Getting my come-uppance!: I have had PMR for nearly... - PMRGCAuk


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Getting my come-uppance!


I have had PMR for nearly 2 years, and was diagnosed 19 months ago. At first I thought (naively I now realise) that the steroids would sort it all out, and life would go back to normal. I had found this forum before diagnosis, read everything avidly, thought 'those poor things' who have to pace, give up work, sport blah, blah. I just KNEW that it didn't apply to me!

So I carried on working full time and finished my book and got it published, continued to play tennis when I could. All this time I presumed my fatigue was because of working hard, and once the book was finished I would be fine. Well....NO. So reluctantly I realised I was not superwoman and gradually embraced the idea of pacing, and started working half time instead of full time.

Still felt exhausted,so last Friday I hung up my working clogs and retired.

Watch this space.....

48 Replies

I retire also in a year due to pmr

It will be a big change I know. I am hoping it will help my recovery.i am at 17 months 12 mgs. I will watch your progress. Wishing you well xoxo


Good luck

I too was diagnosed about the same time

I heeded all advice on here after managing to get down to 8 Preds in April was doing well .Working and resting but this illness is a law to itself. Flare back to 15 Three months of sick the fatigue and side effects of Preds are the worse .

OH visit tomorrow at home hoping they will let me reduce hours at work. Not able to retire yet

I think I have been one of the luckier ones as had very little pain once on Steroids

As my GP admitted last week

Medically they inform us we will be on Steroids for 2 years and then we will be ok

but in all her time as a GP she has not meet one person who this has happened to she says ignore all the side effects once on lower dose they will go and with a positive attitude we will recover .

I say no to people enjoy having time to read ,knit or just do nothing

One thing I have found helpful is Bowen Therapy does not work for everyone but I will try anything

DorsetLadyPMRGCAuk volunteer in reply to Rose54

Hi Rose,

If you're on the correct level of Pred, then you shouldn't be having pain. But what a sensible GP, at least she realises the "2year scenario" is bunkum! Plus, yes, any side effect can be solved - so many doctors get hung up on that side of things, and I think it makes the patients more concerned than necessary.

Hopefully you will get some joy with your OH visit tomorrow, please make sure they fully understand the restrictions that PMR places on you in the working environment.

Let us know the outcome.

Rose54 in reply to DorsetLady


I had independent review two weeks ago where it was stated due to side effects of Steroids I was not fit to work. When returning to work would be willing to reduce my hours if possible , that I would not be able to work evenings and ideally a job where I was able to sit but move about every half a hour .That my walking was limited also a brief explanation of PMR

18 months ago OH said may need time off in the future so I hope all has been covered .

I have managed to reduce 1mg a week so have gone from 15 to 12 so fatigue has improved so has my blurred vision ,sleep, and anxiety few aches today but its random so hoping it steroid withdraw as only reduced Sunday .

I know fast reduction but went from 8mg end of April to12mg start of May then 15 two weeks later.

This was due to burning pain back of neck which GP said was flare but I wonder is their was a problem X Ray show cervical Spondylitis but this is just normal wear and tear for my age .Pain was still their on 15 but has hopefully now gone .

Am going away to visit family on Wed for 10 days so have two weeks to see how things go and take it from their .

Will be going back on dead Slow Method

Hope you are OK

Will let you know how things go .

I have packed Steroids for every eventuality


DorsetLadyPMRGCAuk volunteer in reply to Rose54

Good, sensible girl. Enjoy your time with family.

I'm good at the moment thanks, just come back from 10 days holiday with family in Spain -missing the pool already, although weather here in Dorset doesn't make me miss it too much!

Rose54 in reply to DorsetLady

Hi DorsetLady

update of meeting today

Return to work in two weeks time but only if feeling ok will be reducing hours from 7 to 5 a day .

Will be on phased return they will be looking at my rota as I visit clients in their own home but don't drive .So need to keep to buses or limited walking .

I must admit company I work for are brilliant so am very lucky


DorsetLadyPMRGCAuk volunteer in reply to Rose54

Ok, that's good. But if you're walking and catching buses between meetings it will still be stressful, so don't be a martyr!

I know it's easy for me to say because I had already retired before I had GCA, but your health must come first, so if it's becomes too much you have to let the company know. Don't keep things to yourself, that way you'll only add pressure to yourself, and delegate as much as you can...that's not always easy I know, especially if others don't do things the way you do!

