Frustrated !!

Bones, joints and muscles
1

Hi all,

I am starting this under a new thread as I am fed up with this Pmr and how it is affecting my life :? :evil: :cry: .

Last week, as some of you may recall, I had a flare up that required me going back to 15mgs from 11mgs....and all seemed to be going fine for about two days, but I have had a steady decline since then :x

Today my legs, arms and shoulders are all aching and stiff and I have had zero energy. It took me an eternity to get washed and dressed this morning :oops: and although not as bad as I was before diagnosis, it is the worst that I have been since this journey began.

Sorry for being such a \"moaning minnie\", but no-one else understands the frustration and pain that this illness brings and I am so fed up wit not being able to do what I want, when I want :cry:

hope the rest of you are faring better.

love, Pauline.

2

Oh Pauline.

Sorry you are feeling so fed up. I do feel for you though, as all the good people who write on this forum will. PMR has to be the most frustrating illness ever, and thats without all the pain!

Just like you Pauline, I had a flare up a few weeks ago, and I wrote about it on another post. And just like you I had to go back on 15mg after doing (what I thought) so well and managing to get down to 10mg.

3 weeks on I am still on 15mg, but I am thinking that very slowly the pain in my leg is easing. So perseverance and patience has so be the name of the game.

And we must try to have faith in time and not get too stressed and frustrated.

PMR, it seems, strives on stress! I don't care if I have to stay on 15mgs, or even higher for months so long as I can keep the pain away. If it has to be like that then so be it. You may have to up your dose again too.

So please, don't lose heart. We all get low from time to time with this illness, as I did a week or so ago.

Just like you, I let rip and let it all out to the ladies (and gents) on this great forum. They will listen and will help you through.

It will get better..

gilly.

3

Hi there Pauline I know where you are coming from and you are so right when you say \"no-one else understands\" My friend next door said to me today that another friend of ours asked her \"was I really ill? Jeepers did she think I was putting it on.

Sorry to hear things are not so good at present for you.

4

Oh Pauline.

Sorry you are feeling so fed up. I do feel for you though, as all the good people who write on this forum will. PMR has to be the most frustrating illness ever, and thats without all the pain!

Just like you Pauline, I had a flare up a few weeks ago, and I wrote about it on another post. And just like you I had to go back on 15mg after doing (what I thought) so well and managing to get down to 10mg.

3 weeks on I am still on 15mg, but I am thinking that very slowly the pain in my leg is easing. So perseverance and patience has so be the name of the game.

And we must try to have faith in time and not get too stressed and frustrated.

PMR, it seems, strives on stress! I don't care if I have to stay on 15mgs, or even higher for months so long as I can keep the pain away. If it has to be like that then so be it. You may have to up your dose again too.

So please, don't lose heart. We all get low from time to time with this illness, as I did a week or so ago.

Just like you, I let rip and let it all out to the ladies (and gents) on this great forum. They will listen and will help you through.

It will get better..

Hi gilly I have the PMR a few months and the Doctor took me down from 15 to 10 in one go which i now realize this was to much to quick. I have just had a blood test done so will be seeing the doctor on thursday for the result she better not say she wants me to go down some more lol

I hope your pain eases for you

5

Hello Pauline

So sorry to hear how bad you are feeling I was trying to look back at when I had my flare up last January and I had to stay on 15mg for 5 weeks before I could start to reduce again I saw my Dr after a month and my bloods had improved but I made a note then that I still felt tired so stayed on 15mg for a further week I still felt stiff and achey when I went up to 15mg but not real pain but did feel really washed out and listless for quite a while I would say my energy didnt really start to return before March but I have now 12 months later got to 3.5mg

I cant remember if your bloods do show how you are feeling or not ( mine do ) If yours do and you dont feel any better in a week or 2 ( or less if you feel worse ) I would ask for a further blood test to make sure this dose is doing the trick

We do understand the way you are feeling I was very low as I felt I had got back to square one almost ( I started on 20mg 15 months before that blip )

I really hope you feel better soon

Best wishes

Mrs G

6

Hello Pauline

I'm so sorry to hear that you are feeling so down today as you have come quite a long way since starting on 40mgs. Perhaps you can just give yourself some extra TLC for a few more days at 15mg and if there is still no improvement then have those blood tests repeated to see whether the inflammation has increased again.

