Good Morning All
Has anyone figured out why we get this devastating fatigue or have a remedy for it? I have researched it a lot but can't find anything on just the fatigue aspect of this miserable malady.
Rest really doesn't help at all. I took three naps yesterday and simply couldn't shake it.
I have tried Oat Straw and DRibose and it helps a tiny bit. However, when it is really bad all I do is wait it out.
Any suggestions would be wonderful
Thanks
The fatigue is a component of the autoimmune part of PMR - and the definition is tiredness that is not relieved by sleep or rest. The symptoms we call PMR are not the disease - that is an autoimmune disorder that makes the immune system unable to recognise our body as "self" and so it attacks body tissues as if they were foreign invaders. That is what makes us feel flu-ey and fatigued and it is not affected in any way by the pred, it continues chugging away in the background as long as the autoimmune disorder is active. It is a common factor in almost all autoimmune disease but at least PMR does eventually go into remission for 95% of patients!
The fatigue must be managed by pacing as well as resting appropriately and this is a link to a post with more links that provide useful info and explanations relevant to living with autoimmune disorders:
As has been said pacing yourself is the key Start by setting small goals which are easy and completed in 10-15 mins then rest with a cuppa and read knit or sew. It is very frustrating but we have to learn to live with it. Best wishes Rae
If you get a bug, your body gets knackered trying to fight it. PMR is just the same except it's putting all our body's energy into fighting ourselves so double whammy, 1 the effort of fighting 2 the effort of being attacked. I think Pmr is a fighting warrior with a bucket on his head! Can't see what he's hitting, bit like Monty python film
Aw that’s a great discription of PMR . I can visualise the bucket head warriors lashing out!!
Love that!
Hi Lin
I find l wake up some days & l almost know instinctively that it’s not going to be a great day 😕 other days I’m relatively ‘fine’ then bang from nowhere Fatigue!........
I try to take it easy, l find laying on the bed more restful than just sitting in a chair, somehow my body feels more supported.
This last two months I’ve been packing the house up to move & surprised myself at what l’ve achieved even on a bad day fatigue wise, do a bit, rest a bit.
Hope you can pace yourself & find a way of dealing with it.
Take Care
Best Wishes
Mrs N 💅🏼
Thanks for the reply. I agree, for me it is either lay down or fall down. I don't think I could pack up my house now. They would have to move it out around me. Just so little energy.
I don't know what is worse the fatigue or the pain. I don't do a whole lot to pace.
We'll see what tomorrow brings.
Take Care
Lin
I'm a newbie but through other health issues know not to look too far ahead in planning what you can or can't do. My husband asked how I'm going to cope with something big coming up. Answer.... I have absolutely no idea what I'm capable of two hours from now so ask me 10 minutes before the event, I might have an idea then 🤣
Planning any kind of life is almost impossible. I hate to cancel when I make a plan, so it is hard for me to step up and say I will do anything in the future.
I've become really creative in my wording so I don't over promise, my favourite saying is becoming 'that's the plan at this stage, I'll let you know if it changes'. That way people understand my intentions but also understand that things aren't predictable. It seems to work
I always say l’ll try, have changed to eating out at Lunch Time & we have Coffee Club at 11am in M&S!
Don’t try to do more than one planned thing a day then see how you go with anything else! xx
YES! It is so frustrating, not knowing how you'll feel later today or tomorrow... Trying to make plans is a nightmare!
My family know to give me notice. I try and rest and ensure my blood sugar etc are optimal and all the painkillers tuned to the max during the 5days leading up to family weekend. We do a check the day before (have cancelled twice in the past year). I then get there (York's to Somerset) and have a stretch then to bed as early as possible..I come back after the weekend and flop into bed for 3days minimum..often a week.I have used this strategy since being DX with fibromylgia. It's painful and tiring and I am more irritable than I would be if I was pain free. I got back from last weekend on Monday afternoon and apart from getting food and throwing the dog a ball in the garden I stayed in bed until yesterday at 12 when I met a friend. I am two years so the fatigue isn't as bad as the first 18mths or so. If I can't do something I thank the friend and say I can't make it this time but don't stop asking.
Hi Lin
The plan was we’d have a full packing service & if necessary I’d leave the day before moving & stop over in an hotel, l had my options covered!
I’d always planned to pack my China, Crystal & my own personal things, then as the chain became more & more delayed l just packed a box or two when l felt like it & now it’s almost done!
The issues have run on & we now find ourselves heading to a rented town house, so it will involve two moves but on the positive side we can do (that being the Royal We) any painting & arrange for carpets etc to be laid!
Everything works out as it’s suppose to in the end & at least we’ll be in Telford for the Arrival of The First Grand Baby! 🤱🏻
I’ve had diagnosed PMR since 2012 & breast cancer 3 years ago so l was determined to make this happen!
There is a light at the end of the tunnel & now l know it’s not an oncoming train, well at least l hope it isn’t!
But l do pace myself & stop or change activity if l can’t manage it!