Take care, and please keep us updated on things...and good luck.

Rose54 in reply to DorsetLady

They are planning my diary to keep me in one area which I have to approve some of my visits are a hour or two long so not to bad .

I am not going to take any chances only returning on understanding I shout if struggling will be having 1 to 1s with my Line Manager.

Their is a chance we may have cuts to services in March 2018 and if so I will apply for voluntary redundancy .

Thanks for your concern


PMRproAmbassador in reply to Rose54

Hallelujah - a doctor who tells the truth!!!!

And honestly folks - being retired isn't bad at all. You need a lot less money to live on because you aren't rushing around looking for short-cuts and don't need posh clothes for work. And the nice clothes you have last so much longer...

Rose54 in reply to PMRpro

I didn't like her to start with but have warmed to her good job as I see her nearly every two weeks at the present time.

As for retirement as far as I can see due to the age going up to 67 the younger generation will all be on sick pay for many years before they retire so word of warning to them don't have PMR .

or at least not until their 67

I have enjoyed my 3 months sick cant wait till retirement


Hidden in reply to Rose54

Because of range of illnesses i have I effectively retired on illl health at 46. Yes 46. I had spent 10 years getting PACT IN FOR DISABILITY new equipment that helped me continue to work. Staff Meeting and teaching were supposed to be timetables so I could take my specially provided that I could have lunchtime at some point to manage diabetes. Upshot was that non of the meeting were done within the OH assessment parameters..i.e. on 12th floor of building where lifT broke down a lot..the upshot being that by 46 my body and brain said No!! Since then other things like fibromyalgia hypothyroidism and pmr have joined the party.

I have made the most of this low income early retirement but would go back to work if I could be promised reasonable to good health. But when you can't promise employer that you will wake up in a state to work and the stress and anxiety that brings with it and the impact that stress has on body ....viicious cycle. Good luck to all those who find a way to balance life and PMR and continue to work especially those who have no Nhs to fall back on. Now am 56 going on 106!!

kellykel in reply to PMRpro

I love reading your posts - I always look for them!

Thank you Kelly, I try to do my best to amuse You Lot here.. ;-)

I agree, PMRpro.

I've been fortunate to accumulate enough 'posh' (= nice / quality) clothes, shoes etc. during the past 10 years to last me until I'm 106 years old. Must be my feminine side... (nothing implied)?

My problem isn't about whether to get-rid of any of them - more about how to get out more often to enjoy them! ;-) :-D

MB :-)

p.s. What's this thing called 'Retirement'? - an alien concept to me.... :-D

Mark, I love and adore men with a feminine side. Bravo! Xxxxxxx

Ohh.. Linda: Yep, maybe I have a (q.) 'feminine' side (but no confusion about my gender orientation in other ways!).

DorsetLadyPMRGCAuk volunteer

Hi Mary,

well done you! Now you can concentrate on YOU, and you'll probably find that you now have the time and energy to enjoy the good things in life.

Neither PMR nor retirement stop you living, it just means it's slightly slower than before - and much more relaxing - you do what you want, when you want!


Sandy1947 in reply to DorsetLady

How are you feeling? Better I hope. Realize I'm new at this but I feel like I can only do one morning activity, eat lunch by 1:00 then day is virtually done. Life went from energizer bunny to slow crawl. I get into bed at 2:00 pm in the afternoon dragging myself, lie around, eat dinner by 6:00 pm, read or watch TV bed time is around 8:30-9:00. Prod at 5:00 am. Now I'm with friends and family on Nantucket. We are going to the theatre at 7:30 pm tmrw night and I'm starting to panic. Should I just rest all day, skip a 2 mile or less walk? My spoons are disappearing!

Thanks coach!

DorsetLadyPMRGCAuk volunteer in reply to Sandy1947

Hi again,

If it were me in your situation, I would have a nice restful day, doing as little as is needed so that you are fresh for the evening.

Methinks you still haven't got your spoons organised properly yet. I know it's difficult when you're so used to being able to do anything you want, and multi-task with your eyes shut!