I do so sympathise with how this disease can interfere with your life and I remember well having to adapt my life completely in order to cope with the ups and downs. I agree that it is so frustrating and when you have a flare it isn't only the pain that gets to you but also the feeling of losing control. I found that the only way I could cope was to get my head around the fact that I had to give in to the illness on the bad days and count my blessings on the good ones but certainly never overdo things on those good ones or I would get \"pay-back\".

It isn't a year yet since you were first diagnosed, Pauline, and it is not uncommon to have flares in the first 12 to 18 months. So hang in there - at the moment life may not be as you want it but it WILL improve. Meanwhile, we are all here for you. :hug:

Love,

MrsO

7

Pauline

Just let it all out. I had been through an operation to enable me to walk again, it took a year out of my life but it worked. Plans that had been on hold were resurrected, boats booked, visits arranged and many catch-ups - the diary full for a year. Three weeks later - GCA. Three months later and I am howling in the back garden yelling at the Moon, talking to my Mother (long gone) and ending up in floods of tears.

I realised, I could not beat this one - either I changed or it 'won'.

I changed and whilst I look back with fondness on what I did, what I planned to do, I smile. Not a great big grin, just a small smile.

I learned to 'go with the flow', to say 'no', to agree with those people who said 'you look well'. To shut up the shop when I just could not be bothered. It took time, but I coped better and after the first flare up, I handled the second one with greater confidence.

PMR is not life threatening, it just destroys the quality of life you have enjoyed until PMR came along. If you are lucky and are a classic case you will get that quality of life back. Today I was talking to a lady who has just done that and she comes along to our support group to help others. If you are not lucky, then you will find a different quality of life.

If you think back, non of us ever do 'what we want - when we want'.

You adjust 'what you actually want' to fit in with loved ones and the people around you and you also agree to perhaps defer that 'when we want' also to fit in with those around you.

You have not really ever been an 'I' person who does not consider other people, you cannot be, you have family, friends and loved ones. If you were an 'I' person you would not have them. People shy away from 'I's'

Now, if you have a back garden and it is not raining - go howl at the moon and let all that frustration out of you lassie. Its a no no with PMR - get rid.

Keep on keeping on.

8

mrs k,

What encouraging worlds, as usual!

You are the only mrs k in the UK :lol: .

God bless you madam.

MsK

9

Hello Pauline. So terrible sorry to hear you are in such pain again. I had not read the postings this morning, as I was quite tired having been up most of the night ( Posted under Weight Reduction etc...) Now feel ashamed of moaning in there. I have now read the replies from the \"Girls\" and realised how much pain is going around in here ! And how strong and capable you all are ! I did not know that PMR is so treacherous, so unforgiving and nasty ! I never had feelings of hate, but if it is like I feel for this \"THING\" Then I do hated it with all my heart. What am I complaining about ? I am down to 7mg...and my doctor making me feel guilty for being on such a high dose ? When I read here that quite a few of you are on 10 or 15s ? I feel quite lost at this point. I am having a bit of a cry for all of us. I feel as if I know you. You have become my friends and I am so grateful to you all. Dear Pauline, get better soon. Love. Granny Moss :rose:

10

Oh Pauline - I don't really have any words to add to the others. PMR can make all sorts of feelings surface from euphoria to :cry: :cry:

And you are younger than some of us which must make it worse too, as I guess you have been doing a lot more than us to start with!

Can you find any little treats that might make the day a tad better ? I used to go for a hotwater bottle, a pain au chocolat (to hell with the weight loss) and a drop of the hard stuff. Not too much of that of course or the \"cheering up\" turns into feeling worse.

Stick in there, Pauline, it WILL get better,

With all our love, Green granny.

11

Hi Pauline,

The others have said it all, so I'm just sending you a hug :hug:.

Love from Lizzie xxx

12

Ladies,

Thank you all so much for your lovely messages of support smile .

I took myself to bed early last night after a lovely cocktail of Tramadol and Pinot Grigio....probably not what my rheumy would advise....but the wine was lovely and the tramadol took the edge off the pain :wink:

I am a little bettter today and certainly my mood has improved :oops: , so will just persevere for now and hope that things continue on the right track.

Thanks everyone....you are all brilliant :angel: :love:

Love, Pauline

13

Pauline - I'm just catching up after having visitors for a week and I'm sorry I didn't see this earlier. Big hugs from me too.

