Seems I reduced pred a bit too speedily for me, so having read lots of great supportive info on here (thank you!!) I went back up to 6mg and decided not to attempt reducing til xmas was over. Ill tell my GP mid month when i finally see them.
However....or but....the fatigue is NOT improving. Is it my adrenals being resistant? Have i got terminally unfit or just beome an idle git? Somedays I cant be bothered getting out of bed til lunchtime!! Others I cant stay awake after lunch.... It wasn't like this at the beginning of PMR......though that coincided with my mothers death, so I may just not remember too accurately .
My muscles also feel week, even when not sore. Do i need to exercise more to stop them wasting away? Ive started a gentle Pilates class recently, but still have to opt out of some of it. And is it me or is it common for balance to deteriorate?
I work two days a week in a primary school..on my feet almost all day, and right now dont quite know how Im going to cope when term starts again. I also live alone, which makes pacing both easier and more of a challenge- noones going to know how long i nap on the sofa or want their ironing done, but nor are they going to cut the grass or cook dinner!
Anyone got any thoughts ??? Please....
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Fergyfish
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You have never told us how long you have had PMR - only that you started at a dose that simply wasn't enough to clear things out (so to speak) and so you are hovering at your lowest dose already. I think you need to go back to your previous post and think about what was said there.
And please tell us more on your profile about your PMR history - otherwise we can't offer appropriate advice.
It is not at all uncommon to feel fatigued when at 7 mg and below, yet have been fine and energetic when first on pred. This is to do with the adrenals having to start producing cortisol again. I am one of those people and I can tell you that eventually it does get better but you have to pace yourself very carefully. Provided your actual PMR symptoms are under control it is best to carry on tapering, but very very slowly (yes "nearly stop") but it sounds like you might not have got PMR completely under control so more likely you need to stay at a slightly higher dose for longer. It's all very well to start a patient off at a really low dose and hope it's enough, but in retrospect we often find that having more than we actually need for a few weeks (like one month or so) before starting a taper in fact results in more effective continued control of the symptoms and in the end probably a lower total intake of pred.
It's common for Fatigue to hit more as you are on doses close to when the steroids need to have their work taken over again by the Adrenals.
It's also common to have a lot more Fatigue and Low Mood during Winter and the Festive Season when Cold Weather , Dark days , and all that extra activity ( or Positive Stress ) of socialising in the festive season or doing extra little jobs add up to tire you out.
Balance and Muscle strength , Endurance and Coordination can all take a knock as you progress with a Condition like PMR that may have caused you to need to exercise less in certain ways.
Doing little bits of activity through the day balanced with good rest and relaxation can help get you over the edge of a patch of Fatigue. Unlike with Extreme tiredness when sleep and rest is the most important Self Care , Fatigue does benefit from even just a little potter around the house and a bit of stretching through the day as well as good rest. Although until you are past the worst each effort feels like swimming through cold gravy.
Building yourself up in exercises classes or any exercise activity very slowly and with gradual increases within your comfort zone is important to prevent rebound pain or Fatigue that then stops you doing some exercise consistently every day.
Never pushing yourself beyond your fitness level is key , No Pain , No Gain is not the Mantra for Chronic Illness or any Healthy Exercise regime really.
My physio says less is definitely more and speeds up your eventual recovery in activity and muscle strength.
Sitting out of certain exercises that can trigger old symptoms or affect particular weakened joints is the best thing to do . Nobody should try a full or even half a class of a activity they have not done before ( or not done for some time ) as this can cause a pain reaction and put you off doing it again or improving at it.
Warming up before and cooling down in a warm shower slowly rotating your joints in the water helps your recovery. You should also always drink alot of water before , during and after exercise to help reduce inflammation and help prevent dizziness and some balance issues.
Things will improve , Fatigue is hard though and it takes patience to get past it.
It was suggested I swim.for 5 mins three times a week...but the practicalities of that are beyond me! But i do understand what youre saying about interspersing activity and rest and not pushing hard.
Id not thought about hydration....suspect im not really drinking enough.....so thats something easy that I can work on.
Being patient is a bit tougher! However, xmas has gone and with it my sons. Its the first time Ive had all three home together in 5 years. So yes, I did push myself because it mattered and its also been quite emotional ( we scattered my mums ashes and I dont know when next Ill see my eldest who has decided to stay permanently in the US) . Maybe now that's all done Ill be better at being sensible about pacing myself.
Its really reassuring and comforting to hear from you lovely people. Thank you!
