Just diagnosed with PMRA. Anyone successfully negotiated working full time with this conditions?
Posted , 16 users are following.
i got my diagnosis a week ago, and started to get some relief with the symptoms after 4 days of 15mg prednisolone. I'm due back at the doctors on Monday. I had been hoping that I would be ok to go back to work on Tuesday (I'm a 53 year old secondary school teacher), but still feeling so washed out and exhausted after the slightest effort. Is this something that eases once the inflammation gets under control a bit more? I just want to feel normal again,
3 likes, 18 replies
betty75074 caroline79970
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tony80950 caroline79970
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I wish I could tell you that it would get better once the pred kicks in but it probably won't. From all the people I have chatted with the fatigue and lack of stamina is a major side effect of PMR and the pred. I am a tennis official and found that this issue caused me to stop working lines at tennis tournaments. I tried exercising, working my life cycle but I could not gain any stamina. This doesn't happen with everybody but it is more common than not. Good luck
Tony
MrsO-UK_Surrey caroline79970
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ken78211 caroline79970
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tina-uk_cwall caroline79970
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However, I'm so glad that you seem to be making encouraging signs of relief already. Honestly, things will get better, but you are in for the long haul with this condition.
don't let the powers that be make you taper to soon. Look up the Bristol PMR plan then when you get to 10mgs, which will be for a while yet, follow Eileen's slow, slow plan. All the best, christina
carol16456 caroline79970
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I was diagnosed in November 15 .It took me 3weeks to get in a good place with all the aches ,and felt good . When you start to cutdown your steroids people who know sujjested we drop as slow as possible at those times .Good luck Carol
EileenH caroline79970
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https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
This post has a load of links to other support sites and medical papers about PMR.
I worked with PMR and no pred for 5 years - but I am a freelance translator working from home. I know others who are teachers or classroom assistants have struggled. If you need to work you will probably need a bit higher dose to manage the symptoms but it will take up to a couple of months before you really feel up to a lot and it also depends a great deal on what subject you teach and your teaching style. And the pred MAY give you brain fog if the PMR hasn't - or there could be a double whammy. I'd take time off until at least after Easter and then discuss it with the head. However - have you got exam classes and is the curriculum finished? If so and it isn't - is just doing those classes an option?
You will feel normal again - just not yet. The pred does nothing for the underlying autoimmune disorder that causes the symptoms we call PMR and it is that that causes the fatigue. And you can't hurry PMR, it comes when it likes and goes when it likes.
Mrs.Mac-Canada caroline79970
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I was the manager of an insurance office and used to love my job and the people I worked with. Prior to being diagnosed I was in a lot of pain and wasn't sleeping well at all. I soon became impatient and just didn't want to be at work. Once diagnosed I was almost pain free but still couldn't sleep, was still grumpy with tears thrown into the mix. I started working only 4 days a week and that was even hard. It was a fairly stressful job and I finally took retirement early. I am 65 and realize that most younger people don't often have that option.
I think it is important that the people you work with know about your PMR and, even though you may look the same as you always did, you are not that person right now. You may need to change your hours of work to rest because once the pain is managed many of us find fatigue the worst problem.
Sorry, all this sounds awful but you will find that once our get your pred to where your inflammation is managed you can do many things albeit at a much slower pace.
AND there is always Mrs. O, our beacon of light, here to show us PMR will go away if we follow it's rules.
Wishing you pain free days and sweet dreams.
Diana🌸
christine_fay caroline79970
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Luckiy I had only taken the job as a temporary measure while my company went through a dead phase... I am now doing about 3 days a week but very intensive... Last weekend I cooked for 30 people at a country house weekend Big 21st birthday party... I am 71 so not doing too badly... I still get the 4 pm exhaustion and lead suit/coal bag coshes....I sort of manage but all days are different... When I get a big job I seem to make enough adrenalin to enhance the Preds and manage to get through but the come down for 3 days after is so painful.
ptolemy caroline79970
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julian. caroline79970
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It seems to take time. Time to adjust to the PMR, to recognise the symptoms and separate them from anything else that's going on. Time to adjust to simply having a chronic condition. Time to understand how its effecting you (because you are different to me). Time to find the minimum dose of pred which just adequately suppresses the symptoms. Time to recognise and adjust to any pred side effects. Time for those around you to adjust. It changes over time. And time for it all to go away.
Its a chronic condition, not an acute one which can be fixed with a course of whatever. Sorry, there isn't a quick fix. For some it may be hard to accept and get used to but I suspect its an important step to managing.
I've been working from home - computer system. I'm 65. Male. The "brain fog" and mood swings from the pred have been hard to contend with but relieved at lower doses (now on 6mg/day). And of course I can stop working when I want each day. I had to learn to walk away from conversations (instead of becoming frustrated and angry).
