Am I in Denial?: Is it truly unreasonable to... - PMRGCAuk

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Am I in Denial?

SMH4CRNA profile image
63 Replies

Is it truly unreasonable to believe I will be able to return to my profession after a 2 1/2 year absence? Am I putting my patients in jeopardy due to my own denial and stubbornness. Let me throw in ego and pride as well. Should I strive for acceptance that I simply cannot return in my current state of being? I understand this question cannot be answered here on this forum since so many more situational factors are unknown. So, my question to the group is this. When did you finally make the decision to retire from your full time profession? Did you go through a grievance process of denial, bargaining, anger and reach acceptance? Is it truly self centered to force myself back into a highly stressful job with long hours to soon because of fear I won't be able to return due to time away requirements?

I'm 49 years old. My profession is anesthetist. Retired military with a pension. Financially stable.

Current PMR journey:

Tapered from 15mg to 10mg. Other than a few withdraw symptoms (fatigue) the taper has been insignificant. Now, I'm back to 10mg where I started prior to returning to 15mg due muscle aches, fatigue, morning stiffness and ect. Goal was to get to 10mg prior to my rheumatology appointment on the 10th of Aug. I don't feel like I did 2years ago when I was riding a bike 10-20 miles a day, but I don't feel the same as I did prednisone free with PMR symptoms. Despite feeling better, I don't feel normal. Morning stiffness, muscle aches (fever like), fatigue warranting an afternoon nap is the norm, but can waver from mild to moderate depending on the day.

I currently applied to an advertised full time position at a local hospital and awaiting a decision. Chose this hospital due to location, healthy military population and I'm familiar with the system. Figure this will decrease the anxiety I will feel upon return. No part time options available. Alternative options, which is not confirmed is volunteer work through American Red Cross to ease the transition back. Yes, other work options is on the table, but this is my profession I have worked for and it truly pays well and much to give up.

Again, not looking for you to make my decision. Just want to know how you dealt with your situation with the possibility giving up your profession with PMR.

Thank you

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63 Replies
suzy1959 profile image
suzy1959

I was lucky in that I was self-employed and could reduce my hours as needed. I kept on having to reduce more and more until after about 6 years in when I had to give in and retire at 59 years. I was very reluctant but by the end I really wanted to stop.I am just wondering if your employers have offered you any support to return gradually? Going straight back to full time work is a big ask and there should be some help available. You are still young and may not have PMR as long as me, so it would be a shame if you had to stop work altogether.

SMH4CRNA profile image
SMH4CRNA in reply to suzy1959

New employer. No longer work for my old employer. Issue is I have been out of the profession for almost 3 years. There will conditions to reorient back into the profession. Difficult to ask for special requests based on my condition prior to ever working for them.

PMRpro profile image
PMRproAmbassador

You are very young for PMR - not too young but very young.

This is something that doesn't arise as often as you might think purely because most patients are not so very far from retirement age when they have to deal with it and pulling retirement on health grounds forward a few years isn't quite as monumental a decision. I was 51 when PMR started - but I was self-employed and all I had to do was sit in front of a computer and churn out words in English instead of German and finally unfold myself from the seat in order to be able to move at all. And I could go back and check whether what I'd written made sense without putting anyone or anything at risk.

On the other hand - we were a bit older than you when we made the decision to retire early. My husband was increasingly disillusioned within the NHS in the UK because the R&D work he did in his field was being squeezed out and the pleasure of working was being buried in paperwork. He'd also had a very nasty brush with cancer in his early 40s and the effects of the chemo/surgery/radiotherapy that saved his life then were bound to catch up eventually. He would sit down every couple of months and do the sums - could we retire soon. Were we financially stable? Just about and we took the plunge, We had about 10 years of enjoyable living here in Italy before his health - or lack of it - caught up. But we had it - instead of spending those good years at work.

