I am 62 female newly diagnosed with pmr,

Bones, joints and muscles
1

Hi,

So new to forums and pmr.

Newly diagnosed after 18mths of pain symptoms etc.

I feel worried angry and fed up is this normal.

Frustrated that I can do so little and I may not be able to work again.

Is anyone out there feeling the same ?

J

2

Hi Julia!

There is hope!! Don't give up!!

I felt like you, once upon a time, prior to being diagnosed (after several months of pain and disability. A few days after taking 20 mgs of Prednisone, the pain went away.

I resumed my life after that and stuck to this forum like a leech and ate up all the information provided. I had felt so alone, but the wonderful people on this forum really helped with that and also with all the wonderful advice.

Now on 2 mgs and reducing to 1 mg after 2 1/2 years.

Hang in there! Thinking of you.

Paula

 

3

I can understand your feeling..... I felt the same..... still do in some way.....now, after almost 2 years of PMR I am starting an exercise class/yoga again.  I was in too much discomfort before.  I am on 7 1/2 mg doing okay with an occasional Tylenol.

4

Hi Julia,

I too am newly diagnosed and first starting to grasp the extent of things.  Would be abnormal not to react the way you are. 

5

Hi Paula,

You so are so kind, I have not felt isolated before, and this is what prompted me to register with this site.

I am usually a fixer, family work pets, I sort things out.

So can't understand why I can't get my head round this.

I hope you are well.

Thanks again, Julia

6

Hi,

Thank you for you're quick response,

I have thought I was going quite mad.

Just can't get my head round, doing things slowly. and some days not doing anything at all.

Hope you are well, and you feel better soon.

Julia

7

I think most of us 'out there' feel the same, or have felt the same, with PMR it's pretty well universal.

I began feeling more in control when I realized that all the energy I had wasted on the negative emotions could have been used better by focussing on the things I could do.

I like to work with my hands, crochet, knit, embroidery, but far out in front is that I am a reader.  I will be eternally grateful that my vision even now, is unimpaired.  I also love to garden, which nowadays is just pottering around outside, with the occasional break to sit and watch the birds and sometimes photograph the more unusual activities!

PMR can be a hard taskmaster left to itself.  Much improvement can be made once you feel you are in control.

8

Hi Erica,

Thank you for you're quick response.

I started on 15mg about four weeks ago and felt like super woman, had severe headache so consultant increased it to 30, never felt so I'll in my life.

Anyway was down to 12.5 heavy gardening now back up to 15.

I have always been so lucky to have a lot of stamina, think I am learning with pmr, you do too much on a good day and have quite a few non- days as I call them, when you don't do anything.

I hope you are well.

Julia

9

Hi Julia,I was diagnosed 45 and am now 58. Medication keeps it under control. From long experience the thing not to do is go he'll for leather on a good day as it will bite you in the bum (so to speak)the following day.Hard to pace things so plenty of rest-easier said than done;even now I can overdo stuff but normally the next day I mentally kick myself.Good luck with your journey. The other day Eileen posted a link to a pacing off file-was for ME but equally applies to PMR

10

Welcome to the community Julia. I'd say that most of us felt that way. Being a fit and sporty 58 yo to feeling 90 within months was a shock to say the least. Felt like I was going mad until I was diagnosed and put on Pred. Luckily I found this site straight away and can honestly say that it has taken all my fears away. I feel in control of my recovery now and accept that it will take as long as it takes. 

Explore this site and read everything. I've not missed a day on here and always get something new to learn.

Ron.

11

"Anyway was down to 12.5 heavy gardening now back up to 15"

You have to learn to pace yourself - and learn what is your new normal. It is very unlikely to include heavy gardening! The pred is only relieving the inflammation that is caused by an underlying autoimmune disease that makes your immune system attack your body in error as if it were an invading virus or acterial infection. Your body remains intolerant of acute exercise - and you will feel as if you have run a marathon after walking up a hill. 

This is a link to a lot of information at the other end of a lot of links

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

This is a thread with links to articles about pacing - an essential in PMR, as in any other chronic autoimmune disorder, because they are all characterised by fatigue:

https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

Once you get the hang of it you will be able to do somehting most days - and overall, when you rest appropriately you will find that you get more done than if you rush at things and then collapse in a heap. Eventually you will find that you can do far more - but you will also have learnt to miss out the non-essentials. It is amazing how many things don't have to be ironed for example. Or that dusitng every third day takes about the same amount of energy that each day takes - but you had 2 free!

Swallow your pride - and ask for help. Learn to say "No" - it is the most useful word in the English language when you have a chronic illness. You may have been the go-to person in your family - they will have to find someone else for the moment.

Of course you are confused and angry - the carpet has been pulled out from under your feet without warning. You will learn your way around, you will feel better - but NOT until you learn the hard lesson of putting yourself first and making time for yourself. 

12

Hi Ron,

Thank you for taking the time to reply.

I have to say I have had a few replies and feel better already.

Apologies to all, I was sitting in the garden feeling sorry for myself and decided to register on here, I am so glad I did.

As you say it takes as long as it takes.

Patience isn't my strong point, but will try.

Hope you are well.

Julia

13

Hi.

Such wise words, which I will certainly

remember.

My annoyance is I can't do what I always have, perhaps if I organise my thinking to what I can do I won't feel so miserable.

There are many people worse off, just need to focus on the positive and "get a grip" as they say.

Hope you are well.

Julia

14

Never feel you need to apologise to us - we have all been there and know exactly what you are going through. We are here for you to come and rant, scream, sulk, whatever you need at the time. We've all done it at some point.

15

Hi,

Thank you so much.

I am kicking and screaming about it at the moment, but I know you are right.

The links will be a great help.

It's going to be a lovely day tomorrow,

so a little light weeding, not the big boarder I had planned to dig out.

Hmn, not good at being sensible, but learning.

Hope you are well.

Julia

16

The secret is to remember to stop before you are fatigued - which will be much earlier than it used to be.  But the nice thing is, after a rest you can go back and gently pick away at a few more gentle activities.  So you will still be able to do quite a bit - just take time to smell the roses you are planting, so to speak!

17

I am feeling like crying and ranting today myself.  You know how well I've been doing - progress outlined on health unlocked.  Well, it turns out that my long ago diagnosis of sarcoidosis is not as irrelevant as I thought, as it appears I do not metabolise Vitamin D properly and am now approaching a toxic level.  Feel rather as though my new carpet has been tugged out from under me because somehow this affects what happens to calcium in the body....  

18

Hi,

Bless you,

As a keen gardener not necessarily a good one, I don't stop and smell the roses, just bulldoze ahead, now I have think of the consequences.

Don't like it, pmr, but guess none of us do.

Hope you are well, enjoy the sunshine.

Julia

19

Those are very true words.  I've been learning to treat my body with gratitude and not focus diappointment or disappoinment on it.  I've felt for a while that pmr, once controlled, can even turn out to be a gift, because it gives those of us who've been the doers and shakers so often the opportunity to take time to appreciate the wonderful world we've been given the privilege to live in.

20

Thank you so much,

I might moan a bit, but will try to be more positive, can't help but be up beat on this site.

Registration on here the best thing I have done this week.

Enjoy the sunshine.

Julia