Pain doesn't kill, but.........!!!: it is dambed... - PMRGCAuk

PMRGCAuk

15,298 members β€’ 27,991 posts

Pain doesn't kill, but.........!!!

Constance13 profile image
β€’75 Replies

it is dambed difficult to live with.😏

I have upped my pred (7mg instead of 4 mg).

I have PMR and Seronegative Polyarthritis (it's inflammatory).

I will stay at 7mg for a month this time (PMRpro will be amazed)😊, then I'll reduce VERY slowly.

Just feeling exhausted and "touchy". Needed a rant.πŸ‘΅πŸ»

75 Replies
β€’
MrsNails profile image
MrsNailsPMRGCAuk volunteer

Hugs Constance πŸ’

Constance13 profile image
Constance13 in reply to MrsNails

Thanks Angela. If anyone understands YOU do! xxx

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to Constance13

Hope the extra Pred kicks in πŸ™πŸΌ do you take pain meds too? Try n keep warm n snuggly - not sure what the weather is like over there but it’s pretty miserable n cold here.

Extra Hugs πŸ€—

Constance13 profile image
Constance13 in reply to MrsNails

I take Cocodamol - 2 in the night, 2 during the day. I must say they help more/quicker than Pred but I know I need both.

prunus profile image
prunus in reply to Constance13

As another "oldie" I feel for you. Cocodramol is strong. I had to take that years ago when I prolapsed a disc with a sporting accident. Keep warm over there. I remember years ago our friends in Southern Germany had triple glazing even before I was aware of it in England. x

Constance13 profile image
Constance13 in reply to prunus

Yes, we also have triple glazing - even in mid-west Germany. Not everyone can afford it though.

Things are easier for me today. I rested all day yesterday and it has certainly helped. Will go very easily over the next few days.

PMRpro profile image
PMRproAmbassador

Constance - why bother forcing yourself to reduce? Is the doctor insisting on it? Has it helped?

Constance13 profile image
Constance13 in reply to PMRpro

I haven't 'reduced' - I've increased, 4mg to 7mg. It's taken me ages (as you well know) to take your advice. My doctor doesn't interfere with anything I do.

Unfortunately it's the PA which is making me miserable atm and I'm not absolutely sure the Pred is helping or not. Time will tell.

jinasc profile image
jinasc in reply to Constance13

Read our mutual friend posts and will say this to you.. "Why bother reducing at our age if if it takes 10 mg, 7mg etc so be it". xxxxx

Constance13 profile image
Constance13 in reply to jinasc

Thanks! I'm certainly going to try this time. Maybe a little πŸ₯ƒπŸ₯ƒ will help?!?

jinasc profile image
jinasc in reply to Constance13

πŸ₯ƒ works for me, just a tablespoonful in a coffee.........bless those medieval monks in France for their medicinal πŸ€”πŸ€”

Constance13 profile image
Constance13 in reply to jinasc

Ooooer! I have a single, pure, at least once a day. πŸ₯ΊπŸ€”

Baileyw06 profile image
Baileyw06 in reply to jinasc

I agree, I told my Doctor, I would rather have Quality of life than quantity!Most of the alternatives are worse than prednisone!

prunus profile image
prunus in reply to jinasc

Just realised that you like me has GCA dating back to the same year. As a matter of interest are you on any predisolone at the present?

jinasc profile image
jinasc in reply to prunus

GCA Feb 2007 Remission: Last 1mg on 31 Dec 2011- 2020 still in remission and counting.

It is in my profile............

Hello ConstanceI dont know if this helps but my doctor started me on 15mg and slowly reducing. Iam on 12.5mg at the moment. I tried reducing to 10mg week ago but had to up again at the weekend. Quality of life is my thinking. I wish you well and keep warm.

I believe you must be new to the forum Eamonnc04. It would help if you put more info on your profile, such as gender, country you live in, etc etc. Read other profiles by bopping their avatar.

I thank you for your kind thoughts, but I have had PMR and Polyarthritis for 10 years and have tried reducing many times. Started Pred on 30mg but the inflammation kept rising and rising (CRP over 100) - I was then hospitalised till they could sort me out.

PMRpro profile image
PMRproAmbassador in reply to PMRpro

I know - I can read!!! I meant, if it helps, why bother to reduce again? Or you go a bit higher again to see if more helps the PA and then find the lowest dose that does that.

Constance13 profile image
Constance13 in reply to PMRpro

πŸ˜‚πŸ˜‚πŸ’₯ That's what I'm trying to do. Can't understand why I have been SO affected these last two weeks. Older (what me?)πŸ€ͺ/weather/PMR/PA ???

PMRpro profile image
PMRproAmbassador in reply to Constance13

Your weather has been a bit pants hasn't it? Even gets me - especially damp and wind. Doesn't need to be extreme - just damp ...