Not quite the same - but he did use his knowledge, experience and training to work for peanuts in another sort-of related field and I think he did find it just as satisfying. He also was scientific editor for the Proceedings of an international group and he continued with that until really the start of his final illness. It paid for a trip to the meeting for both of us as I was technical editor and latterly language editor and occupied us from July/August to New Year every year. But all of it was much more under our control when it needed to be than a contracted job of any sort. Money isn't everything - and you spend a lot less when you are retired!!!

I suppose what I'm saying is that you need to do your homework with regard to potential alternative roads. He found something that fitted - there probably is for you too. Locally our Pain Clinic is entirely run by the anaesthetists - but they have to be shared out and it was assessed Covid needed them more than the chronic pain patients did so we got left out in the cold. That is something that offers itself to you maybe. You know where you might/could fit in.

And then you have to weigh it all up - you know better than anyone else whether you are currently capable of doing the job of holding the life of a patient in your hands and fulfilling the hours required of you. But you have to be honest.

SMH4CRNA profile image
SMH4CRNA in reply to PMRpro

This is exactly what I needed to hear. Ironically you are the second person to suggest getting into "pain". Always despised this part of the profession, but it is an option. Matter of fact, I believe the VA will pay for the fellowship and I know person who runs the program. This may be an option.

Another option is teaching. Im getting a few certifications focusing on simulation, thus another option.

I'm financially set for life since I have a military pension along with disability. My wife will have a lifetime military pension in a few years. We are looking at Italy or Portugal to retire. We met in Italy, so it would be nice to retire to.

Challenge would be on my feet 8-10 hours per day. Stress is most likely got me in this mess, who knows. So, getting back into a profession that is highly stressful seems anti therapeutic. This is why I thought volunteering may be an option. Unfortunately, this particular place is not jumping up and down to help do this, sigh....

Money is not everything, I need to hear this. Plus, my mother died at 55 and my father got early alzheimers only a few years after his retirement. Maybe I need to see the writing on the wall and take the early retirement, hmmm.

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

I have to say - I can recommend Italy to retire to - but then, I'm biased ;)

You may despise pain management - but done well it is a very helpful field, speaking as a user! Here their approaches are not just based on medication - lots of other techniques employed too.

There seem to be several options you could point at, nothing needs to be full time, variety is the spice of life they say. And you are a long time dead! I have always said we live the wrong way round!

Skysey profile image
Skysey in reply to SMH4CRNA

I worked in education and children’s services for many years and enjoyed my job. The team I worked with were not only work colleagues but they became friends. I was diagnosed with GCA at the age of 57. I had been healthy throughout my career. In fact my manager had only recently mentioned how amazed she was that I had only had two days off sick in more than 10 years! The condition and high doses of prednisolone and accompanying meds affected my physical and emotional health. I was off work for over a year and although it was a difficult decision, I decided that I was no longer able to work in my demanding and at times stressful job. I was a workaholic and would sit up until the early hours completing urgent tasks. I realised that I would be unable to sustain working at this level. I did consider working part time but again knew that I would end up doing full time work in part time hours! I found this fact difficult to accept at first. However, I applied for early retirement on medical grounds which was approved. I have been retired now for 16 months. I am glad that I made the decision to retire as I have now got symptoms that could be PMR or Osteo arthritis. I miss my colleagues as we were a great team. But surprisingly I don’t miss the work. Hope you make the right decision for you. Your health is really important.

LozzaSandstrom profile image
LozzaSandstrom in reply to PMRpro

You are SO wise, I wish I knew you in real life. What an interesting careers you and your husband had and what great advice to SMH4CRNA - he has options - and maybe the anaesthetist/PMR journey are meant to come together at some point - what a serendipitous journey that would be!

Good luck in your journey sir, you are still young, you have options which is just so important to focus on so early on - you don't have your retiring head on yet, and you have much more to put into the world having cared for your father. Ego is vital, without ego we have no self worth so don't beat yourself up for wanting to have a successful and meaningful life - if we all thought like that there would be a much stronger economy and healthier one.

