Fatigue

[kentish61]

Hello all, I was diagnosed with PMR at the start of Sept this year and started on 15mgs of Prednisolone then had GCA symptoms and increased to 40mgs which I’m on until end of Oct then been told to reduce to 30mgs for a month then reduce again. I am feeling better thank goodness but I’m left with extreme fatigue. I have never felt like this before and it seems all consuming. I’ve been off sick from work the last 3 weeks and I’m due to go back next Thursday but honestly don’t think I can. I work in retail. Is it normal to feel this tired and fatigued all the time. I seem to spend my life sleeping at the moment.

[Koalajane]

I think you are going back too soon. I work in retail and although only having PMR I had about 3months off work from diagnosis and then on return built my hours up. I still feel absolutely shattered when I get home. I know retail is getting very busy at the moment so take care.

[kentish61 in reply to Koalajane]

I know it’s silly to feel guilty being off sick but I do. This is my first sickness in 6 years. I guess I need to accept that I’m not ready to go back to work. This condition has knocked me for 6

[Koalajane in reply to kentish61]

I know exactly how you feel. I was off for 6 months in total and hadn’t been off sick in over 20 years. I think my doctor knew how I felt as she asked my husband if I was ready to go back to work!

[kentish61 in reply to Koalajane]

I’m grateful that my body doesn’t hurt so much but goodness I didn’t expect this fatigue. I do the washing up and then have to sit down for a while. I shower and it feels like I’ve run a marathon. How long could this go on for I wonder.

[DorsetLady PMRGCAuk volunteer in reply to kentish61]

How long will it go on? No one knows, but you can help by pacing -and remembering the spoons theory -in link I sent.

[kentish61 in reply to DorsetLady]

I’ve now been signed off work until 13th Nov. I have a rheumatologist appt on the 11th Nov so will discuss fatigue with him.

[PMRpro Ambassador in reply to kentish61]

Do - but unfortunately there really isn't a magic cure - we all wish there were!!!

Has anyone asked - have you been checked fr anaemia? It is common in chronic inflammatory disease and of course that doesn't help. Taking iron tablets isn't the answer there either unfortunately

[kentish61 in reply to PMRpro]

had bloods done at the hospital but won’t know results until my appt on the 11th Nov x

[DorsetLady PMRGCAuk volunteer in reply to kentish61]

okay .good you’re signed off work. But suspect Rheumy may well say - fatigue us all part and parcel of autoimmune illness….

[DorsetLady PMRGCAuk volunteer]

hi

Have a look at this info post -and particularly one of the links at end regarding fatigue -which unfortunately is all part & parcel of our illnesses -

healthunlocked.com/pmrgcauk...

On reducing -I would split the first 10mg reduction into two -so 2weeks at 35mg then next 2 at 30mg. Similarly with next if 10mg is proposed again. 10mg reductions may be in guidelines, but doesn’t always work-and don’t reduce if you feel any symptoms return.

As for work, I would be taking a bit longer to get back -and when you do, employers need to make allowance under disability act so talk to HR, line manager, union if you have one and look at this -

citizensadvice.org.uk/work/...

[kentish61 in reply to DorsetLady]

many thanks for your reply. That whole section you sent me is very informative and I’ve also taken a screen shot of your advice when I’m ready to taper. I NEED to accept this condition isn’t going away anytime soon x

[DorsetLady PMRGCAuk volunteer in reply to kentish61]

Yes you do need to accept it, and that’s not easy -but the sooner you can the better you will fair.

There’s always someone around to help so you are not alone ….although sometimes it can feel like it.

Take care

[PMRpro Ambassador]

Fatigue is a common part of almost all autoimmune disorders - and GCA is a serious systemic vasculitis so very likely to make you feel ill. In some people pred adds to the fatigue.

You have no need at all to feel guilty about being off work sick - if you are not well enough to work - you are not well enough to work.

[kentish61 in reply to PMRpro]

I’ve just read a section that Dorset lady wrote and she said acceptance of this condition is hard for us and that’s very true isn’t it.

[PMRpro Ambassador in reply to kentish61]

It is - but accepting it and that you are where you are makes living with it so much easier. Fighting it uses up so much energy that you can use much more productively.

[piglette]

You are incredible going back to work so quickly. Both GCA and PMR are life changing. I should definitely have a word with HR about how you feel.

[123-go]

Fatigue, especially in the early weeks is by no means unusual and something I recall vividly. I remember the occasions when I'd begun prepping a meal and then suddenly I hit that brick wall and I couldn't remain upright. There was no alternative but to shuffle onto my bed. You are correct, it does feel all-consuming and sleeping when you need to is the best thing you can do for yourself.

You are such a short way into your illnesses and you are probably still coming to terms with it all. Nothing should be rushed including your return to work. Resting as much as you need to isn't giving in, it's accepting what you are dealing with, taking the meds, listening to your own body and understanding it will not go on for ever....I promise 🙂.

If you decide to delay your return to work and face any problems, please let us know as we can give you some tips on how you might handle things. Take care 💐.

[kentish61 in reply to 123-go]

I know work will be very supportive and that’s one less for me to worry about even though I feel guilty for having time off.

[PMRpro Ambassador in reply to kentish61]

Why should you feel guilty? Believe me, when you are dead they won't erect a memorial saying "She gave us her all ..."

[Poshdog]

I was once told that guilt is a wasted emotion. It just takes energy and gives nothing back. Best to be avoided if possible

[Kafkaontheshore]

Hi Kentish61. You’re not alone with this. I was diagnosed with GCA, the large vessel variety, in 2020 and experienced fatigue which was incapacitating. I’d never experienced anything like it before. I’d try to do something and have to rest. Get up have a shower and then rest etc. I had to have five months off work and then had a phased return. I found the three P’s useful- planning, pacing and prioritising. Take care.

[montebello]

i am 10 weeks into a GCA diagnosis and, YES, fatigue has hit me strongly. For me, it SEEMS to hit most strongly after decreasing my PRED.... and hits about 4 days after the reduction and lasts about 3 days. I'm HOPING that when my reductions are smaller that my fatigue will also be smaller. Thankfully I'm retired, cause there'sno way I'd be able to work through the fatigue. Hang in there.

[RivieraWelter]

Just want to add my support and agreement with all the comments! I had a similar trajectory: PMR followed in short order by GCA. I have had good care and my husband is an internal med doc who has treated many with our problems and is a great believer in slow and steady and listening to what your body is telling you. Sad to say I am as stubborn as two mules and had two bad flares before actually listening to the good advice from this forum and my husband. As he says these are systemic diseases and the disease calls the shots. Your body is telling you to rest and recover (ad it will take longer than you would chose!) Hang in there, read this forum…there will be rough days but things WILL get better. All good wishes to you!

[PMRpro Ambassador in reply to RivieraWelter]

You are a very lucky lady! You husband should be cloned!!!! His like are few and far between