Tearful Day today

It's just occurred to me - the ESR figure is said to be (age+10) divided by 2. Now, I assume that the \"normal\" figures are calculated by taking results for a large population and arranging them according to age group for any that vary with age. NOW: if a large proportion of the older age groups (over 50ish) have undiagnosed PMR, then the results will be high - not because that is what happens to older people anyway but because they are not \"healthy\", they have a chronic condition. However - once you approach the 40 level, it is borderline abnormal by any standards.

Why does it happen in the holidays? Because you suddenly have time to think about not feeling as well as you'd like and noticec more plus the immune system which has been running on overdrive (whether you take steroids or not) to get to the holidays realises it can also have a break. And goes to town and abandons you!

Topical ibuprofen gel might be helpful - cooling and anti-inflammatory.

Eileen

Eileen,

I was put on AA & Omerprazole? not sure of spelling!

But after reading the negative things about it, stopped them.

Have had a bone scan & no sign of osteoporosis.

When the rhuemy referred me to the neurologist , he said he will do an M.R.I. scan of my head, this was done & no problems.

My faith in docs have nosedived over all this, but the neurologist I still see , as he is monitoring my progress on steroids & I have faith in him.

Cheers Amycakes

Amycakes - so like a lot of other people, you were put onto AA with no evidence of you needing it or that you had adequate calcium and vit D levels for it to be able to have any effect. What on earth do they teach rheumatologists before they are let loose on us? :roll: Apparently they don't even know how to read - I'm not impressed that they hand out a drug without even reading the data sheet that is included for the patients to read about when you shouldn't take it or the side-effects! That they haven't read the entire entry in the pharmacopea is one thing - the edited for the idiots data sheet is another! :shock: :wink:

Hi Eileen et al

Just to update you all. Went to private physio and she is pretty sure it's acute bursitis poss with some nerve involvement. She did ultra-sound, acupuncture and told me to go to doc and get stronger pain relief.

Didn't sleep at all last night due to pain despite overdosing on paracetamol and taking ibuprofen.

I feel a bit better now it's being sorted.

Thanks to you all as usual - its such a relief to talk to you on here.

Beev

Hi MrsK,

Yes I have seen an optician , no problems at the mo, thank goodness, will see him again when my check up is due.

Thank you for the info, much appreciated.

Its a pity the medical people dont read all these messages, they may understand then what we go through.

Never mind, we will get there!

Cheers Amycakes.

p.s.the brandy idea someone mentioned sounds good to me!

Hello Amycakes

Yes, as Mrs K has said, I do have both PMR and GCA like you but, as for being a \"better guide\", we could have no better than MrsK herself without whom this forum would have been sadly lacking in the knowledge and support that she provided together with her band of PMR Fighters in those early days, and is still providing. So just taking the opportunity to say a big thank you here and cheers to her. :ta: :bubbly: By the way, she's also the brandy pusher! :wink: :lol:

One experience of mine in going from 40mgs to 1mg at present has been that if ever there was a flare it was in the PMR only, not in the GCA and I never reached a completely pain-free situation until on the very low dose. So I guess the dose required for keeping my PMR pain under control was also working to keep the GCA at bay.

I also found that in the early days it was always my CRP blood test that was higher than the ESR and this may possibly be due to having GCA which bears out what MrsK has said about the CRP being a very good marker for GCA.

It's great to hear that you have a neurologist who is taking special care of you - stick to him like glue! :wink:

You're doing really well and I hope it continues to go smoothly for you, Amycakes.

MrsO

Hello beev

Pleased to know someone knows whats wrong with you and it sounds as if you had a thorough check up

Hopefully if you have seperate pain relief it wont effect the PMR and Im sure once that is sorted you will feel better generally and your PMR will improve

Best wishes

Mrs G

Hope you are feeling better today, Amycakes. It does get better, I've found, even when I feel it won't!

Nefret

I was pointed in the direction of some interesting articles on Pain in the March 11th edition of Time magazine. Usual Google will find them and you are allowed to print them off which, as they are quite long, is more comfortable.