The fact you have money behind you and the possibility to retrain is such an opportunity - you need to see this as a fork in the road, not a dead end and you have so much more travelling to do - very good luck!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As already stated, probably many cannot answer your question as either nearing retirement or already retired. However many have experienced denial, whether that be on the employment front or on a more personal level, for the person they no longer are…

We often equate it to bereavement- and there are a few processes to go through, denial being one of them - with acceptance perhaps being the most important for the individual’s wellbeing.

At your age, it’s probably not unrealistic that in time you could return to what you consider a worthwhile job, but not at the moment whilst your PMR is active.

As PMRpro rightly says, it’s not just any job is it…it’s people lives in your hands, so you need to be 100% convinced you can take that responsibility.

Can appreciate you want to continue in the profession you have worked, studied and trained for over the years….but there may be other avenues that you can explore within the medical area that would welcome your expertise but that aren’t going to be as stressful for you.

I wish you the best in making your decision, but you have to be honest with yourself.

Good luck.

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

Thank you. Yes, there are other options for me. Just difficult to accept it. Of course difficult to accept when the family don't believe PMR is real. Makes me think it's not real and I'm just making it up. They continue to ask, when you going to return to work? Are you really retiring at your age? You can stick it out. You are to young to have it, blah blah. I did not ask for this. I need to remember I need to make the decision based on the evidence given to me despite what people think. Still hopeful in the future I will be speaking a different tune.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

It is difficult when friends/family don’t, or don’t want to, understand , and probably more so for a younger person than some of us old uns!

But it most certainly is real! And because most look well, everybody assumes you are…

I used to say, “I might look fine on the outside, but my insides are a different matter, I’ll explain if you like”… most didn’t!

Perhaps give them this to read…it’s not about PMR, but another immune disease - so applies -

creakyjoints.org.au/living-...

There are loads of links to original article

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

Very good article. It nailed it. Someday I feel great other days I'm done by noon. The fatigue is real.

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

There is also a DVD about how PMR affects us - made by patients and HCPs to try to explain to family and friends. I think the link is in FAQs

123-go profile image
123-go

I was well into retirement when PMR came along so had no reason to question whether or not I was doing the right thing. However, I absolutely agree with PMRpro's view- "........you have to be honest." You do! Working in an environment where people depend on you would be even more stressful if you were unable to fulfil your commitments and forcing yourself to carry on could be calamitous for obvious reasons.I'm sure that with your qualifications you would be able to settle into a less demanding job but still using many of the skills you have acquired.

May I suggest that you look at your future with a new vision where you are still needed but free from the concerns you have stated? I am convinced that there is something 'out there' for you where your contribution will be valued and where if you need some time off this will be taken into account and you will have no feeling of guilt if, on some days, your schedule needs to change.

I wish you all the very best and look forward to hearing about a fulfilling new venture as either a volunteer or as a paid member of staff.

SMH4CRNA profile image
SMH4CRNA in reply to 123-go

Retire to something versus returning back to. I heard this last week. Instead on focusing on what was, focus on what could be. When I think of returning to something I may no longer can do nor honestly want to do it's depressing. When I change my focus towards the future doing something I can do it's much more positive.

There is an American anesthesiologist who chose to retire early in his 40s. He no longer desired doing the job. No passion. He wrote a great article on the guilt of retiring early. I could relate to this. He stated the above in the article. He also spoke briefly of his experience suffering from an autoimmune disorder. He also stated, certain personality traits are proned to getting an autoimmune disorder. I could relate to this as well.

Thanks for your input.

cycli profile image
cycli

Such well thought out advice from everyone should help you. I note that you set a date target for rheumatology. Been there and flared. Sounds to me like you need to reduce more slowly and structured to match how you feel rather than specific numbers. From what I read here it seems you wouldn't be doing yourself any favours by trying to return now to your profession. Only you can really tell that. Whatever ones passion, profession, calling or what you almost lived for, this condition effectively stops us dead in our tracks and forces us to reassess our position. If like me you have been almost robbed of something you can no longer do, or had your entire forward plans for the next 10 years stopped then you will be grieving and make no mistake it is real and visceral. You are still relatively young so it is harder for you. Reassess when you are tapered and hopefully go into remission. You will still have the knowledge, but in the meantime since you are financially stable, consider alternatives that don't induce stress or stress you can't resolve. I still hope to get back to my cycling and develop the barns and make some more designer furniture but i have to get over this first. Even if I did it wouldn't be at the level I achieved before (Except for my designs). Best of luck.