Does it really matter that you can only do one activity in the morning? You have to remember that not only does the underlying illness make you fatigued, the Pred can do as well. For the time being, just do short walks to get a little exercise and fresh air, and if possible reward yourself with a coffee at the end, or part way.

I think most people find the pacing aspect the most difficult to cope with initially, but if you don't then you just feel worse.

I think it's a modern phenomenon that if we're not rushing around like a whirling dervish we should feel guilty, well don't! Learn to enjoy life in the slow lane for a while! It's quite enjoyable when you get used to it....and if you can do it!

Enjoy the theatre.

Sandy1947 in reply to DorsetLady

Thanks for helping with spoon organization. I appreciate the help. Just not used to one activity a day...feel like a slug! I do get the concept of less is more implementation will be my focus. I love a project!

Have a wonderful day Dorset Lady!

kellykel in reply to DorsetLady

Grateful everyday you are on the site!! You're posts make a big difference in my life.

Thank you to all who responded to my post. Now off to France for a week for a wedding and a rest! Life's not so bad!


I'm jealous!

Here in USA, I can't retire. Hubby had a heart attack last summer and he can't work anymore, leaving only me to pay the bills.. Neither of us is old enough to retire, and just the medical insurance premiums would wipe us out if we didn't have my employer's plan.

So work I must!

Actually, I'm glad. It keeps me going whatever the weather and whatever the day brings. I get 15 minutes in the early morning to feel sorry for myself, and then I get on with it.

I'm one of the lucky ones., I suppose. I can still get on with it...

Sandy1947 in reply to GOOD_GRIEF

Great attitude! Slow motion, unpredictable shoulder pain, black and blue under my eyes, bed rest in the afternoon is quite a wicked adjustment. I guess it will take more than 5 weeks to accept the changes. On Nantucket with friends and family. The only mention of PMR has been my friends on the forum! I think they are afraid to talk about it. It's probably a good thing. My eating is so finicky. I will have chicken and vegetables for 3 nights. Went out for lunch and was able to just have a salad. Get up hungry during the night...cottage cheese, blueberries and walnuts.

I am thankful for my blessings. Thanks for letting me rank. I feel better already.

GOOD_GRIEF in reply to Sandy1947

I'm hearing you.

Last year at this time I was swimming from Dune Beach to Coopers Beach in Southampton - 2.6 miles - in the ocean. Just like I did all my life.

Now I can't even walk across the sand.

They tell me it gets better. I choose to believe them.

Cause what choice do we have?

I'm not giving up!

Sandy1947 in reply to GOOD_GRIEF

OMG 2.6 miles in the ocean....impressive.

In Nantucket with my sister and 2 friends. Walked 3.1miles (not all at once), came back, so starving, I couldn't wait for them for lunch. In bed at 1:30 in the afternoon! Get up during the night and eat oatmeal, walnuts and berries or yogurt, cottage cheese, nuts and fruit. Helps me go back to sleep.

Do you live in the city? Are there support groups in NY or NJ? Can't believe you still work. I took 2 client calls, I'm a financial advisor to urban school employees, and they exhausted me. Took the summer off and doubt I'll be up to dragging my heavy briefcase in September!

We def will get better. Our miracle is coming! Hold on!

GOOD_GRIEF in reply to Sandy1947

I live in NYC, on Staten Island. I don't know of any support groups for PMR/GCA in the area.

We spend weekends in Southampton. Once I get there, I'm so wiped I either do some serious "couch surfing", or hang out by (or in) the pool.

It's not working that's hard for me. It's the commute. 1/2 mile walk to the bus, ferry across the harbor, 1/4 mile walk to the office. All told, it comes to a mile of walking each way. And I live on one of those very steep Island hills. I have no worries about whether I get enough exercise, though.

I love Nantucket. The Vinyard, too. And the Cape. One of my favorite beaches is Coast Guard Beach.

Maybe we'll both be energetic enough next summer to meet somewhere.

Wouldn't that be great!

Sandy1947 in reply to GOOD_GRIEF

Yes, you certainly do get enough exercise. It's been freezing here since we arrived. It is still great to hang out with people I love, appreciate the beauty and have a change of scenery.

Last night I had a horrible time with shoulder pain. Pain level varies from day to day.

Yes, meeting when we're both stronger sounds like a great idea. I'm happy you go to the Hamptons on weekends. I go to the city. Love the summers because it's empty and the vast number of people don't suck my air!

