Polymyalgia

What's all this about a North light for artists?

Eileen, we have a mirror, it faces North. I never look in it without a shudder. Fat? no. Ugly and furious? Oh, yes, indeed.Try to find one that faces South if you can.

You are always so scientific and informative it's part shock and part reassurance that you have these dire days, too. Hope it's very temporary. BettyE

Hello to every one and Eileen you do make me laugh :lol: Well sorry to hear your troubles Posh Spice but what a lovely support group we have here. I have been in floods of tears tonight as my puppy lab knocked me over in garden so am really fed up. Got to go for blood test tomorrow to see whats going on as 5mgs is not controlling this pain now. Found it hard at work on Monday, I work with high needs dementia and mental health patients in a nursing home, not the best job to have with PMR eh!

Anyway hang on in there Posh and all good wishes to all.

Hugs.

My dire day is probably a culmination of a few \"too close to the husband\" days :roll: :lol: Being together in a car is NOT a good idea!

But honestly - the knowing how and why doesn't necessarily make PMR any easier :cry: - in fact, the knowledge of the lack of common on the part of my peers at uni makes me even more angry! If I can read and learn at my age (not that old) so could they - doesn't require much brain does it? Of course wanting to helps. I have a list of things I want answers to - can I get them? Not on your life!

Hence my suggestion somewhere that docs should have to experience PMR and being on steroids. What idiot could tell a patient that \"once she was on steroids she'd feel fine\"????? In what world? And their refusal to actually treat a chronic patient as a human being - 10min = one problem, make another appt for each of the others. And if you get stroppy they threaten to chuck out or accuse you of being aggressive - that happened to me with a consultant when SHE asked ME if I had my EEG test results!!! And then said it wasn't up to her if I got to start driving again - only with her say-so could I go to DVLA and say they could start the process for me to be able to drive again. My flabber was so gasted I raised my voice when I explained the system - she was quick enough to tell me I shouldn't drive, so she should have been aware of the rest of it in my book! The nurse approached me with raised hands telling me I was being aggressive :roll: - the worst thing she could have done as it gives me flash-backs to me being attacked - I managed not to flip out entirely. Haven't seen the consultant since :D Best that way - she was a colleague of himself's - don't get the impression he was too taken by her attempts either :D as he was present! And I know the system - god help anyone else!!!!!!! :lol:

Eileen

EileenH

Snap.

Today has been ghastly - if I come across one more idiot who cannot join dots up before I go to bed - I swear I will chuck something handy at them.

Good job its 10pm and nobody is likely to ring the bell.

We will make a difference someday - hang on in there, I am - just.

One rather large drink is called for and then bed. Tonorrow is another day (and I hate that trite expression).

Thanks out there for replies. No I am not working (69years) ad luckily not doing too many cakes either!

My CRP should be 0-15 so 45 is rather high, but not as high as it was in the beginning 65! High means pain... My Rheumy and I have a good relationship and he sees me every 2/3 months and gives the doc control in-between. Unfortunately a lot of docs, inc mine, have little knowledge of PMR. I have never been so down and frustrated.....just back from a cruise to Russia where it all started going down hill - should be on top of the world!!!! Anyway going to make appt tomorrow to see if I can get sorted.

Poshie :roll:

Hi Posh

My CRP needs to be under 10 for me to feel Ok and my wonderful DR looks at that rather than my ESR as an indication as to am Im doing 5 is where Im best Hope you manage to get something sorted soon

Eileen the reason Im not keen to see a Rheumy is the one I saw ( privately ) was miserable so and so but I got what I needed steroids ! One of our friends sees him on NHS he has terrible arthritis and thinks this Guy is something unprintable !! He told him so one day and the Consultant apologised by phone later !!!! So human after all !! If you saw him you think Zombie !! Our friend had a previous Consultant there and stopped going to the hosp for a long time ( until his wife persuaded him back ) as every time he went he was asked wheres this test wheres that test \" You didnt say to have them !!\" and once even had a different patients notes out for him !!

Hope you are feeling better today Eileen I must be in a good mood as Im of to Majorca Sat !!

Yes Mrs K I have read all the stats thank you but I can see as so many people are treated by Drs and not Rheumys to get figures is really difficult Hope you too feel better today

Mrs G

:D Fellow sufferers said Eleen was good -thanks for ADT advice. I just doubled dose alt days - now I know how to do it......

Like you 25lbs or more has gone in the last few year - I think it is steroids and lack of exercise. On good days I do try and get some extercise gardening etc even though I do sometime pay for it. As to mirrors - ban them. I am jusr back from a cruise to the Baltic Cities and the ships photographer took loads of pictures of a bloated face and fat belly...I did not buy them!!!!! Got appt with Reumy on 11th July as he is on holiday...so will have to manage til then. Unusually I have a stiff neck these last days - something I had in the beginning. Most of pain is hips, buttocks and thighs which make diffuclt walking.