Constance13 profile image
Constance13 in reply to PMRpro

Actually we're pretty lucky so far. Cold (well for this part of Germany - 4 degs), wind normal. But you've got it "humidity" it does me in every time.

HeronNS profile image
HeronNS in reply to Constance13

I bet the weather doesn't help. Keep yourself snuggly warm. I was wondering why I didn't feel so great today, and then I looked out the window at yet another very dark rainy day, and understood. Hugs.

PS I never heard of atmospheric rivers until a couple of weeks ago. Since then both East and West coasts of Canada have been flooded with critical roads washed out. Personally we're okay, but lots of people aren't.

Purplecrow profile image
Purplecrow in reply to HeronNS

So true, here in Washington state, US, we have had 13 inches of rain this month. New record, and more to come.I have pulled out my "happy light" to read by. Helps seasonal affective disorder triggered by rain and cloudy days.

HeronNS profile image
HeronNS in reply to Purplecrow

I don't really remember days which stay so dark you need to turn on lights. Certainly not several such days in the same month. I'm not a fan of winter, but I'm almost craving a long stretch of bitterly cold sunny weather; it seems healthy.

Constance13 profile image
Constance13 in reply to HeronNS

Cold, sunny weather is GOOD. Dull, rainy or humid weather is a b.......!

stillsdisease profile image
stillsdisease in reply to PMRpro

The slightest damp sets off stiffness on top of stiffness for me πŸ™ƒ

PMRpro profile image
PMRproAmbassador in reply to stillsdisease

Same here - why I hate the UK! We just get odd days of damp here - ou can stand anything when you know the sun will shine again soon!

Constance13 profile image
Constance13 in reply to PMRpro

Let's hope neither of us has to return to UK. A wonderful country but conditions are poor to say the least.

PMRpro profile image
PMRproAmbassador in reply to Constance13

The daughters were making noises ... Understandable I suppose. You have one this side of the channel don't you?

Constance13 profile image
Constance13 in reply to PMRpro

Yes! But each of them has their own lives to lead - as we did. Their lives are BUSY and whatever we say/do we must make our own decisions.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Yes - but they do want/need to be available in an emergency without the problems of travel. Remember, I am very aware of that.

PMRpro profile image
PMRproAmbassador in reply to PMRpro

PS - even if I were in the UK they wouldn't be able to "help" much given their work patterns and I can't live close to both - near one and some hours from t'other. Long way in either case from my friends in the UK who are mostly in the south and pointless living there even if I could afford it. Hence my desire to stay here as long as I can. But if you have a sudden problem then it is very difficult to move at the drop of a hat

Constance13 profile image
Constance13 in reply to PMRpro

When David retired we left Germany and went back to the Cotswolds (we had a house there as you know). It is a wonderful part of the south but we were so "verdeutsched" that we couldn't settle. Germany claimed us again.Decisions, decision! Wait a while - you can make up your mind at any time in the future.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Yup - it was hard enough for me going back after barely 10 years in Germany. We went back to Dundee - but our former friends had moved or moved on and we hadn't been part of their lives so were surplus to requirements. Durham was a bit easier to find friends, or so we thought, but we didn't fit their very narrow specifications, if you see what I mean. Scotland was probably not made easier by living in the country but that was where we could afford the size house we needed to make a granny flat - and we had a Polish extraction neighbour who made some assumptions - not least that were were all German. And that meant Nazis to him which he encouraged his children to believe too and ostracise the girls. It was rather nasty ...

Constance13 profile image
Constance13 in reply to PMRpro

Hmmmm!

Longtimer profile image
Longtimer in reply to PMRpro

Goodness me.....blooming cheek....can't imagine what goes on in different parts of the UK, well any country really until you experience it....I think all countries have their different fors and against.......especially their leaders!...

Don't get us started!!! πŸ€ͺπŸ₯ΊπŸ€”πŸ€¨

Grammy80 profile image
Grammy80 in reply to PMRpro

Let some time pass by, see how much trouble you can get yourself into....and life will unfold and as you do.....you'll roll and do the right things. Think of you oftenπŸ’–πŸ’–So glad you are getting your fair share of sunshine.

Constance13 profile image
Constance13 in reply to PMRpro

Of course! But...... there would be many many hours that you would have to spend on your own, in a place you might not want to be. SUCH a big decision for you. However, if you also lived near enough to good friends too it would probably be worth it. As you have said yourself you haven't many really good friends where you live at present.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Exactly my point - and no way I could live near the friends I do have in the UK. I don't have close friends here but I do know a lot of people.

stillsdisease profile image
stillsdisease in reply to PMRpro

And you do have all of us for company πŸ˜€

cycli profile image
cycli in reply to PMRpro

might be able to help there when it comes to decision time PMR pro. You never know what is round the corner. PMR should have taught you that. Keep well.

