Still working
Posted , 16 users are following.
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?
0 likes, 46 replies
harriet93582 Nolal2
Posted
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.
tpaggs harriet93582
Posted
Strangely enough, my symptoms were just like yours, extreme fatigue, tender scalp, jaw pain, aching in my legs, low grade fever AND Drenching sweats during the night. Initially they thought I had GCA. I had to go to Ophthamologist and undergo a series of tests. My SED Rate and CRP Rates were off the charts! I, too wound up in the Emergency Room. However, my Rheumatologist told me that since all my tests from the Eye doctor was normal, I did not have any pain or soreness at my temples, and I responded immediately to 16 mg of Medrol. She told me if I had GCA, I would not have responded so quickly on such a low dose. though I was happy to hear it wasn't GCA, I always remained a little skeptical since my symptoms seemed to point to GCA. At the time, I did not have shoulder or hip pain which is symptomatic of PMR. After 2 years of being on Medrol, I am down to 2 mg/day but I've been stuck there for over 2 months. Just this past Monday, I tried following a reduction schedule someone posted here. I took 1 1/2 mg of Medrol, and then intended to take 2/mg for the next 5 days. (Then I was going to take 1 1/2/ day for 2 days and 2 mg for 4 days, etc.). However, this morning when I woke up, I had pain in my knee and pain in my hip. I took 1 mg this morning and will take 1 mg this evening and I will continue to do that for the next 4 days. I will then try once more to reduce to the 1 1/2 and see what happens.
EileenH tpaggs
Posted
Funny - the local rheumatologist here is of the opinion that for most patients who do not have visual symptoms 15mg is probably enough to achieve a good result. GCA can affect a lot of other arteries in the body and may not get to the cranial arteries - in that case you can have a lot of symptoms without risk to vision or any signs on examination of the back of your eyes. They only appear when the posterior ciliary artery or another artery supplying the optic nerve has its blood flow reduced considerably.
They all have their beliefs - but I'd rather err on the side of caution under the circumstances!
tpaggs EileenH
Posted
Well they scared me half to death when they were suspecting GCA and told me I could go blind if it wasn't treated immediately! I was sooo thankful when all the tests for my eyes came back normal,
EileenH tpaggs
Posted
tpaggs EileenH
Posted
Actually, at the time I was undergoing every test you can think of, I was wiling to take any medication at any dose. The only problem was that I am allergic to Prednisone and that's why they put me on Medrol. The doctor told me that if I had a bad reaction to the Medrol - we were in trouble because, to date, steroids is the best for treating PMR. Thankfully, I was able to tolerate the Medrol.
maid_mariane Nolal2
Posted
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
susan29426 Nolal2
Posted
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.
denisep911 Nolal2
Posted
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💜
molly1957 Nolal2
Posted
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.
adette01750 Nolal2
Posted
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.
Susanne_M_UK Nolal2
Posted
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.
Nolal2
Posted
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, 😀
EileenH Nolal2
Posted
"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.
Nolal2 EileenH
Posted
Your fortunate to be allowed to retire at 60, in Australia it was 65 but has been increased to 67. It's a joke really, how does one continue to work as a nurse which is physically demanding and PMR till then. It's near impossible to access your superannuation early unless you have a terminal or significant illness. I'm 53 so that's another 14 yrs of working life. I'll have to start buying a lottery ticket!!
EileenH Nolal2
Posted
No - no longer. I wasn't even able to claim pension at 60, I was 62 and a 1/3 by the time I was due to get it. They introduced a sliding scale at least, so the change from 60 to 65 was spread and you weren't suddenly told at 59 that you wouldn't be retiring next year as you thought but would have another 5 years to do - which is what happened here in Italy! And now it is being taken higher to 67 - while 40% of young people are unemployed, partly because of that massive hike. There is apparently pressure to take it back to 65 - I do hope so, brexit has made my future here rather precarious. I will get a pension and healthcare cover at 67, 9 months too late for safety! At present it comes from the UK.
But anyone now over 66 could I think retire at 60. In the NHS you used to be able to retire early at 55 pr 60 without losing any of your pension because of the stress of the posts. It's all changed, but never mind just nursing - I REALLY don't want a 67 year old paramedic coming to me in an emergency and them having to carry me down stairs! But the people who make these decisions are retail or factory managers who have never done the job and have no concept of safety. Look at the current doctors dispute? You can't spread staff who are barely enough for 5 day cover over 6 and maintain standards of safety.
We retired far sooner - took early retirement, losing 5% per year early of my husband's work pension when he couldn't face the NHS any longer and we reckoned we could survive on it by doing some consultancy. He did spread sheets every few months - and finally came through to me in front of the computer to say "I think we're there!". Then the NHS messed us about for over 6 months which meant we put our house on the market just as the market in the UK crashed - had it been on sale just 4 months earlier we would have got about 50K more! A couple wanted a 3-bed house by the hospital, they compromised for 2 as there was no other choice. They would have bought ours - and saved themselves money! In the meantime my translating work has gone the way of all flesh - the financial crisis did for that. I have no other way of earning but I now have my state pension. So's he.
In general - life's good. Could have done without Brexit though - my pension has gone down by over 100 euros a month already! The rest of our income has also gone down by 15%!
Anhaga Nolal2
Posted
Our old gov had raised it to 67 but not to take place for quite a few years, but new gov rolled it back to 65. On the other hand we are encouraged to work up to at least 70 by the way Canada Pension Plan is deliverd. If you don't collect until you're 70 you get more. But it's a tossup whether it's worth the wait, because the five years you don't collect stay in gov coffers and most people won't live long enough to collect enough to make up the difference. I opted to claim gov pensions as soon as I was eligible.
There's a disconnect in the way govs think in that we are constantly being told what a terrible drain we oldsters are on the system, and we should work as long as possible, yet we also, as boomers, are creating a nasty roadblock for younger people who can never get ahead. As though the minute we retire we start gobbling up government resources, never pay another sou in taxes, never volunteer or contribute in any way to society, never mind providing employment for all those young people who will be looking after us as we need various kinds of assistance.....