hi,am so tired

[Flosy]

hi, i am fed up feeling sick,tired no enery every day.sorry i dont know i question before.i do rest every day.i went back to work last mon and tue did 16 hrs in two day,returned after 8 months off.am on 8mg pred,since 1st.nov,tapeing 1mg every month.got to see consulten in january.hope i am not being a pain.

[Koalajane]

I think that at this stage you should be tapering when your body is ready and only .5mg each time. Slow tapering is the best

[Flosy in reply to Koalajane]

so u think i shouldnt taper every month.

[DorsetLady PMRGCAuk volunteer]

Probably a combination of adrenals waking up and disease - so as KoalaJane says, smaller steps, but only when you feel ready.

[SnazzyD]

Well there’s no way I could have gone back to work on 8mg. I was lead to believe that below 10mg meant back to normal. Hmm. This can be a tricky time because the dose is getting low enough to not quite be enough steroid to get you through a normal day. However, adrenal function hasn’t been really woken up yet for most people it seems. I found myself in a limbo land of exhaustion until I got low enough for the adrenals to get the message, about 5mg. Life doesn’t seem to get the message either. I limped on down with 0.5mg every 6-8 weeks because although lower doses stimulate the production of cortisol naturally, you don’t want to leave yourself with a dangerous deficit if your body is not ready. I was told by the endocrinologist that I could do 1mg per month but I declined, saying that I did have to be able to function at some level!

Tests for adrenal function are not reliable until you’re ideally below 5mg. So it may be you have to go through this difficult dose range with work drawing on your energy resources. It is difficult because expectations are that you are better when in fact the body wants to pull up the drawbridge again.

[Flosy]

Thank you very much for all your reply.

[PMRpro Ambassador]

I'm not surprised you feel like that having just gone back to work and done 2x 8 hour days - that would have finished me! MUST you work?

Plus everything Snazzy said ...

[piglette]

There is no way I could reduce 1mg every four weeks when below 10mg. I would be in a heap on the floor.

[SheffieldJane]

Not at all. I am just blown away that you can work at all. Having a shower wears me out. Maybe get a tablet cutter and just reduce by 0.5mgs. You are demanding a lot of yourself. Work couldn’t alter your job description to make it easier could they?

[MrsNails]

Hi Flosys

I’m so sorry to hear how you are feeling, it’s awful especially if you had initially improved.

I continued to work despite feeling so ill, l would have put my foot down if it was a Member of my family & not allowed them to work.....

But the first thing l would say is you should have had a phased return & at best only done only 4hours a day.....

At 8mg you are on the approx physiological dose, so we ‘need’ that level of cortisol (which the Pred replaces as the adrenal glands have switched off) so now your not on a high enough dose to deal with the PMR & ‘Life’ in general.....

It is generally accepted we shouldn’t reduce by more than 10% so from 9mg reduce by 0.5mg rather than 1mg. I’m doing that at 13.5mg->13mg but l’m having a lot of issues....

Maybe consider going back to 9mg & ask Occupational Health about working half days rather than a full day.....

Very Best Wishes

MrsN

[whitefishbay]

Working during C19 is extra tiring. You went back to work that is why you are tired. You will get used to it...take it slow.

[Heron82]

Where you asked to back to work FT without a phased return? A lot of companies allow employees to slowly build up their hours over a few weeks or months depending on how long they have been away. No wonder you feel tired. It may be worth speaking with your employee to ask if you can work a few hours a day for the first few weeks. I hope they are sympathetic with you and support this. You need to take things slowly and look after yourself. I do hope that thing improve for you soon.

[Flosy]

Yes I went back part time doing 16 hrs a week.it was very tiring I did 8hrs.for two days.

[PMRpro Ambassador in reply to Flosy]

Too much, too soon.

[MrsNails in reply to Flosy]

You’d be better doing 4days at 4hours....

[PMRpro Ambassador in reply to MrsNails]

As 2+2 with a day off in the middle!

[Flosy in reply to PMRpro]

Hi.iam back off work now because off furlonge,so my employer said it be better for me cause of my health.so off til 2nd.dec.he will then review it.x

[MrsNails in reply to PMRpro]

Exactly 👍🏻

[Flosy in reply to MrsNails]

Thank you.i agree.

[tangocharlie]

My heart goes out to you. I struggled to try and keep working for the first 5 years with PMR as I was only in my early 50s and self-employed and I got turned down for benefits several times by the inhumane benefits system that said if I could pass a box across a desk or touch my shoulders I was assessed as 'fit for work' and therefore in the eyes of the government, malingering. Eventually I ould take no more and I had to give up and fight for benefits, with the help of doctors and the CAB. As benefits are so hard to get, I'd recommend you talk to your employer about 'reasonable adjustments'. This could be for example shorter days, or non-consecutive days so you can rest and recuperate. Even now I find I can only do one or max 2 tiring things a week, and we PMR suffererers have to learn to pace ourselves or we just crack, requiring flare-ups and more medication. You would be entitled to regard your condition as a disability which means your employer has to help.