ESR should be 5-15 Mine 25 so not too high CRP 0-5 Mine 45 this is units per 100ml I beleive. Higher mine is m ore pain.

Oh well another weekend to look forward to and sun is going to shine. Can I get pout and do some gardening - albeit on my knees!!! we wll see

Cheers to everyone Poshie

Hi Posh yes my weight has soared also and I am a bit lumpy !! As I used to do a lot of exercise even if any extra weight when on it was firm not flabby

I did quite a bit of gardening last week and I move my position a lot I use what was an old exercise mat and sit on it sometimes with feet in flower bed !! sometimes on knees then I get up have a stroll around perhaps do some clipping back then back on the ground I must look strange !! and at the end I look like a child who has been playing in the mud !! But with doing it this way and changeing hands when I am useing a trowel I dont get too stiff and now the ground is a bit softer I did a better clear up than usual Having had PMR for a long time now I do find gentle exercise helps but nothing that puts a strain on the muscles

Have a good weekend

Mrs G

Poshie - who says 5-15 for the ESR? Anything up to 30-35 is absolutely normal (double your age, add 10 and divide the answer by 2 as a guide) and it will even rise if you have a cold or flu! Unless they are not using ESR but another very similar test.

I eventually had to give up any gardening (not that I did a lot, I'd managed to make the garden very low maintenance before PMR appeared) but even now, anything involving leaning forward goes straight to my sacro-iliac joints :cry: and causes cramp across my lower back. Now I sit on the balcony and look at OP's :lol: Cheaper too - don't need to buy plants :wink:

Eileen

Eileen,

With all due respect, I think you made a mistake in what is considered a normal ESR level. Don't find anywhere where it says, \"double your age\" part. But, have read several places where you add 10 to your age (if female) then divide by 2. For males, it's just age divided by 2.

I'd give a link but we all know the post wouldn't show up for a long time. Just Google \"normal ESR\".

Hope this helps.

Rick - plead guilty m'lud!!!! When I think how often I've written the correct equation :roll: :oops: - I can only plead flare/steroid brain! Cos one or the other is going on! Thank you very much for correcting it - I'll read what I've written at least 4 times for the next few weeks! How embarassing :oops: What an idiot :lol:

Eileen

Yes, Rick, that's what My GP told me but I hadn't picked up the discrepancy.

We all think Eileen is God so she gets away with it!!! A long time since O level maths. ( It wasn't even O level when I took it. General School Certificate in those days and my credit was \" a big surprise\" to my maths teacher. I remember her expression but she said it with a BIG smile.

OK Betty - no need to make me feel worse :wink: :roll: - what a twerp!

No problem Eileen. I read it a few times and thought nothing of it. Then said, wait... is that right?

The Pred really messes us up in all sorts of ways.

Rickf and EileenH

I wrote ages ago on this website about both ESR and CRP.

When I queried ESR and CRP indicators and why some people where told - so and so was all right and others were told, no that's not right. I pushed and here is the answer I was given, mind this was a couple of years ago and I have not bothered to investigate further.

On the calculations you have given, my norm ESR would be 42.

Neither my GP or Rhematologst would accept this as normal. Here in my NHS Trust area, the norm is lower, they will settle for 27-29 and niggle when its higher. The CRP (which is really the more important for me) is no higher than 8.

I have had quite a battle to get them to accept that at CRP 13 for the past year, we take that as normal for me (taking into consideration height, age and weight) and take a drop in the pred. (It got to 13 when I was on 4mg and its stuck there).

I have successfully dropped to 3/2 alternate days with no symptoms emerging so far and intend to take the drop to 2mg when I feel ready (bit of stress lately).

Each NHS Trust area has its own 'norm' and that it why they are treat as 'guidelines' and not set in stone.

But please remember, I am not a medic at all, knew nothing 4 years ago and still feel I know nothing and becoming more confused than ever.

I am really getting cynical about what I read on the net about PMR and GCA, as says one thing, and another something different.

Rheumatologists don't even agree amongst themselves

I am not saying they don't understand that PMR and GCA exists, it is the steroids usage they all squabble about, with the rates, dosage, droppage etc.

I know they worry about the side effects and want to get us off them as soon as possible to protect us really.But sometimes I just wish a GP or Rheumy (preferably a woman) had PMR and had to use long-term steroids and see how painful it can be or alternatively give us all forms to fill in and see what is reality.

OK that's my grump for the day. Roll on a lottery win then some decent research.