I'd started to get a bit concerned. After about 7 months of treatment I had got down to 13.5mg/2 days last spring after a minor wobble during the winter and was great at that but couldn't get further down. Then in the summer I gave in to the niggles that seemed to be getting more and more and edged back up to 17.5mg/2 days. Now I can't get down from that and began to think it might be the alternate day bit. I tried going back to daily and found I'd have needed more than half the 2 day dose to feel as good. I'd been reading all the tales of decreasing doses every month or so and began to wonder if I was really doing something wrong. Strange as it may seem, it is a comfort to hear that others have a struggle too. I'm now so grateful I haven't had to go up as far as 15mg/day to control what is clearly a good-going flare.

Have you done anything unusual - or have you got an underlying infection of some sort? I had a urinary tract infection that wasn't recognised and treated for a few months and I'm sure that was where the trouble started.

I do hope you feel much better soon - something plus PG is a favourite of my daughter for dealing with pain (not tramadol though, makes her feel most strange!) and even if it wouldn't be approved of, if it works, in moderation is has to be good!

EileenH

14

Hi Pauline, and all,

just got round to catching up with recent posts.

So sorry to hear that things have been getting a bit on top of you.

I don't think this time of year helps either. I can empathize with you completely. My husband was in bed over Christmas and the New Year with a bug that he is still trying to get over, and what with one thing and another I felt as though a large black cloud hung over me and a lot of the time was spent crying my eyes out. My mood seemed to make the pain a lot worse, just to add to things.

I have never suffered from 'the blues' before, but I think that the pain and restricted lifestyle took it's toll. The snow that seemed to go on forever here meant getting out was very difficult, along with some bad news from my hometown and the fact that I felt I had 'missed out' on Christmas really got to me! Silly I know, but that's how I was feeling at the time.

Once I had told a good sympathetic friend how I was feeling, it was like a weight lifted.

I was determined however that I would do my best not to up my steroid dose unless I really had to. After the journey to get down to 2.5 mg, I really didn't want to up it, the weight I am trying to get rid of doesn't help my moods either !!

Anyway, sorry to go on so, I really do hope that things have improved for you, as they have for me. It's surprising what a couple of days with a little bit of sunshine can do !! :cool:

Hope to be sounding a bit more cheerful next time I chip in.

Best wishes to all

DD aka Julia

15

Hi everyone,

Am feeling a good lot better again now today, so as a thank you to all of you for your support i have written a little poem....i hope you like it smile

Most of us have never met,

Our home towns are diverse,

But we all share a common goal....

to shed this \"POLY\" curse.

I tried drowning mine with alcohol,

A plan quite doomed to fail.

Perhaps the wine was too genteel...

I should have tried strong ale!

I tried smothering it with chocolate,

A foolish scheme, I know.

I ate every brand available,

And still it did not go?

So now I give it what it wants,

And feed it lots of Pred,

Enjoy when I have good days,

Spend the bad ones in my bed.

I'll accept the silver linings,

As life could be much worse,

I would not know such lovely people,

Without my \"POLY\" curse :D

Have a lovely day everyone,

Love, Pauline

16

Hello Pauline and Poet Laureate!

So glad to hear you are feeling so much better and it certainly comes through in your lovely poem (I'm all for smothering my PMR with chocolate :choc: ) - it deserves a place of honour, and I'm sure mrs K will want to post it somewhere on her Northeast website? May you have more better days ahead very soon. :D

Love,

MrsO

17

Absolutely great Pauline :D

Just shows how much a sense of humour (and talent) help.

Thanks so much, Green granny

18

Dear Pauline, What a LOVELY poem ! Bless you, you have cheered me up on this day, one of the bad ones..love Granny Moss PS Glad you are feeling better. xxx

19

Hi Pauline,

So many thanks for that lovely poem, I think it sums up how we all feel about our friends on here, and how we cope with PMR (most of the time!)

It certainly gave me a laugh this morning, which I can always do with. :lol:

Sun is trying to shine here this morning, after listening to plenty of rain during the night.

Love to all,

:cuddle:

Julia

20

You are not wrong MrsO

Pauline, we will give you credit if I can use it in our publicity stuff.

Email me on this site and let me know if its OK.

Such skill with words - wonderful.