Going to the doctor on Monday. Take a bus into Port Authority then subway to Columbia. I'll probably go to my apt. after that.

Enjoy your day. I appreciate the connection.

DorsetLadyPMRGCAuk volunteer in reply to GOOD_GRIEF

You're right to believe them - it does get better. living, breathing proof!

Think of it as a sabbatical Mary. You'll spring back one day, just have your next book percolating away in the background.

I am giving in and giving up work in October.I thought I would be able to carry on for a couple more years.I do ridiculous hours and it's so stressful there(dental practice).We've had a new computer system and we are so busy on top of that,I've recently decided that I don't like people.I can't cope with the rude,stroppy and demanding public anymore.I'm close to tears most days.

When I was first diagnosed with PMR nearly 2 years ago I read somewhere to avoid stress,overworking and lack of sleep!

Ohh, Sandra, you sound totally frazzled :-(.

Maybe the best emotional survival strategy is to walk away from Stressful situations and put yourself and your health first. That said, I well-know that, for some of us still in our working lives, this can bring other challenges in terms of filling the gap income-wise.

Either way, try to keep you chin-up in the meantime. Your / our physical and emotional health matters most - the other practical things in Life can be worked out, somehow ;-)

MB :-)

Thanks Mark 👍I've definitely decided to leave the workplace ,it's been imminent and I can't put it off any longer.I have to put my health first now😃I'm counting the weeks and paydays!

PMRproAmbassador in reply to markbenjamin57

Our income is far lower than when David was working - but we have more money left over at the end of the month!

bunnymom in reply to PMRpro

That's what I like to hear!

Sandy1947 in reply to Sandradsn

Stress is def the enemy. I applaud you for taking the courageous step to give up your practice. Good things will follow. Stay strong!

PMRproAmbassador in reply to Sandradsn

Yup - all helps! I found PMR itself made my fuse even shorter than usual (if that was possible) but most people say pred makes it worse too!

Are you a dentist or an assistant? Dentists can always get their own back... ;-)

Sandradsn in reply to PMRpro

I'm a dental nurse which I enjoy and do reception too ,which I hate! I'm so irritable and stressed most of the time.This morning I was confronted by a patient who got his appointment times wrong but he blamed me! I didnt even book it.I wish it was my practice I'd be laughing all the way to the bank!!

PMRproAmbassador in reply to Sandradsn

Why can't people just admit they're stupid? You have the piece of paper in front of you!!!!

Retiring is an option?

You are just two steps ahead of me. I was diagnosed 5 weeks ago, am in the process of selling part of my business and realize I must pay attention to the PMR invasion. Not happy about it simply because it's change. Not sure how to approach the new chapter. I was always a worker bee, not too many hobbies besides the gym, theatre and cooking. Creating a new life, once I accept my new "companion" should be exciting but I'm not there yet!

My forum friends inspire me to live day by day. Good luck. Stay connected.

Well done. My story is very similar. I am now retiring from work but will build my social life up. Work was high pressure that turned to stress after PMR set in. No deadlines, projects to manage or early meetings and travelling. I wasn't going to accept it either but once I did a great weight fell from my shoulders. This is just a new chapter in my life and I can adapt. Hope it all goes well for you.

Thanks again to even more people who responded to 'Getting my come uppance'. I used to be such a patient person and working as a nurse needing to remain so was really important. BUT i was so irritated by everyone and everything, and remaining kind, calm and empathetic increased the stress and fatigue.

I am very lucky to be able to retire fairly easily as I am 65. Now hopefully I will be able to feel well enough to do the things I want to do rather than what I felt duty bound to do.

Happy days!!!

Enjoy your retirement. Old age may not be for sissies but it's a b...dy great time to do what you want.

Sondra I love your picture. I think it is how I look at the moment! Most people who put a picture on this forum look so nice I don't want to add one at the moment. Agree with you about old age not being for sissies.

Hi Brixhamhampster. Thanks. :-) I did that little doodle in the bad old days when I did a thing called work. It was my desktop display pic. How prophetic - I didn't have a moonface then but I sure do now!

(see full strip - click on link)

Thank you so much. They are fun. Lightens the mood when I am in need at the present

Thank you v much sondya. I am now going to live the life I can!

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