SMH4CRNA profile image
SMH4CRNA in reply to cycli

Thank you. I guess I posted today for validation and understanding. I'm getting this from the replies. Only we can understand this. Some days I feel fine and other days I cannot get off the couch. It really is a day to day evaluation.

cycli profile image
cycli in reply to SMH4CRNA

Yes. Precisely. You can't target anything. It isn't a military exercise or objective. It's also bloody frustrating.

SMH4CRNA profile image
SMH4CRNA

Appreciate you telling your story. I'm a CRNA and wife is an FNP. I spent the last three years doing administrative duties for the military which was a personal choice for promotion and simply being burned out as a CRNA. I spent first couple years keeping skills up until COVID hit. Than I was restricted to doing COVID related duties to include mass vaccinations, testing and ship quarantine care. Honestly, this was much more stressful than being a CRNA. Needless to say, I questioned my choice. My PMR symptoms occurred following getting Covid prior to vaccination and really showed itself in Feb 2021 following vaccinations. Medical community don't want to touch that. Other stressor to include retiring after 23 years, father becoming disabled due to alzheimers where I became his care provider and moving across country. Stress, Covid and who knows may have triggered early PMR.

I have my DNP, so looking into teaching, military consulting or pain fellowship. I spent much time defining my identity as a CRNA, therefore this a difficult pill to swallow thinking I may not be able to return at full capacity. Part time would be fine, but to really do it after being gone for 3 years needs full commitment. Now, I'm getting employers not wantimg to touch me since I don't have recent case logs showing competency. This brings stress alone and a sense of failure. I second guess my choice to work my last position, despite being one of the best rewarding jobs I've ever done. Guess you can say I wanted to finish my navy career doing a navy job.

I honestly don't know where my future will lead me, but not returning as a CRNA is tough even though I don't miss it. Crazy huh? Ego and pride are huge defects influencing denial.

MrsNails profile image
MrsNails

Hi - it’s a tough call & deep in your heart you’ll know when……

I was on a Holiday from Singapore, Cruising to Australia & NZ - l really struggled but my Consultant had given me ‘permission’ to adjust my dose to keep me as well as l could be.

Anyway, the Band started Playing ‘Could l Have This Dance For The Rest Of My Life’ when l burst into tears & decided Work had to go!…..

I worked within the U.K. NHS & l had seen Occupational Health all through so applying for Early Retirement wasn’t too difficult & it was the best thing l did…….

As you are an Anaesthetist are there not other Options open to you? I’m the U.K. where we have Pain Management Clinics & they were (in my day at least) headed up by Anaesthetists - is that something that would interest you or is there any part time work in Teaching Hospitals or Medical University’s that need part time Lecturers?

Just a few thoughts 💭

Kind Regards & Best Wishes

MrsN

SMH4CRNA profile image
SMH4CRNA in reply to MrsNails

Yes, I'm pondering the idea of education or pain. This may be a realistic avenue for me.

Best thing you ever did, needed to hear this. Appreciate your time and input.

MrsNails profile image
MrsNails in reply to SMH4CRNA

I’ll drop you a PM about a Doctor l know.

Kendrew profile image
Kendrew

Some sage advice already received. I sadly ended up having to take full medical retirement after 2 failed attempts at returning to my job in a primary school Nursery class.

I really fought hard (with the full support of my SLT) to get back to the job I loved so much, but in the end PMR dictated otherwise.

Sometimes life throws us a curveball that just seems to appear from out of the blue. This was mine!