The "brain fog" (pred brain) manifested itself in part as a detached feeling, I lost my reference point, didn't know if I was high or low or what. Floating. Not grounded like I usually am. Very disconcerting and unsure how objective my judgements were. It will be different for you and hopefully not occur. Short term memory was effected - I've had to take notes for the second time in my life. Problem solving not as easy. Concentration drifted. Better as my pred is reduced.
Some of my pred highs were like being in a low grade goon show or a continuous Monty Python sketch. Strangely enjoyable, but I warned people I was "feeling silly".
My fatigue comes and goes. I can sense a difference between physical and mental energy. Some days I simply couldn't concentrate and no amount of forcing would get me started. It would have been difficult to face a classroom. Some days I simply couldn't physically carry on - mind willing, body not.
I was undiagnosed for about 4 months in reasonably stressful conditions (independent Asian travel) with no practical way of stopping. Once diagnosed (stopped travel) it took time for me to work out what was happening to me.
Anything chronic can be like walking into a brick wall in life. Suddenly everything changes. For me, among other things, not having enough energy left over to attend to people things meant lots of conversations and moments went haywire, left me wondering "how did that happen". The more fatigued the more haywire. I'd been there before, about 25 years ago with a different condition but that only helped me recognise what was occurring, it couldn't make it go away.
With previous condition surgeon said "if you dug roads I'd give you 6 months off but an office is ok". Bad advice, big mistake going back to high pressure project office too soon. Leading a meeting of 25 people to a conclusion which was easy became difficult or impossible when not fully mentally alert. Destructive for all.
Difficult to describe the frustration at not being able to do some of the things I used to, or as easily as I used to. But not enough energy to waste on being frustrated so don't bother. Manage it.
So, time to see what the preds do. Time to adjust the dose and hopefully start reducing slowly. When reasonably stable and a bit more used to whatever cards the PMR and pred have dealt you ease into work slowly. One class at a time. At whatever speed works, but going too fast creates problems. Like being swallowed by a snake in snakes and ladders.
After nearly a year of pred I'm far from "normal" but my condition is manageable.
Important step is/was talking to those around me. Not to extract sympathy. Simply so they knew that something was happening. I'm guessing an important part for you would be discussion with school head - so he/she/it can help. Spouse and family.
Basically for me it was about learning how to manage my self and my life, all over again. And that takes time.
All this sounds negative. Its not. Just trying to describe the journey. If you know what may happen its easier to recognise it when it does and then manage it. But take time to make sure it really is happening rather than imagining it because you read it somewhere. Your journey will be different to mine.
The positive side is its all manageable. I didn't consider the alternative. Just a case of taking the time to work out how for your condition and circumstances. There isn't a goldilocks spot where everything is "perfect" or "normal". Its not a balance between pred and pain. But there is a combination of PMR suppression, reducing pred and activity which will work for you.
Just an example. Not really a different day. On Friday I started at 6am, drove one hour to a 4 hour high pressure project meeting, drove back, did some work on my truck, a half hour of gardening, and I was still restless until going to bed early at about 20:30. A bit achy. Saturday frustrating with 99% humidity (Australia) which turned to rain so not a lot done by anyone. Six months ago I would have gone to bed on return from the meeting. 9 months ago I would have got someone else to drive me and stopped the meeting at less than 2 hours.
caroline79970
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EileenH caroline79970
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Julian mentioned "spoons" - google the spoons theory by Christina Miseriando if you are interested.
Some people who couldn't cope with the loss of control turned their diet into the area they could control. MrsO is an expert on what to add to your diet as antiinflammatory aids and also on what it is maybe better to leave out. I have to say here I never found anything being omitted that made any difference, be it alcohol, gluten, wheat, nightshade veggies, coffee or whatever. But adding things as MrsO does probably does help.
Glad you are feeling less rubbish - it will get progressively less rubbish!
frogmella caroline79970
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Hope things stabilise soon but as everyone says it an individual fight. I had symptoms for around 9 months dragged myself in to work before I finally was referred to a rheumy. Looking back I should have not pushed myself so hard and ended up in hospital with some kind of hypertensive crisis and breathing problems. I work condensed hours now and its still a struggle with the extra days recuperation but if the house is untidy/unkempt I have learned to live with it. I want to work as being off for 3 months was no good mentally for me. Im trying to have a more chilled approach to life and best advice is be good to yourself !
julian. caroline79970
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someone had a spoons model ..
I use whatever metaphor comes into my head - imagine a bucket full of energy at the beginning of the day, use it up early and there's none left for later, use it a bit at a time and get to the end of the day. Easy really ......... at least easy to say, not quite so easy to do!
julian.
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Probably just semantics. I meant I manage my life. The PMR / pred combination is just one of the many things which has a big influence but I can't control which I accept, accommodate, and manage my life around.