I cope by rating each joint pain level from 1-10 each morning, I find by isolating each area of pain it’s sometimes easier to cope with. Today my right knee is 3.5 my right wrist is 2 and my neck 2, hips 1.5 (so far), left elbow 5 and my leg injury (muscle rupture) is 3 so as a total it’s bad but individually not too bad as long as I don’t do any marathons πŸ˜‰ hope you feel better soon.

Great method stillsdisease 😊 Might try it myself x

Hope it helps, let me know πŸ˜‰

That is a positive way of looking at it!Today everything hurts because of the osteoarthritis and PMR!

Tomorrow will be better πŸ˜ƒ

It always is. Isn't it???????

Well if can be for some in some ways so hope it can be for you.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hope you soon feel better..and gentle hugs🌸

Good luck Constance! It can be very lowering at this time of year. πŸ’

I know! And I can't blame the weather really. We've had it pretty easy (so far)! When I think of what others have gone through it makes me shiver.

We have to make changes at this time of year, like it or not, in terms of hours of daylight (or not), depressing grey skies etc that affect people regardless, without any of the array of things thrown at us. The uncertainties over covid are always around and so on. Even if we think we are coping it is there. No wonder our bodies rebel from time to time.

Pain is a b* especially when we can't find a way to ease it. 'Touchy' on the scale of things sounds reasonable! Hope you get some relief soon.

cycli profile image
cycli in reply to herdysheep

so true. Still trying to suppress this GCA flare. Nearly there I hope but still on 32.5mg up from 22.5 Wouldn't have problem if rheumie hadn't wanted me on 20mg. by Dec. Weather not helping but coping.

Hope you feel better soon Constance x

Here's hoping 7 will do it for youπŸ₯‚

It certainly kills the mood......pain in my back (osteo in facet joints) worse last couple of days....damp here!....you have my sympathy....roll on spring!..🌞

You'd think we'd get used to it. After all it is the same every year - but of course we are NOT. Good to have got this old but it certainly has it's drawbacks.Better than loads of difficulties older people have though (and often have to cope with alone) - I don't know how they manage. They have my deepest respect

Just what I was thinking....I should be used to this pain by now but,.......oh dear....the sun is out now...but very cold here....When I sit, I want to stand...when I stand I want to lay down.....but we plod on...somehow....keep your pecker up!!....

Same here - sit/stand/move!!!This forum always helps me to put things in perspective. It keeps me sane. Well others might not think so, but......πŸ€ͺ πŸ’πŸ’

PMRpro profile image
PMRproAmbassador in reply to Constance13

Don't worry - we are all a tad crackers I suspect!

cycli profile image
cycli in reply to PMRpro

just a tad?

So sorry Constance. You are right, it doesn't kill but sometimes it wears you down to a point where you just don't think you can tolerate it. Sorry you are going through this and hope you make yourself as comfortable as possible. Those gals gave you some really good advice, liquid advice~!πŸ’–

PMRPro is amazing, I upped my dose from 3mg to 7mg last week I was in ridiculous pain and was literally crawling up the stairs on my hands and knees, never one to moan but since increasing my meds back to 7 I can walk and bare the pain. Honestly I was like a 97 years old lady not a 57 year old, good luck and hope the pain eases up for you. Take care Jan

It is advisable to take PMRPro's advice most of the time. I have fought PMR for 10 years and often reduced although Pro said "DON'T"!!!

I'm often in her bad books!😏

PMRpro profile image
PMRproAmbassador in reply to Constance13

:)

cycli profile image
cycli in reply to Constance13

agreed, so do it . I am. Keep well.

PMRpro profile image
PMRproAmbassador in reply to Littlejan22

Been there, done that, know the physiology - and have a set of very sensible doctors for whom QOL is everything. You are a long time dead - and there isn't much sense wishing you were there just for the sake of a couple of mg of pred!

Hope things will settle soon Constance. πŸ’

Constance13 profile image
Constance13 in reply to Jackoh

Thanks Jackoh. Not so bad today. I've rested most of the time (except for a horrid visit to the dentist)! Pain under control now.

Bcol profile image
Bcol in reply to Constance13

Glad to hear you are feeling a little better today. Think our dentists up here are back on on emergencies only, had my last appointment a few months ago cancelled and total silence since.

πŸ‘πŸ‘xx

Totally true. My first year was not good as I listened to the doctor's advice on reducing. Much pain and corresponding pain killers such as Tramadol and Dilaudid.

Now on sufficient pred to keep the PMR pains at bay. It's a long patient battle.

Hope you feel better soon Constance. Sending lots of hugs. 🌺

Thanks Terrie. I'm getting there - slowly but surely.

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