You seem fortunate enough to still have options .....the universe has a funny way of engineering what's best for us though, and for that reason I'm pretty sure that whatever you need will present itself to you at some point. You just need to recognise that moment!

Very important to remember that if your symptoms keep re-emerging, you feel fatigued or any symptoms become more severe, then you're doing too much and your workload is too much! Your health & well-being has to come first now.

SMH4CRNA profile image
SMH4CRNA in reply to Kendrew

Thank you. I feel like everyday I'm doing to much, haha. It's a fine balance for sure. Of course, this is what I'm afraid of since my job is unforgiving.

Kendrew profile image
Kendrew in reply to SMH4CRNA

All you can do is try it out.... whatever 'it' turns out to be. You'll soon know if it won't work for you. Good luck though. 🤞

piglette profile image
piglette

I find that my concentration is not the same as pre PMR, although I have carried on working from home part time.

Pawscat11 profile image
Pawscat11

Like yourself I was diagnosed with PMR at a younger age 54 ( undiagnosed for years before that) but I am not is a position to retire. I have a very physical job running a Christian retreat house doing all the cleaning and cooking. I have also just taken an extra part time desk job 14 hours a week to make ends meet after the income reduction due to covid. Having no choice whether you work focuses the mind a bit. I suppose I just take more prednisone to keep the symptoms at bay as I dont have much time to rest. I think its can be done but maybe I will have more issues later in life because of the higher steroid dose I need to 'function'. I am on 15Mg and I am 3 years in.

Burroughs123 profile image
Burroughs123

I started having “weird arm and shoulder aches” just before I turned 50. I was incredibly active, had just bought and was renovating a holiday home business, had two very sporty teenage girls, a hectic social life and a stressful but fulfilling part time job as a university lecturer. 5 months after turning 50, and days before the pandemic forced the UK into lockdown, I woke up in screaming agony. This coincided with my sister’s breast cancer operation (to the day). I’d spent the previous 6 months fighting for my work hours to not be cut, was getting over the recent death of my mum and was supporting my youngest daughter whilst she was getting bullied at school. Lots of stress! Something was bound to give… I had plans - big plans - to travel and eat and drink my way around the world, to dance all night in a club in Ibiza, to cycle on the Great Wall of China, walk The Camino in Northern Spain. Etc, etc, etc. I had got the the last hurdle of my MA in Creative Education. And now what????

The pandemic and lockdown strangely helped me make some valid, quick decisions. Drop the MA. Drop some work hours. The foggy PMR brain wasn’t as sharp as before, my head was in bits along with my body, and teaching online was completely knackering. I could then really concentrate on what was important. My daughter and my sister. Through lockdown I was able to walk to my sister’s house every day and visit her at a distance through the window whilst she struggled with the ravages of chemo and radiotherapy. And whilst my daughter was being home schooled (along with every other schoolchild) she escaped the bullies, made new friends and grew in confidence. Phew.

Since Sept 21 I’m back to face-to-face teaching and loving that I do it just 2 days a week. Any more and I would be exhausted.

I’m rambling. My point is, work isn’t everything. And, as Cycli says, we are all in a process of grieving for the pre-PMR/GCA us and the future we thought we were going to have. But here we all are, dealing with a slippery, unpredictable, painful disease and we just have to make the best of it. Got no choice.

You are an intelligent, talented man with the capacity to help lots of people with your amazing medical skills. These skills are flexible and so you can explore some different, interesting yet still stimulating and challenging avenues. How exciting is that??!

Predsharer profile image
Predsharer

I have had PMR for 20months and am in no way out of the woods yet. PMR has become who I am and the person I was feels like a distant memory. I have had to think long and hard about why I have this condition and why it isn’t abating in quite a the way I thought it would.Maybe the person I was didn’t listen to my body enough, thought I could manage stress when I wasn’t really managing it at all well. Maybe all my life I was ignoring the signs that I was doing more than I should, spreading myself too thinly. I know that in many way I’m still doing the same things, which is preventing me from being well. I say to myself everyday ‘you will never be well if you carry on like this!”

