Fatigue

[dillydally1]

Diagnosed pmr January, commenced on 20mg prednisolone. pain went in 24hrs and felt full of energy but only for one week, doctor reduced my dose, completed prednisolone end of march. had blood test beginning april, esr 68, commenced back on prednisolone, has helped pain but I feel so fatigued, is this normal? I am at the moment taking 15mg and see my gp on Friday. would appreciate some feed back x

[polkadotcom]

Yes, quite normal, fatigue is a symptom of PMR and can also be a side effect of Pred. I could sleep for England at times but could also feel restless, unable to settle, all the usual signs which go with an autoimmune condition controlled by Pred.

Can I ask why your doctor stopped the steroids after so short a time? Steroid usage is usually counted in months and years with PMR, not a matter of weeks.

[dillydally1 in reply to polkadotcom]

Hi polkadotcom, Yes I seem to have all the above problems. does it get any better the fatigue. the doctor didn't say why she only gave me a short course, I then had blood test and esr was 68 so she put me back on, so I was only off the prednisolone for one week. I have down loaded information( I think it was you who told me of it) regarding the right way to reduce prednisolone, which I will take to my gp on Friday. Thankyou x

[PMRpro Ambassador in reply to dillydally1]

The fatigue does get better - but not in 6 weeks or on a fast taper of pred. It may takes some time - it depends on the person and some people become fatigued because of the pred as well.

I assume you have this reference? I've lost track of who I've given it to and who not - call it pred brain!

rcpe.ac.uk/sites/default/fi...

Six weeks (at least) on 15mg to start with - and a much much slower reduction and you'll get on far better. The Quick/Kirwan one is not too bad - some of us would like even slower - but you aren't there yet.

Rest is an important part of managing PMR - if you need to lie down, even sleep, in the afternoon then do so - you will get the time back in the evening. Don't push yourself to be "normal", you are ill and your body is telling you it needs to rest. Sleep is a wonderful healer and even when you can't actually sleep the rest is almost as good.

[dillydally1 in reply to PMRpro]

Thank you pmrpro. good advice, I will take notice of what my body is telling me. x

[dillydally1 in reply to PMRpro]

Hi, What is the Quick/Kirwan one x

[PMRpro Ambassador in reply to dillydally1]

rcpe.ac.uk/sites/default/fi...

is the paper - it isn't difficult to read most of it, it is aimed at GPs. They keep you at 15 for 6 weeks, 12.5 for 6 weeks and 10mg for a year before continuing the reduction. They get 1 in 5 patients having flares rather than 3 in 5 with other reductions. I suspect most of their flares happen at below 12.5 because they are a bit fast with the reductions by our ideas. But they are much slower than most. It's a good start with your GP because it is a recognised authority who is writing for them.

[dillydally1 in reply to PMRpro]

Yes that's the info I copied, gave it to my doctor to-day, I have lots of trust in her, felt a bit uncomfortable giving it to her, but she didn't mind.

[mk14]

I was diagnosed as having 'atypical PMR' several years ago - atypical because I was 50 and because I had to reduce Pred really slowly to avoid feeling awful. Eventually I found a routine that really helped the symptoms, including fatigue - alternating gentle activity with periods of rest, and gradually I found I could do more for longer in between the routines. I started sleeping in the afternoon so I'd have some energy for when my teenage daughters came home from school and found that the second half of the day (after my rest) is always miles better than the first. I'm able to do things I enjoy in the evenings now whereas I'd be too exhausted if I did them at any other time of day. It's a matter of listening to your 'PMR body' and what it can or can't do and working with it. Personally I found it helpful to have a definite routine because then I had a sense that I was managing things rather than my body managing me! Also try to love your body even if you feel it's let you down

[dillydally1 in reply to mk14]

Hi mk14, thanks for your reply. how long did you take prednisolone for? I'm just going through the turmoil of buying larger clothes. I can see from lots of people on this site that accepting pacing is the way forward x

[PMRpro Ambassador in reply to mk14]

I'm left to wonder what is atypical about needing to reduce really slowly! It's fairly common as far as we can tell.

Your experience with resting is exactly what a young woman with lupus who writes a blog has found. If she misses her afternoon nap she can't do anything useful all evening so loses far more of her day than sticking rigidly to her rest. I'm so pleased to meet someone who has personal experience of pacing working. As much as anything for us I think it is a case of by the afternoon we have become more flexible and physically able - but have struggled to get there and made ourselves tired.

[suzieh]

I am in year 2 of PMR -definitely feeling better and less tired. More good days now and no dizzy spells or feeling unwell first thing in the morning. If I overdo activities I occasionally have a day when I do nothing ( before it was just about alternate days doing nothing!) I do feel I am getting well again ( now on 4.5mg reducing to 4mg this month). Hope this gives you positive energy.

[dillydally1 in reply to suzieh]

Hi suzieh, it is good to know that your feeling better, which also gives me hope for the future. It seems hard at times to think of the long journey ahead with pmr x

[camerashy]

Hi dillydally

Down to 5 mg preds but feeling just as fatigued...I don't know if there is an answer...I haven't found one yet...very dibilitating thats fore sure.