Still working

Bones, joints and muscles
1

Firstly I just wanted to say thank you so much to everyone on this forum. You guys know so much more about PMR than my GP! It's helped me so much 😀

I'm just wondering are many of you still working? I'm a nurse and I'm finding it so difficult some days. I also watch my 18 mth grand daughter once a week, the next day my body feels wrecked and I can barely get myself into bed. My arms feel bruised when you press the muscles. Is that what others experience?

Also, can anyone recall when they first started getting PMR symptoms, were you under stress, over working etc?

2

I really don't know if there's a big difference between PMR and GCA disease, my rhum doesn't give me details. I have GCA n I believe that goes along with PMR. I only hear about PMR.mon this site.mI had symptoms for a long time, my face hurt, my jaw hurt, my head was tender and kept thinking it was sinus problems. Then I had unexplained fever and I had fatigue worse then I ever thought possible, I was so tired I couldn't move. I became real ill and just stayed in bed, was to tired to move n my scalp was so tender, so I went to ER and they admitted me to the hospital. It took them five days to diagnose me. So to answer your question yes extreme fatigue and stress is part of the disease,for  me anyway, I I don't work but from what I hear on this forum is that you need a lot of rest with PMR. Hope u get to feel better.

3

Hi Nolal

I was working and in a very stressful position. I complained about back pain for close to a year prior to diagnosis and leaving work. I eas also getting depressed thinking it was work but now knowing the back pain and depression were early signs with the stress at work my Dr. Had me off on 3mos leave. During this time my symptoms got worse to the point of excruciating pain.

There is no way i could return to work. Maybe one day but with all tbe side effects and lack of sleep i wouldn't be able to function. I don't have the energy to put in a full day and I'm active. Don't know how you do it.

Mariane

4

In my case, over-working, no doubt. I own a restaurant and was working every day, 10-12 hours a day, lifting stuff I shouldn't have, dealing with a lot of stress and overdoing the comfort foods. At first I thought my shoulder pain was due to dragging heavy carts around, so I stopped doing that and it didn't go away, just got worse. I wasn't taking good care of myself in general, put off a hip replacement until it was hugely inflamed...Thanks for asking, because as I read what I just wrote, it's so obvious. Loved ones had been trying to get me to slow down, but I felt invincible. Well, I'm not. I hired someone to take over much of the day-to-day operations, and some days, like today, I just have to stay home and nap in front of the tv. Am fortunate to be able to do that. I was thinking this morning that if I had to rely on a job at this point, I couldn't do it. Best wishes to you.

5

Bless you all for still be able to work. I don't know how I did it. I retired in March and was diagnosed in May Some days are good and others are just impossible to get through. I also have fibromyalgia

This forum is the best and thank you all💜

6

I too was unable to work due to PMR I did try but was just getting too stressed as I was unable to do what I normally could till the day came I broke down , my GP wanted to put me on the sick but I knew that I couldn't do that long term so decided to take early retirement , that was 11 months ago and I know it was the right decision for me as I am so tired and have had a couple of flares in that time so need to pace my self all the time .

Best wishes Molly.

7

Hi Nolal yes I'm a midwife and feel sore as you do, I'm not resting half as much as I should, have lots of other health problems, my sjrograns dental problems from this, borderline thyroid problems and 2 weeks ago had an A&E visit with posterior vitreous detachment of the eye, I have a sinus luft and bone graft coming up on Wednesday so the rest required now will hopefully give me chance to get some sort of routine going with medication and phased rest. You could be over doing things, pace yourself, look at the spoons methods. 

Take care.

8

I worked all through my 4 years of PMR in an office based, but quite stressful, job. I seemed to cope ok, but then developed GCA and after being on sick leave for several months, realised that I was not going to be able to return to work and I formally retired about 16 months ago. I've spent most of my retirement having to rest, being unable to do most of the things I've enjoyed in the past.

I don't think I'm necessarily a typical GCA patient and have had a particularly bad time with it. Others have been able to be more active.

9

Thank you everyone for your replies. Reading them, there seems to be all an underlying connection to initial stress in our lives before PMR. I guess it makes sense, when we're under stress we release cortisol, adrenaline and growth hormone(I think) which weakens our immune system. PMR is then able to sneak in. Take care and feel well soon, 😀

10

"My arms feel bruised when you press the muscles. Is that what others experience?"

Yes, that was one of the things I noticed very early on - it hurt dreadfully to have my BP taken. Of course it was pooh-poohed. Many people identify a period of stress - physical, emotional, trauma, infection, surgery - in the year or so before PMR developed. Stress itself isn't the cause and not everyone can identify it in the run up - it is just one factor overloading an already stressed immune system. Eventually a straw breaks the camel's back. It could be stress, it could be the flu jab, family problems, illness.

If you are still working AND looking after a toddler I'm not surprised you are struggling - I'm even more surprised it is only some of the time! Pacing is part of the management of PMR - and all you can do is manage the symptoms, there is no cure.

Although your respondees are working or had to give up because of ill health, really the majority of PMR patients don't still work - at present. Most of us were entitled to retire at 60 or in our early 60s so for a lot they were already retired. This will change now the retirement age has risen. I was 51 when it started but was self-employed as a translator, I didn't have to get to a real job, I just had to stagger from my bed to the computer desk in the next room- but anything more than that would have been next to impossible. As it was, I managed PMR for 5 years by falling out of bed, struggling into a swimsuit and crawling to the car - an hour at the gym in a warm swimming pool doing aquaaerobics kept me moving for the day. Then I was allowed pred - and the pain was almost gone.

11

You definitely aren't alone in this experience.  I was working part time in a very pleasant job and must have had PMR for at least eight months before I retired at 67.  I honestly don't know how people can manage fulltime work.  I had a lot of other stress in my life at the time, things which had built up over the course of a couple of years, and eventually I guess it was all too much and PMR arrived.  Retirement itself has turned out to be a major stressor owing to social isolation, but one does what one can, and I at least have the luxury of being able to schedule my exercise and rest times to help in recovery.  

If you are able to find a way to schedule more physical rest into your day that would probably help a great deal.  I know that may not be possible right now, but work on it!   smile

12

Hi Nolal, yes I'd come through a very very stressful and emotional time. My Mum was diagnosed with dementia, sectioned under the mental health act, then passed away! all this in 12 months I was a wreck!! Then within the next 12 months of dealing with my Mum's estate etc I became will with PMR so yes I believe it was my trigger going through this awful time.

Andrea xx

13

I seem to be able to identify with this, 14 months ago I had surgery, then changed place of work for 6 months meeting new staff working in a different town etc, then 2 months after that my son became ill, had to bring him home from university and then from December to March we had 3 close family deaths, including my aunt and mother in law. The house being sorted re the estate, and my son to look after, work and the pain just got worse and worse, I became so immobile the only person that took any notice was a relief GP who diagnosed the PMR, on steroids now feeling better but the stress is the consultants don't recognise it a PMR because I'm 53. Causing me no end of upset, reducing my steroids quickly, but I'm feeling pain again now, it's a vicious circle.

Hope,you feel better soon 

14

Hi Adette! I was 50 when I was diagnosed, very young too! But if you react to steroids within a day or so, it's definitely PMR!!!

All the best Andrea xx

15

Why not? The Guidelines say over 50 - if you have problems with the consultant ask to be referred to another. How are your GPs about it now the locum has left (I assume)? 

16

"But if you react to steroids within a day or so, it's definitely PMR!"

Afraid not - other things will also respond to pred and many rheumatologists don't accept that criterion any more. It is part of the overall picture though.

17

Hi 

I was diagnosed last May just before my 50 th (looking back numerous symptoms had been present over an 18 month period before my whole body just gave up 😬,initially off work for 5 1/2 months ...

I am a single working mum and although I had a phased return I'm struggling big time with my stressful role , poor mobility and the the complete exhaustion and pain .

I have experienced a number of horrible flares on my journey and am currently on 17.5 of pred ... Drop and the pain returns .

I have had to make a few adjustments to my working practice , but don't think that it's sustainable really .

if I do a day at work ..then fit for nothing when I get in ... Just had a weeks annual leave and was poorly again with a kidney infection so housebound again .

I also have a 9 month old grandson , and find at my worst I can't even pick him up due to the pain in my hands, arms and shoulders 😬😬😬

resting is vital , and trying to juggle home and work with PMR I think is impossible ...unless you are in a position to have support with all the home chores .

its like a roller coaster ride that I wouldn't wish upon anyone , seem to take 2 steps forward then 6 back .

what I have learnt along the way is to accept and listen to your body , something that we are not good at .

frustration of not being able to do the things that I used too , having to get people in to help with the simplest chores ....

I think that you need to look at the balance between work and life , at the moment I certainly am struggling and am currently looking at my options of retiring from the NHS after 32 years ...

huge decusion , but know that I'm not super human any more , and I haven't done my self any favours along the way trying to just get through each work day .

The forum has brought me great comfort during the toughest and darkest days .

Stay strong , and remember to be kind to yourself ...think we always put others first even when we're struggling .

take care 

Helene 

 

18

IS IT REALLY PMR??  Do you have hypercalcaemia (high blood calcium)?  If so like me, you might not have PMR, you could have Primary Hyperparathyroidism.  If the steroids don't work when you taper, have your calcium checked.  Primary Hyperparathyroidism is also sometimes misdiagnosed as Fibromyalgia.

High blood calcium causes a lot of the symptoms people on here have.  It's worth

getting it checked, it's just a blood test.  If it's high normal, then have your PTH level tested too.  Both levels being high mean you very likely have Primary Hypeparathyroidism (and not PMR).  High blood calcium makes your muscles feel like they are on fire.  It's worth checking, the treatment is completely different.

 

19

Hi nolai , yes im back at work after 12 weeks off because i was unable too due to pmr . I was on 20mgs of prednisone now 16 mgs . Ive only been on 16mgs for a week and so far so good. Im 54 yrs old and work as a slicer at the meat works in australia . Brisbane . I have to use a knife all day so my shoulders are fairly stiff in the mornings but bearable. I was training at the gym prior to getting pmr since i was 13 yrs old (41yrs) .Im not back to training but at least im making a wage . Too young to retire lol . I hope this gives you hope also, regards MORRY👍👍

20

I was 51 when diagnosed and working full time. I still work full time, thankfully I get paid to 'think' not 'do' and sit at a desk all day! The first year after diagnosis I was off on sick leave quite a lot, including months at a time, using all my accrued sick leave and started on my long service. Thankfully I'm able to manage at the moment.

I was under extreme stress for the 18 months - 2 years prior to developing PMR - with the 12 months immediately preceeding it being the worst.  My mother was very ill with cancer, and subsequently died, I had a breast cancer scare, I hated my job (since moved), a daugther miscarried then got pregnant again, and my 'wonderful' step daughter was the 'icing on the cake'. I blame her for everything lol