aching. I wobbled like an old man when I tried getting up out of the chair. For weeks prior to that, I couldn't roll over in bed without severe pain in my shoulders.

Most of the sufferers of PMR are female (at least twice as many I hear), but there are a few of us men that can also get PMR. Good luck with your appointment Pattie. We hope and pray it goes well for you. Keep us advised on what the Doc says.

Cheers.

Hello Pattie

Glad you have now joined us All the others have given you the advice about relaxing as you wont get as much out of the appointment if you dont

Do take notes if you feel you need to My Doctor who is fantastic always gives me her pen to write my blood results down and if she suggests reductions on my steroids for a month and then perhaps something else I write that down to

The Consultant Rheumatologist sees people with all sorts of different ilnesses and will probably ask you lots of questions to eliminate other illnesses and also about any past medical history The important thing is just to say where all the pain is and what time of day its worse and what difference the steroids made to you when you took them Thats why sometimes taking notes with you helps a lot

Also dont worry if some of your symptoms seem different to ours as we all have differnt ones anyway !! I have had this illness twice and this time it is different to the first time and if it isnt PMR it may well be something he will recognise and all you want is treatment and to feel better

So keep calm and just relax and answer all the questions he asks He is the expert ( or should be ) !!

Best wishes and let us know how you get on And if its steroids dont worry I would rather have them than be in pain

Mrs G

Hi Pattie,

I was only diagnosed in April this year and have found this site wonderful as a sounding board and for picking up tips on how to deal with this illness.

I did not respond to the steroids immediately, and have had to go up and down a bit, but they definately make life livable \"if that makes sense\"!! Good luck to you tomorrow and hope it all goes well for you.....the important thing is not to understate the problems you are having....those of us in the same boat know how uttewrly miserable PMR can make you feel, and there is no point in not being totally honest with the doctor as you will be the one to continue suffering :cry: The best of luck, Pauline, Dublin.

Hallo Pattie and very pleased to meet you at last.

First, no-one cares about your spelling.

Second, You have had lots of good advice on here from people whose interest is to do anything they can to help someone who is suffering as we have.

[quote:34712495cd] ive got niggly pains all over my body that i didnt have before,how can all that be connected to this its an awful lot .i told u and Margaretann i would be useless on this web page and here i am .if im not been able to make myself clear how [/quote:34712495cd]

You make yourself very clear and, if you will take time to read as many of the posts on this site as you can, you will find that, no matter what pain or niggle, someone else will have experienced it and will understand

Remember that Polymyalgia means many pains and there is not much to say where they will be. Not only that, but they move around. When I had this first it was my arms that hurt so badly I had to hold up one arm so that I could plug the kettle into the electric socket. Now my arms are just fine but walking is often very hard.

You have been waiting for several weeks for this appointment so take your time to answer all the questions and don't try to be too brave. This pain is no joke whether you are a five foot woman or a big bloke used to tackling the heavy jobs.

Doctors are like everyone else. They have good days and days where they got out of the wrong side of the bed. Some are sympathetic people, some are impatient but remember it is their job to help you and very very few indeed are so unprofessional as to not make this their chief concern so don't be shy about letting the doctor know just how miserable this is making you.

Many of us on here have found it hard to get used to the idea that sometimes WE are the ones who need help. We have been used to being \"in charge\" of our lives and it is scary when we find that we now need help.

I do hope you will have time to read the responses to your post before you go to the hospital tomorrow. We will all be thinking of you and margaretann and hoping you will be coming back to us with hopeful news. Good luck to you both BettyE

Pattie

By finally coming to this site you have taken the first step to taking control of what is happening to you.

Tomorrow is another step and take MargaretAnn with you. She is your best friend.

When you have finished with the appointment, you may or may not have a diagnosis, or perhaps a temporary diagnosis.

As I have said to Margaret Ann, you are in the best place in Scotland for help and advice. The PMR & GCA Support Scotland is based in Dundee and they have an office, a website and telephone numbers. They meet once a month. The people who run this Charity know more about PMR than I ever will. Their Patron is a leading International Medical expert on PMR.

They are listed on this website under Support Groups and get many calls from patients who have been recommended to contact them by both their GPs and Rheumatologists.

There is light at the end of the tunnel and also there is a dedicated email mens group as men sometimes find it easier talking (well emailing) other men as they can have different problems to women - so what's new about that - nothing but it helps to hear from other men in your position.

There is also a DVD available for newly diagnosed people. Tayside will tell you about it.

Good Luck and Well done.

Hi everone its Pattie here,., well this when the fun begins ive now been offically told ive got polymyalgia rheumatica the specialist says hes 99% sure that i have this condition just one more blood result to come back to check for athrititis but he doesnt seem to think that i have athritis and he has allready given word for my gp to start me off on 15mig of steriods,i took joan in with me and she was amazing when i couldnt answer his questions for what ever the reason she was right there for me with an answer, even the docter thanked her for her help, im so glad i took her in with me, he was not happy that my gp took me off my steriods when i still had a little pain with them ,he should realiased that i needed the dose to increase from 5ml not to be taken of them compleatly, he said that 5mg was not a high enough dose to put my pain compleatly away. but mabey he will stop putting neck and shoulder pain on my sickness certificate, but i hope to get back to work as soon as possible, i dont want to go back to be truthful but i cannot afford not to. by the way in my previous posting i called you all guys he he but thats what we say when we are addressing friends we say thank you guys meaning you are a great bunch thank again because you will get fed up with me for i need to ask so many questions but for now i will let you go thanks for listening PATTIE

Hallo Pattie,

I am SO please to hear from you. Was getting worried and sent margaretann ( who seems to be Joan? ) a private message saying where are you. Didn't like to put it on the public forum in case you wanted to be let alone.

It does sound as though you are on the way to getting the treatment you have needed all this time.

Everyone will be delighted if we have helped you and hope you will keep coming back. You won't just be asking questions, you'll be able to put in your two pennyworth which will add to the pool of knowledge about our illness.

Must go now but will keep in touch if you will let us. BettyE

PS Well done margaretann ( Joan? ).

Pattie

Here are the details for:

PMR-GCA Scotland

Dundee Parish Church (St Mary's) Group

formerly

Tayside PMR & GCA Support

Unit 11

Prospect III

Gemini Crescent

DUNDEE DD2 1SW

[b:600953e549]Tel: 01382 562 974[/b:600953e549]

Scottish Charity Number: SC037780

Website: www.pmr-gca.org.uk

New website: www.pmrandgca.org.uk

Patron: Professor Bhaskar Dasgupta of Southend Hospital

PMR-GCA Scotland acknowledges funding from Awards for All

Jean Miller who runs the group has had both PMR and GCA, what they don't know about PMR and GCA I could not begin to fathom.

This is the last time I will post this information.

Hi pattie and margaretann (whatever name you want to be known as! :lol: )

Great to hear from you and so pleased you have a sensible and sympathetic rheumy up there in Dundee! I know N/W very well! Now you have a diagnosis you'll be able to get something sorted out with work which is something positive to balance out the fact that you have PMR, which none of us would have wished on anybody but there it is.

Keep us informed how things go on and your experiences with PMR as a bloke. We all respond to both it and steroids differently - and men even more so. And I'm sure Jean and her group will be pleased to welcome the two of you. I assume the meetings are held in St Mary's so it's easy enough to get to.

Maybe the best thing to come out of this is another GP will be about to get an education! I hope the consultant gives him a crash course in PMR and its treatment.

all the best

EileenH