A Question!

[Mariemcdo]

I was wondering if any of you lovely people out there could enlighten me regarding the chronic fatigue associated with PMR? Is it part of the disease or is it a consequence of the steroids? I can't seem to get a clear answer from my GP. In October I tapered down from 5 to 2mg per day over the month ( I know far to quick a reduction and I have learnt my lesson) the level of chronic fatigue that hit me was horrendous. I did not really suffer much increased pain but I did want to go to bed and never re-emerge! Also another member of our school staff has also got symptoms that sound like PMR and as is in terrible pain but does not appear to have fatigue, she is bravely managing without the steroids!

Thank you

[PMRpro Ambassador]

It all depends where you start! Almost all autoimmune illness is accompanied by fatigue. For some people pred causes fatigue - but not everyone.

And when you get to doses of about 5mg your body is having to start to produce the body's natural corticosteroid, cortisol, which it stops making at above about 8mg. Lact of cortisol leads to the fatigue of adrenal insufficiency. That is what hit you when you shot down by 3mg in a month! Your poor body!!!!

I wouldn't say brave - I had 5 years of PMR without pred and it was hell. Yes - the tale of "it lasts 2 years" is not what you'd call reliable. About a quarter are off pred in under 2 years - but seem to be at a higher risk of a relapse. About half take up to 4 to 6 years and the rest of us even longer, For 5% it lasts for the rest of their life. You can be in pain and disabled for a long time.

In PMR there is a lot of chronic inflammation going on - being on pred manages that and reduces the symptoms as a result. But choosing to be brave isn't necessarily a good thing - it leaves the inflammation to do damage to body tissues, increasing the risk of cardiovascular disease and some cancers. As well as making everyday life pretty unpleasant. I became almost housebound without my car - if I couldn't drive there and not have to walk far I couldn't go. I had no diagnosis so couldn't apply for a blue badge and eventually was stopped driving for several months for another (totally unjustified and incorrect) reason. That was when I sat down with my computer and eventaully worked out what the doctor couldn't: I had PMR, despite being relatively young (51 when it started) and having normal blood markers (up to 20% of patients do).

[Mariemcdo in reply to PMRpro]

Gosh 5 years of pain, no diagnosis and no medication it sounds horrendous. I will pass on the info to her, her GP is finding it very hard to come up with a diagnosis and she is in a lot of pain.

When I think back to my very beginning January 2016, I got the flu then I got tired. Went off on the usual school holidays in April and July but I really noticed a huge difference when I re-started the school term in September. Despite having had an 8 week break I was exhausted and it continued to get worse and worse..... December woke up one morning in dreadful pain, shoulders tops of arms, hamstrings and inside legs. Very lucky to have been diagnosed and on PREDS in two weeks! So I guess what I am saying is that the fatigue came first!

[PMRpro Ambassador in reply to Mariemcdo]

Most of that 5 years I had only to sit down in the afternoon and I was asleep - and I couldn't do things without becoming unreasonably tired. I had been fit and at the gym almost every day at the start. I had to change gyms to one with a pool - and continued daily morning aquafit. It was the only thing that let me be able to move. The first signs for me were being unable to do step class - I couldn't get up onto the step! I was the youngest in the class - the others were 70+. I went to keep the group going for them.

[powerwalk in reply to Mariemcdo]

yes fatigue has been a HUGE factor with me. As I 've said before - actually nauseating. I already had fibromyalgia - so when I went down several more levels of fatigue/pain I thought it was the fibro getting worse - but then all the other symptoms kicked in. Could barely walk at one stage cos my hips had almost seized up - then the arms started. So yes fatigue is a very big part of it. Maybe everyone differs - like everything else. Also the adrenals take a bit of a bttering with the pred - so kind of vicious circle.

[HeronNS]

I didn't experience fatigue until reaching 7 mg in my taper, despite PMR symptoms dating back more than a year before diagnosis and treatment. Since then fatigue has been with me to some extent, and I'm also considerably weaker and prone to injury from simple yet strenuous tasks, like snow shovelling or vacuuming.

I hope the school matron is aware of the possibility of GCA.

[Hollyseden in reply to HeronNS]

I also have the deadly fatigue. I see you mention vacuuming. I'm sure someone has put a ton of lead in mine. Can't believe how heavy it feels now. Need a sit down or lie down after I've used it 💪😨

[HeronNS in reply to Hollyseden]

As my husband's help is not reliable I've learned to vacuum only until the moment my arms start to hurt, and then I stop. There's no way I can do the whole house in one go any more (we have a small but cluttered house).