What I’m trying to say is look at who you are, your personality and how you cope with stress generally. Put PMR into the equation but be realistic about what you really want out of life and what you can achieve. You are young, look at the options that may bring peace into your life and give you a long and healthy life, rather than beat yourself up about a career that may not be the right one for you, PMR or not.

SMH4CRNA profile image
SMH4CRNA in reply to Predsharer

Thank you.

My lifestyle for me has been stressful. Don't know any different. I always seemed to be drawn towards the adrenalin. Now, I make an effort to lead a life without stress, but my own mind jeopardize this with uncertainty. When I have a clear path, than the stress will minimize. I agree, this decision needs to have my mental and physical health in mind. I have no doubt stress was the culprit behind me getting PMR.

Predsharer profile image
Predsharer in reply to SMH4CRNA

I think you’ve hit the nail on the head. Adrenaline sufferers do badly when it comes to getting off the Pred. If you try to keep going when your adrenals are stuttering into life you will end up back where you started.

Predsharer profile image
Predsharer in reply to SMH4CRNA

I meant to write ‘adrenaline junkies’ not adrenaline sufferers,

SMH4CRNA profile image
SMH4CRNA in reply to Predsharer

I believe it should be adrenaline suffers for sure. Than add OCD and Type A personality, trifecta.

MaritimeMags profile image
MaritimeMags

Hello. I worked until two years ago, when I was 66 and made redundant during Lockdown. I really was not ready psychologically to give up work. I ‘grieved’ for my working life, missing friends and colleagues. I had such an interesting job that, for over two years when working, my PMR did not bother me much. Then, after redundancy/enforced retirement, with the lack of access to a GP, I had time to research the condition and get to know my own body’s experiences with PMR.Your worries are understandable. You have a very responsible job with lives at risk. You have just lost your confidence after two and a half years by the sound of it. Maybe your worries are more to do with the mind than the PMR? Is there a brush up course you can go on? Work is not just a financial thing - it gives us an anchor in life to pivot around. Maybe return with reduced hours.

You are young. You have a vital role to play. You are needed. Go for it!

SMH4CRNA profile image
SMH4CRNA in reply to MaritimeMags

Yes, I'm taking a review course. Problem is since I left the military I have not found any employer wanting to rehab back to full competency. If I stayed in which I planned to do until plans got derailed due to various reasons, the Navy would have done this service for me. This would have been the way to go, but life had other plans for me. I have spoke with a few employers since retirement and they were not willing, but found a few who would but it would take a family separation, high high stress working environment and/or long commute. So I have placed conditions.

Although, you nailed it. The lack of confidence is truly causing stress for sure. Finding a job would have not been an issue if i continued to work in my primary profession. Now, the PMR needs to be considered though. So, if I can find an employer to work with me than it may actually be therapeutic for my condition since I'll regain confidence with a positive outlook. I'm still learning the boundaries in which I can or cannot work. This posting is slowly helping me identify conditions based on everyone's experience.

Thank you again

whitefishbay profile image
whitefishbay

Well when I got PMR I cut back my hours (one less per day) so I would get home and go to bed but I only worked in two schools - not high powered. After I few months I went back to my usual hours (9 hours per day but not standing). I think the hardest thing is getting your head round PMR and then taking it slow. Will you have to stand for the whole op as the anaethetist or can you at least perch on a stool? You have to build up slowly and everyone is different. Best of luck and take it slow but your life is not over, just different. Hang in there.

Karenjaninaz profile image
Karenjaninaz

S, since I had the same profession for 37 years and retired at 68 after breast CA I think now, I could never work in the general surgical OR. PMR is so all encompassing.However, you have years of experience to share with incoming students-the stuff you only learn by experience. Schools are short of good instructors. Classroom instruction would not be stress full; the clinical area would be though. (Think teaching intubations). This way, you would be contributing to the good of the profession in an honorable way.