Thank you to all for your kind messages.

Yes I felt better , but shaky this morn.

Taking it easy today, have to attend the warfarin clinic at 11.am so resting till then.

My daughter in Tring coming to stay over Easter, so looking forward to that, & not doing anything much.

Just having a shower & washing my hair takes it out of me, which I guess happens to all of you at some point.

Another lovely sunny day, so hopefully we will all benefit by it.

Take care my friends & a Happy Easter to you all.

Amycakes.

Hi Amycakes,

I SO know what you mean. I find having a bath and washing my hair a major challenge at the moment. People have suggested I try the shower but I couldn't stand up long enough for that. At least I can sit down in the bath!

I am also very shaky and the endocrinologist has put me on beta blockers, which helped a little. He thinks I may have Grave's disease but his method of diagnosis seems to be to experiment on me and then retest after a few weeks. Why do Doctors think six or eight weeks isn't a long time? It is when you feel terrible!

The rheumatologist doesn't want to make any changes until the endo has come to some conclusion, so I continue on 12 1/2 mg pred in the meantime. Some pain in shoulders and right hip but not too bad if I don't stand up or walk for long!

Have a great Easter,

Love Cathy G

CathyG - do you have a separate shower? If so, get a stool that will fit in the shower - you won't believe the difference it makes to how you feel when you just sit under the shower to get clean rather than the effort of getting into and out of a bath. If there is room, a plastic garden chair is even better in terms of effort. If the shower is over the bath and a stool in the bath isn't on, you could get someone to make a seat to go across the bath (it may even be possible to get something from Occupational Health - you are entitled to help because of the PMR, never mind the other problems you have). Do you remember the holder things you used to be able to get to set across the bath to hold sponges, soap and so on in front of you? A thick plank with blocks to stop it slipping sideways would be all you really need at a push.

I know just where you are coming from about being exhausted after a shower and hairwash! When I was really bad I had to get to the shower within a few mins of getting out of bed or I was too stiff to get my hand up to my hair. And then I had to sit for half an hour in my towelling dressing gown drying off to summon up enough energy to put some clothes on because once I got downstairs for breakfast there was no way I'd get back upstairs :roll: :lol: - I dreaded needing the loo! We'd been in a house with a loo on the groundfloor as well before, the extra stair climbing and not being able to drive for a while absolutely brought me to my knees - literally! Mind you - I wouldn't have dared get into a bath, I'd never have got out again :oops: :roll: :wink:

EileenH

Thank-you Mrs G for those kind words.

Eileen and CathyG, my problems seem minor compared to the ones you decribe. I think I have come off easily with PMR so far!

I hope you all have a Happy Easter weekend - I have 9 peope here to cook for and am hoping I can limp around without making myself worse.

The weather is lovely here. Hope it is where you are.

Beev

beev - all gone now, that was all for 2 or 3 months when it first hit and before I got steroids! But you still wouldn't catch me getting into a bath - just in case! :roll: :oops: :lol: If you have nine people to cook for there must be at least some of them who have 2 functional hands: show them the veg peeler, the washing up bowl/dishwasher and the bin. Encourage them to use them as directed :lol:

We've just walked into the village for dinner, first outing since the KNEE - they had got in asparagus specially for me! My lovely friends! And we booked a table for asparagus or lamb on Easter Sunday lunch - methinks asparagus for me and lamb for him should ensure I get a decent portion of lamb too :wink: (he eats NOTHING, he came home with half his Wiener Schnitzel tonight! :roll: )

Happy Easter one and all

EileenH

Eileen - I love asparagus. When we lived in Germany I used to look forward to Spargelzeit when all the restaurants did it!

Will think of you when I'm cooking the turkey! :?

By the way, GP and physio have said that I might need a steroid injection in my hip if this bursitis doesnt clear up in a couple of weeks. Will that, in your opinion, mess up my reduction regime or badly increase my overall steroid load??

Beev