[Hollyseden in reply to HeronNS]

Yes HeronNS I'm a bit like that too. I have also completely given up vacuuming the stairs. Even before PMR arrived, my back used to ache doing the stairs, so now I just sweetly ask my hubby to do them.

[Judigardener in reply to Hollyseden]

If you can afford it buy a cordless Dyson. It haas transformed our lives. We knew the days of vacuuming a whole house were over. Now we charge it up, Whip it round the affected areas. Wouldn't be without it. Everything about it is wonderful-- and I am not on commission!!!

[RheaV in reply to Judigardener]

I just bought a cordless rechargeable Dyson stick vac. It is wonderful! So much easier to do stairs. Got it shortly after I was diagnosed with PMR--I'm certainly glad I have it now!

[Hidden in reply to RheaV]

Yes, a stick Vac is the answer, excellent exercise, and as my Son (56) says spread the use over both arms and the walking helps also. Then there is the technical brain part of emptying it ! (ouch)And then comes a bonus of a cup of tea offered by the Lady of the house! Can't be bad. John

Ps.

and to do it with Roomba music, well! just make sure the curtains are pulled PMRpro! - too much 'Strictly' , obviously .Still, it is Christmas coming And a Happy one to all.

[PMRpro Ambassador in reply to Hidden]

Er- "Strictly..." - what's that?

[Hidden in reply to PMRpro]

an English TV BBC 1 programme, on an all Dances competition which practically takes over public life in UK when it nears its climax. Flashing Bare Chests-male and long legs with wonderful costumes. Not for those suffering with PMR or GCA.-Can you get it on BBC i player? You like the Roomba ,If I may, can I ask for a TANGO!!!!! Best wishes for Christmas - you do sterling work for us all year, John

[PMRpro Ambassador in reply to Hidden]

Can't use iPlayer - it doesn't get a passport...

We do have FilmOn which allows us to watch UK terrestrial TV live and record a certain amount. I lied - I do know what Strictly is and on another PMRGCA forum there has been a "Strictly" thread. I'd rather pluck my eyes out...

Thank you xxxx

[Hidden in reply to PMRpro]

O just wondered if you had used filmon recently? I used to use a lot but last time it looked like they had sold up and were asking for cash. If it ain't free I ain't using it.

[PMRpro Ambassador in reply to Hollyseden]

I now LOVE vacuuming! Roomba rules! No weight lifting required.

And interestingly, after several days using it - the dust in the rest of the room is less.

[Hidden in reply to PMRpro]

My ex neighbour used to vacuum everyday and suggested my house would not be so dusty uf I vacuumed more regularly. I presume the roomba picks up that slack. I may tell family to give me all my birthday presents and Xmas presents in lump sum to get roomba. Or sell a slightly worn kidney.

[PMRpro Ambassador in reply to Hidden]

Hmmm - not sure mine are surplus to requirements just yet!!!

[HeronNS in reply to Hidden]

Poopadoop, someone was posting recently about a Roomba knockoff which worked brilliantly for her and wasn't nearly as expensive. I wouldn't bet on it but I think it might have been an ILIFE.

Also this: heavy.com/tech/2015/02/best...

[PMRpro Ambassador in reply to HeronNS]

Mine wasn't particularly expensive - it is the bottom of the range, non-programmable blah blah blah. But it does what iI need!

[Hidden in reply to HeronNS]

Thanks. I will explore this possibility. Anything better than pushing a vacuum. I have cordless Dyson which is lighter but still vacuuming.

[Peggles]

Unfortunately my fatigue has gone, which means I'll overdo things on day one, but pay for it on day two!

[Hollyseden in reply to Peggles]

Noooo! If you know you will pay for it on day 2, don't do it. Take that advice re pacing or even better "shrug it off' 😊 and don't it at all

[Hidden]

Hi, the chronic fatigue may well be a result of the disease, made worse from the,steroids, as qthey slowly deplete,calcium & vitamin B6 & D3, depending on how long you've been on them, also restlessness & sleep disorders etc. Whilst on steroids you will have regular blood tests to check these,levels as well as inflammation in your blood, so they'll put you on supplements when / if they do drop. But the PMR also affects us this way during flare ups more so, or when stress levels rise. Wishing you a manageable Christmas.

[sondya]

Some fatigue yes, but lack of motivation was really the problem. Down to 5mg and it's emerging. (This is for GCA.) Play sport twice a week, back to competitive play (petanque) and none of the consequences the next day. But, my grand-daughter vacuums the house and the lawns are mowed by a contractor. Just leaves things I like doing for myself.