SMH4CRNA profile image
SMH4CRNA in reply to Karenjaninaz

So good to hear from you. You know my story. So glad you chimed in. Thank you. I'm getting my certs in simulation, so hoping to do this.

Sojourn12 profile image
Sojourn12

What an interesting and thoughtful thread you've generated! I retired from teaching a few years earlier than I intended to--my long commute and full-time hours (plus lesson planning!) was just not compatible with the self care I knew had to do to treat my PMR. But I thought long and hard about exactly what it was that I liked, really liked, about my job. And it came down to interacting with the students and actually teaching them what they needed to know. So the week after I retired, I started a year-long course to give me specialized training in my field. I loved what I was learning and thrived without the commute and the long hours. And now, years later, I can honestly say that I didn't retire from, I retired TO. I earn money, pick and choose my students, work in small groups or 1:1, change my schedule every semester based on PMR activity, and work with a number of local profit and non-profit agencies. I'm much happier and have much more job satisfaction than I did when working full-time. For me, it was figuring out what I truly loved about what I did--and then finding ways to maximize it. I feel very, very lucky. I wish you the best of luck--and please keep us posted. Jane

SMH4CRNA profile image
SMH4CRNA in reply to Sojourn12

Thank you Jane for your experience. Retire to.....yes this sounds welcoming.

Harrigan profile image
Harrigan

You are the only one who knows how you feel can you cope without your afternoon sleep etc

PMR2011 profile image
PMR2011

I also was diagnosed young (age 52). I worked full time (40-50 hrs a week) as the nursing director for cardiac surgery at a large northern New England hospital...and was getting my Master’s degree. I functioned pretty well after I managed to taper below 5-7mg. Tho my husband did most household chores and cooking and I was generally asleep by 8pm! Then 6 yrs into it I was diagnosed with GCA which made me realize just how much stress I was under. Back on high dose Pred!I left management and joined the Risk Management team, which was awesome. Better control of my hours and less stress, tho still full time. When they asked me to take over the Dept while they recruited a new director I gave them 6 months and my notice to retire (which was this past January). And I must say, retirement has been great. Tho currently I am off Pred, on Actemra and able to be pretty active (currently building a shed at our vacation home). I did offer them one day a week which is mostly remote. I am proud of what I’ve accomplished despite having PMR, however do wonder if I might not have developed GCA if I’d reduced my activity and stress earlier.

SMH4CRNA profile image
SMH4CRNA in reply to PMR2011

Thank you for your insight. Stress really seems to be the ongoing evil to keep PMR live and well. Are you saying at lower doses of Prednisone you felt better which allowed you to work? I'm on 10mg with the hope to go lower.

PMR2011 profile image
PMR2011 in reply to SMH4CRNA

Yes, definitely felt better at lower doses once the sleepy adrenals woke up. I was about 4 years at 2-4mg depending on symptoms. That’s when I started hiking, building, taking longer vacations again. Certainly wasn’t 100% but definitely better.

Sharitone profile image
Sharitone

I was only part-time, but my job meant a lot to me - self-esteem, you know. I tried to go back just one morning a week. I managed just 4 weeks before it became unmanageable. I was given a generous 7 months before my employers decided they would have to get someone else. In the end, it just seemed inevitable. It wasn't what I wanted, but it was the best thing for me - and my colleagues. You're a good few years younger than me, but I think that's what it boils down to: the realistic thing is what will be best for you in the long run. Good luck with your decision!

SMH4CRNA profile image
SMH4CRNA in reply to Sharitone

I appreciate it. Same, work truly was/is my identity in so many ways. Thank you for taking the time to provide your experience and insight.