That Stress both Positive and Negative has been at work for weeks , and even if you try to rest and pace yourself , a little stress ( which is basically just any activity that your body or brain isn't used to doing each day ) every day over a long time can bring in the same Fatigue when the business finishes as overdoing it on one day. You've probably been stiffening up and trying to keep a hold of your Pain and Tiredness for weeks and with Steroids instead of your adrenals doing the job you haven't been getting that extra injection of energy all people need to cope to stop a slump after Emotional and Physical Changes.
Hopefully you can have a week to just build your strength again now with rest and light activity and a bit of time to just relax , reflect and be kind to yourself . You deserve it after all the hard work.
5 mins of swimming 3 X a week!!!!
I don't know anybody that would benefit from that or be able to do it practically unless they owned a pool. The amount of spoons you would use just preparing to swim then getting changed again would make that pretty pointless.
Going to a warm pool once a week if you enjoy it and doing some light walking in the shallow end and joint rotations and then eventually add in 5- 10 mins ( over half an hour ) of gentle swimming may be something helpful.
Just a short stroll or some gentle stretches at home is a good start and can slowly wake you from Fatigue.
It's always good to start small , even below your real limits and gradually work your way up a tiny amount every few days , only adding in a few more minutes or reps of exercise when you feel really energetic but not too much on each increase. Pain or Muscle Fatigue isn't a positive thing it just shows you worked your muscles too much in a way that did not benefit you. Your slower progress doing Pilates follows that simple rule , if it feels like too much the next session you can do less next time and work up slowly again.
Who suggested SWIMMING for 5mins 3x week? Must have been someone who has no concept of how we live with chronic illness! I can't even screw up the courage to start on the logistics of that process once a week in my current situation! I did use the gym pool every day Mon-Fri when I was in the 5 year no treatment phase but it didn't cost me more, I just walked in and the aquafit classes were always in the morning so I got into a swimsuit rather than dressing and showered at the pool to start the day. But I was 10 years younger too.
I was at least only less than 10mins from my pool - but when I wasn't allowed to drive (incorrectly and for something else) I simply couldn't get there. Here the only available pool is a all-singing all dancing tourist pool - muchos deniros for a 5min spin!
Doesn't "believe" in PMR eh? Does he not know you don't have to believe in what you can experience - and I hope one day he does, 'cos I'm a horrible person when it comes to that sort of non-believer ...
Having looked at your profile, no wonder you are having issues - would say that doctor didn’t start you on a high enough dose to get the inflammation under control initially.
Balance is an issue for many people - so try Tai Chi or Nordic walking to help. I do Pilates, and find it brilliant, so can I ask what in particular you have problems with?
How long were you on the initial trial?
If you started at 5mg and the highest you have been is 7mg then your adrenals should have still been functioning (if only just a little), so not sure if the fatigue can be attributed totally to them - more likely the illness itself.
Personally I don’t think you’re on enough Pred to control symptoms, so perhaps you should discuss this with GP at next appointment.
As for pacing ....it’s a necessity, no matter how challenging 😳
Im beginning to think im maybe not on enough pred too...sadly. I was so pleased I didnt seem to need much.
The initial pred trial was only over two weeks..going down in 5,mg steps from 20mg to 0.
Problems at pilates are sometimes balance, but last week , lying on the floor with arms above my head, I simply couldnt lift them back to vertical...they wouldnt go! In general I seem to be staggering a bit more....with no alcohol involved!!
Im seeing my GP soonish now, so will see what he has to say, but I rather get the impression he'll not want to go against what the rheumy has told me to do.
Most definitely not enough Pred. Even the initial fortnight’s trial would not have been enough to get the inflammation sufficiently under control. You need to be on at least 15mg for 3-4 weeks.
Arm issues are most certainly PMR.
Please impress upon your GP that at the moment things aren’t working, so something needs to change!
Just on Blearyeyed’s point re drinking water, quite a few times I have felt listless and a little headachy, have downed a big drink of water and 15-20minutes later felt much better and headache gone. It happened yesterday and after drinking almost a litre of water felt much better. I am never aware of being thirsty at these times but on reflection realised I hadn’t had much fluid. It is probably not the cause of your problems but worth remembering. I try to remember to have a drink whenever I’m in the kitchen but often forget when I’m busy(sometimes busy means resting or reading 😊). With temps sometimes at 40+ here I should be more mindful re hydration. Other than that heed the advice of the very wise and knowledgeable people here. All the best Marea
Wow I'm amazed you've managed as well as you have, particularly since you were started on far too low a dose initially, work two days a week in a primary school and live alone. Just the thought of all that makes my body ache!😮
I fear as others have already said that you really need to be on a higher dose for a few weeks until all is under control (15 mg is the lowest recommended and some need more) and then taper much more slowly than you have in the past.
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Still confused about fatigue
Misdiagnosis and confused
Confused carer!
Im off Leflunomide:
