Flattened with FATIGUE!

[Suin555]

Hi! I am new to all this sharing but I'll give it a go! I was diagnosed with PMR this time last year and began on 30mg of prednisone. I did ok for quite a few months and tapered down to 7mg in March. However I had an awful flare up recently and my doctor recommended going back up to 15mg.😡 I am really struggling with fatigue and at the minute can barely function.😭 I am on holiday in Italy at present but I am dragging myself around in a daze. I was so bad before I came last weekend I thought we weren't going to make it. 😱 My poor husband is so supportive but I feel I am spoiling his holiday! I am ready to jump off the nearest bridge to be truthful but I wouldn't have the energy! 🤣Can anyone suggest anything to reduce or cope with this horrible annoying fatigue! 😴😴😴😴

[PMRpro Ambassador]

What dose are you actually on? It isn't clear from your post.

And where are you from? You say prednisone - which suggests the USA to me rather than the UK where they normally use prednisolone.

However - it is probably the extra you are doing on holiday in Italy. You have travelled, adjusted time and are out of your normal environment. All very tiring even when well, doubly so with PMR.

Where in Italy are you?

[Suin555 in reply to PMRpro]

Hi PMRpro! We are in Tuscany and we are from Ireland. I have had this horrible fatigue now for a few weeks it's wiping me out! Also I am back up to 15mg & it is prednisolone! Sorry for the confusion! 🤓🤗

[PMRpro Ambassador in reply to Suin555]

You have had rotten weather then!!! I live up north, in the Dolomites. It hasn't been brilliant but rather drier than further south. However - that sort of weather affects me quite badly.

I still suspect that your fatigue is at least partly because you are trying to do too much - before you travelled you were racing around getting ready? Am I right? And then the flight and since then you haven't rested? The fatigue of autoimmune disease can only be managed by pacing and resting appropriately - the pred does little to help it although at very high doses there is the manic boost of pred which makes people think they are invincible.

You don't say when you went back to 15mg - but if the fatigue started while you were still on 7mg then it was possibly that your adrenal function had not caught up with the reduction. To reduce as you did is fast and you had probably overshot the dose you needed as well. 15mg might be enough if you weren't doing the touristy things - and Tuscany isn't renowned for being flat...

[Laura-14]

I find stress makes it worse and unfortunately I tend to get stressed over a lot of things, holidays included. Some days the fatigue is so debilitating and really sorry you are having this while on holiday. All I can say is do what you can, relax when you can and don’t go near any bridges 🤣. Best Wishes to you both xx

[Louisa1840]

Hello, I too was diagnosed with PMR a year ago and started on 20mg. At first I was like a budgie on trill - couldn't stop me!! Now I am down to 10 mg and really have to pace myself for the fatigue not to get me. So, if I have full day, I make sure the next few days are" take it easy" ones; it's all about pacing.

I agree with other replies about being on holiday and therefore not entirely in your comfort zone. Even though "we are on holiday" it still has more than an element of stress.

I also feel you are expecting to reduce too fast. I have tried to go below ten and have experienced flares, Don't be in a hurry to reduce; pred is our friend and not our enemy. It is dealing with the inflammation in your body. PMR will leave when it is ready to and between one and five years is considered normal.

Be patient and take care!!

[Suin555 in reply to Louisa1840]

Thank you so much for your reply Louisa1840 and I do agree that I came down too quickly to try to get off the pred! I do tend to be impatient though! Also I find it difficult not to feel healthy and well as I had always been previously! The fatigue makes me feel so down as I have had to cancel many trips and planned dinner parties etc.. with my friends and family! They have been so understanding but I just feel so frustrated at times! Thankfully at the minute the fatigue has decreased and hopefully it will clear off as I have another 10 days left to enjoy Tuscany! Ciao e Grazie

[PMRpro Ambassador in reply to Suin555]

We all want off pred, we all miss being healthy. But that is where we are and what we have to work with. The pred helps you feel more like being "normal" and lets you do things you wouldn't be able to manage without it. Pred gave me my life back after 5 years of PMR without any treatment - I do know the difference!

PMR is not a short-term condition, learning to live with it is important. You don't need to stop living, you just live differently.

healthunlocked.com/pmrgcauk......

[Suin555 in reply to PMRpro]

Hi PMRpro,e Grazie! I have been pacing myself over the past few days & am feeling rested again so hopefully I will enjoy a nice day in Tuscany today! Nothing too strenuous just lunch & a stroll. I know I must be more positive & make the best of a bad situation, take my pred & just try to enjoy the good days. I get very impatient & upset at times though. Grateful for your words of wisdom, ciao 👏🤗👍

[PMRpro Ambassador in reply to Suin555]

That sounds more like it!

[Hidden]

Morning Suin555

Sorry to hear you are feeling so awful on holiday, I’m afraid l’ve been there, done that & got the T-Shirt.

As PMRpro says you are busy, busy before you go away & then once you arrive you don’t want to spoil your husbands holiday.

If you can sit & tell your husband how awful you feel & try to plan out whatever is left of your holiday.

My advice would be to have Room Service for Breakfast so you don’t have to start your day rushing to be dressed & ready to go.

Whatever plans you have, you may have to Cherry Pick the ones you really want to do & try to factor in an afternoon nap or rest on the bed.

If you feel really, awful consider raising your dose for 3 Days but definitely to fly home.

I was away in March in the Caribbean & was so fatigued and below par that l only got off the Ship three times, l never took any of the tours we’d planned but I really didn’t want to increase the steroids again.

I can manage my life if l do things at my pace & l only get ‘Me’ out of the box for events.

I’m quite an extrovert by nature, love to entertain & tell a good story but that’s hard work & l can feel myself becoming more & more drained when l do this, it’s not my nature to be the quiet one & just listen but trying to be ‘Me’ all the time takes it out of me.

Pacing, Pacing, Pacing is My Mantra these days & l think it might need to be yours too until you find a level that keeps you without pain but able function at a steady pace.

I wrote a reply on this subject earlier this week, l’ll find it & Post it to you.

Enjoy the rest of your holiday as best you can but pace yourself.

Best Wishes

Mrs Nails 💅🏼

[Hidden in reply to Hidden]

This is paraphrased from an earlier reply re dental work but this part might be useful to you or explain to your husband how you feel.........

In very basic terms l think of my Pred like this 🥃 & it has to last me all day.

If l have anything that causes me ‘stress’ good or bad, physical or mental the Pred will be used up much quicker, therefore l’ll become tired, fatigued, irritable, all of the old aches & pains become apparent, it then takes me several days to recover.

I also take ‘Airport Cover’ the ‘stress’ of Airport Security l find overwhelming, although l do have it down to a fine art now!

Also if l know l’m going to be busy on a particular day, l keep the day before & after as an easier day.

This is just my way of looking at it 🥃 there is also a Post on the Spoons Theory which is well worth reading.

Hope you feel better soon.

Mrs N 💅🏼

[Mike1964]

Hi Suin. Thinking of you and hoping you're having a better day today. I started a post around fatigue last weekend and get some great feedback, scroll back and have a read. I think the biggest thing for me was acceptance. This whole accepting a new you bit is pants, I've always had loads of energy, I still want loads of energy, but somehow sadly this is it, AT THE MOMENT! you will improve, hang on in there.

[Suin555 in reply to Mike1964]

Hi Mike 1964! Thanks so much for your advice. I am having a better few days & I am definitely pacing myself more! I chilled out yesterday in our apartment all day & now today I feel I can go out for lunch, have a gentle stroll & enjoy Tuscany! I just still get frustrated with my lack of energy & I know I have to be more patient & accepting of my situation. Grazie Mille! 👏🤗🤓