SMH4CRNA profile image
SMH4CRNA

I believe I can elaborate or at least try to clarify. Basically, what I meant to say is I feel better on Prednisone versus when I was not. Although, I am far from normal when I did not have PMR. Although, the truth is since I reached 10mg I have started to feel PMR symptoms (I think). Symptoms are vague and difficult to pinpoint. What I feel is fatigued, stiff in the lower half and run low grade fevers. At > 11mg I did not feel the degree of symptoms that I have now, sigh.....I really was hoping to continue to taper. I have my appointment with the Rheumatologist this week.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

…since I reached 10mg I have started to feel PMR symptoms (I think). Symptoms are vague and difficult to pinpoint. What I feel is fatigued, stiff in the lower half and run low grade fevers.”

Are theses symptoms the same as you had pre diagnosis? If so, then they are signs that your dose is too low at 10mg and is no longer keeping underlying illness under control.

Only way to regain control is to go back to previous dose that did give relief…and certainly don’t think about reducing until you have stabilised.

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

Yes, same. I figured this will be the plan, sigh.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

I know it’s frustrating -but it’s the only way, otherwise you ended up in yo-yo situation and result is more Pred rather than less overall.

cycli profile image
cycli in reply to SMH4CRNA

you figure right. unfortunately it is almost impossible to be certain of anything with this condition. so much can change almost overnight and then you start rethinking all over again. good luck

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

If you allow the inflammation to flare up you will be even further from your goal than you are now. You will end up having to increase the pred - or accept the same disability that put you on it in the first place. It might result in taking MORE pred in the long term. And when you do it a few times it can become increasingly difficult to reduce again.

There is no simple answer - if only there were!

SMH4CRNA profile image
SMH4CRNA in reply to PMRpro

Yep, concur 100%

SMH4CRNA profile image
SMH4CRNA

Update: Been offered full time position with interview on Thursday. Now, I sit here undecided to take or not. Currently in pain in the right hip, left shoulder and fatigued. Only able to walk short distance. Been like this for couple days. I'm on vacation which is making it hard. . I truly want to take position, but I ponder if it is irresponsible of me.

Continue to taper per Rheumatologist. My Rheumatologist doesn't believe I have PMR which makes this decision even that more difficult. Is this all in my head? CRP and ESR continues to be elevated, but all other labs are normal. Don't know, confused.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

Morning confused! Well afraid you’re the only one who can make the decision -and I doubt it’s all in your head … hip & shoulder yes, head no!

But to be serious you could probably manage the pain, but it’s the fatigue that’s likely to be the issue working full time. ..and if CRP & ESR still elevated then something is amiss. If you are fatigued now, how will you be if working full time ..and what can/will new employers do to make it easier for you

Some serious thinking required, so good luck with that, and please keep us informed .

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

Had to chuckle, "morning confused". How about, "morning nut case". Yes, this is a difficult decision. Hip and shoulder pain came without warning. Yes, a decision I only can make.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

Glad it made you smile -that’s my work done for the day 😊

Pains a bit odd if only one sided (and opposite sides at that) but that’s not to say it can’t be PMR …

but have you done anything that could have caused that…moving luggage/baggage bags for example -strange bed, different activities?

Pred affected muscles don’t need much to make them complain or is it joints-or can’t you tell?

SMH4CRNA profile image
SMH4CRNA in reply to DorsetLady

I did absolutely nothing to aggravate. This is the same pain I have had even prior to treatment. It's all good. I have decided to turn down the job. I need to focus on Shawn now so I can have a future.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SMH4CRNA

That’s probably a good move, although disappointing for you. ..you need to concentrate on getting better, good luck -and remember we are always here to help..Enjoy the remainder of your holiday..

PMRpro profile image
PMRproAmbassador in reply to SMH4CRNA

It is a standing joke in the UK - letters to newspapers signed Confused ofTenbury Wells, Furious of Lower Wallop, you get my drift.

I agree with everything DL has said. You are on vacation - did you pull a suitcase? Or haul it off the luggage carousel?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

"Furious of Lower Wallop" - you've found me out, born only a few miles from there!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Ooops - sorry, didn't mean to blow your cover ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

As I said to TC the other when she asked who I worked for..."might have to shoot you!" 🤦‍♀️

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Even bigger oops ...

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