Just diagnosed and feeling fed up

[JulieR2]

Hi I am wondering if anyone can give me some advice about work. I have just been diagnosed and started on the standard treatment. I have a full time job lots of driving and have been struggling. I am off work at present and plan to take a week off to rest and allow the prednisolone to kick in. I am 51. Everyone including my occupational health team think I am being opportunistic. People have mentioned reasonable adjustment etc. I know everyone is different but it would be great to hear how others have managed work and PMR. Any advice or insight taken gratefully.

[PMRpro Ambassador]

It will depend a great deal on how well you respond to your pred - life is very different post-pred than it is pre-pred.

"Everyone including my occupational health team think I am being opportunistic." - er, why? Your Occy Health people especially should be well aware how difficult it is at first with PMR.

[JulieR2 in reply to PMRpro]

Sorry optimistic what is post pred life?? I really am only 3rd day in! I was so relieved to get a diagnosis but now reality is hitting me. I am trying to absorb as much info as possible

[PMRpro Ambassador in reply to JulieR2]

Slow down and rest for now - don't try to catch up on what you didn't do for the last however long. The pred is only managing the symptoms - it has cured nothing. You have to do your part too!

And I promise - in a year you will look back and see how far you have come!

[JulieR2 in reply to PMRpro]

Thanks

[Rose54]

Hi

We are all different

I can only say how I have been

Most likely had PMR for 3 years before diagnoses got up one morning and unable to get out of bed 4 months off work hardly able to a thing so fatigued .

2 months staggered return to work in Dec 2015 .

Work 39 hours a week .Some days yes I am so tired all I can do is go to bed and sleep but things are much better but I have had to change a lot of things ,

No longer take work worries home with me .Don't worry if housework doesn't get done put myself first.

Its only due to listening to all good advice from this site and following the dead slow reduction I have got this far.

I am starting to reduce from 9 to 8.5 on Sat theirs no rush .

I can honestly say although it is a horrible illness it makes you take stock and see what really matters in life .

Best Wishes

Rose

[JulieR2 in reply to Rose54]

Thanks so much it great to have a place to get info and support

[jeanhaynes1966 in reply to Rose54]

Thank you. Reading your post has helped me enormously. I am going for my first blood test on Thursday to see if I have PMR. I have an underactive thyroid so my own doctor has put all my conditions down to this and never bothered with anything else. I am now seeing a different doctor who is so compassionate and he is taking me down this path to see if I do have this condition. I have been suffering these terrible symptoms for over 4 years now with no understanding from anyone. The worst I felt was when out walking the dog I fell over and could not get myself up for over 20 minutes. Your post has made me feel more optimistic that something now could be done and further down the line I will hopefully feel a lot better than I do now. Thank you very very much.

[Rose54 in reply to jeanhaynes1966]

Hi

I to have a underactive thyroid and take Levothyroxine ask GP to do vitamin B12 blood test as I found out I was only borderline and now take supplements. GP say you don't need to fast for Thyroid test but I do have test then take meds .

Always ask for printout of blood test don't settle for being told they are fine

Unfortunately in UK GP tend to go on TSH only and if its in range they say its fine I function better if mines kept suppressed so am happy if its ,5.

Lots of things causes pain and stiffness and I found I had to really push for anyone to listen to me I was told for years I had CFS.

Like you struggled for about 4 years with one thing or another but feel I am getting their and their is a life after being diagnosed with PMR

[jeanhaynes1966 in reply to Rose54]

Thank you for your comments. I can feel a little more optimistic now when I have my blood test on Thursday. I am being tested for B12 along with a number of other things including all sorts of antibodies. I will certainly ask for a copy of my blood test in the future. Thank you.

[piglette]

I carried on working with a desk job which is a bit different. I did drive distances up to one hundred miles, but then would get tired and some days would get really painful shoulders. I think it does vary from person to person though.

[JulieR2 in reply to piglette]

Thanks I will let you know how I get on

[PMRpro Ambassador in reply to JulieR2]

Like piglette I worked with PMR - and no pred! But I was a freelance translator, I only had to stagger from bed to computer desk! Not sure I could have got to work for a given time. With pred life became much easier.

I drive happily - and long distances. A few weeks ago I drove to the UK and back, hours driving each day were 6/6/3/3/6/6. By the time I got home my right thigh muscles were protesting as there was a lot of gear changing at times and I can still just feel it. But I've had a long time to get the hang of living with PMR! And I know exactly what I can and can't do.

[J-rowles2 in reply to PMRpro]

Thanks I think that's the scary thing accepting the differences I have to make to live well. Thanks for the reply

[Mary63]

I have had to cut work down from full time to half time....sometimes less than that. I am self employed so can, within reason juggle things a bit. I have had to cut down my sport (very important to me) by about 80%😞. I pick and choose what I do so that I have a life. But it is different life from my life before PMR.

However everyone is different. And each person has a different tolerance for work exercise and activity. I have learnt the hard way that it is not worth doing everything you would like to if it makes you exhausted.

Good luck. Definitely take it easy this week!

[J-rowles2 in reply to Mary63]

Thanks I think your advice is helpful I have literally been trying to fit it and try and do what I was doing. At present it feels like PMR is winning but I am sure I can rebalance

[PMRpro Ambassador in reply to J-rowles2]

You can't fight PMR - it will always win out in the end. Acceptance is a big step - but that doesn't mean giving in. It means coming to an agreement and working out how to do things a bit differently. You do what must be done, then you do what you want to do - and the rest comes lower down the list. Dust is very patient - it will always wait!

But that means learning to prioritise - and you have to be honest!

[Mary63]

Agreed agreed agreed. It's a hard learning curve especially for people who love to be busy, and actually get a buzz from that. But hey ho! Needs must!!

[TooSore]

For me - the six months between onset of symptoms and diagnosis/prednisone was the worst! Life was very difficult and I needed A LOT of help. Probably shouldn't have been working but luckily at least part of that time was summer so I had some time off and some part time work. Once I started medication, things got a bit easier. But like everyone is saying it's about pacing yourself, prioritizing, and learning to listen to your body. I work full time as a teacher. Initially I would come home and do no more than dinner. It's an adjustment because I was used to doing schoolwork or crafts. Now ( over a year into it) I can work and exercise a few days per week as well as some crafts or socializing. However - stress from work or illness, cold/wet weather, a late night, tapering prednisone- and its time to spend time sitting on the couch! There are always ups and downs, lots of questions on the way. This is a great place to ask questions, get reassurance, and vent because there are days when you'll be frustrated or discouraged. It does get easier as you go - as long as you take things easy and taper slowly. Good luck on the journey!

[J-rowles2]

Thanks so much.