Best Wishes
Mrs N 💅🏼
Soon to Be Glam-Ma 🤱🏻
hi lin, without a doubt, fatigue is a challenge .
most of our lives, we have bustled about, multi-tasking, and Getting Things Done!! suddenly, we are challenged to accomplish one thing a day, and even that might push us beyond our abilities.
fatigue, in my experience, strikes with a vengence as pred tapering begins in earnest. i found it most problematic between levels of 10 and 7 mg of prednisone, with each fatigue event lasting for a week or so, before easing.
i want to reassure you that you will progress to a more stable stage in your recovery, where much of your energy will return and you will be able to function closer to normal.
PNR does teach us patience (mostly with ourselves and our self-expectations).
kind regards, Jerri
dx. PMR 2013, currently 6-7 mg pred, post flare.
Thank you for the reply. I have had this awful fatigue since day one. 10/2016
It just keeps getting worse flare or not.
I was at 6mg doing ok for about a month and then what a beaut of a flare. My 4th flare since beginning this. Not always because of coming down mg of pred.
Had to go up to 15 and now finally down to 9 &1/2 and the fatigue keeps trucking along.
I get a day or two that is functional and then get to where I can hardly get off the chair.
I try not to do too much on the functional days knowing I will feel bad afterwards.
This is soooo crazy. Makes me feel like I'm losing my mind. Starting to wonder if something else is going on but too tired to look into it.
Thanks for listening. It is a bad day, can you tell. I want my positive patient self back.
i do hear what you are saying...it is overwhelming...and none of the literature adequately (if at all) addresses what fatigue really is to us.
until last winter...after several severe stressors came and went...I was at 2 mg pred...my pain and (dare I say) dis-ability finally got so bad that I kicked back up to 10 mg pred. what I found was that the 10 mg really curbed most of the symptoms. i told my rheumy what I was doing...and she agreed...i needed more pred.
so here I am, nearly 5 years into it, and happily using 6-7 mg prednisone, as I just relax into some peaceful co-existence with PMR.
the first 3 years beat me up, emotionally, mentally and physically. there is really nothing that prepares us for this experience, and the docs have no clue...unless they have experienced it first hand.
now, nearing my 5 year mark, my anxiety about taking prednisone has eased, and I have no clue how much longer I will have this dis-ease.
pMRpro has been living it nearly 10 years, and hasnt said she has an end in sight...so here we are... lets hold hands and support each other as we continue this blindfolded journey.
kind regards, Jerri
14 years now Jerri - doesn't time fly when you are enjoying yourself!
yes, what you say🙃
I too have flares that don't relate to reduction.
I wonder if your doctor would do a synacthen test for adrenal function?
I will need to ask him as this just can't continue. If the test does show something what are they able to do about it?
Not a lot it has to be said - enough pred as supplement and since the fatigue was there at higher doses it does cast a bit of doubt on it.
But if the fatigue is this bad - I think someone needs to do a bit more investigation. One autoimmune disease is often joined by another and in that case might require different management.
It's talking that I find hard. Normally fairly articulate and sociable the PMR has made me want to withdraw. I can't find the words, can't find the energy to relate to others .It's a crushing and disabling tiredness which some days I can hide but which overwhelms me on other days.I wish someone would invent a machine enabling others to plug into how I feel, just for a moment. Then they would understand.
Funny you should say that about a machine, I was thinking the other day if only people had a way of really experiencing this awful thing for just one day. Not that I wish this on anyone, but just one really bad day, ok not a day how about 1 hour.
I have a very supportive husband, but even then he just doesn't get it sometimes.
There is a suit:
age-simulation-suit.com/ger...
For the first time recently I think I really did experience what the suit would do. Of course it won't give one the pain of PMR. But I was walking with my son and realized I could not keep up, although this isn't usually a problem. If I need to go faster I just shift into another gear and I'm good to go. This time it felt like I was walking through molasses and there was nothing I could do to step up my pace. Quite disconcerting.
You are so correct, nobody without this disease gets it. I am unmarried so I don't have a spouse, but none of my friends really get it either. Having a hidden disease is a very lonely place to be. For me, as I have no choice, I just have to bear up from day to day and hope that one day before I pass from this earth I will for a while be free of this condition. My heartfelt best wishes to all fellow suffers belonging to this group.
Again relating to experiences with a few other conditions, it sounds like you are in danger of disconnecting from others, which can lead to a type of depression that comes when we stop being part of things. I'm a raging extrovert and have had to explore my quiet side. I try and force myself to do things and be around people when I'm having a quiet time, friends get very suspicious! It can feel like a really big mountain climb but I know it's vital for my mental health.
YES! My words are all jumbled up!!!! I'm okay writing, but in a face to face conversation I get distracted and lose the gist of the discussion! I like your idea of a machine that would let others "plug in" and feel what this feels like!!!!!
What works for me is a strict anti-inflammatory diet, a few supplements, rest, and pacing out my daily routines.
Oddly walking in the fresh air seems to energise me. I never feel like it but it gets better as I go along. I sleep every day now at least once. This has been the worst at my present dose of 7 mgs.
Do you mean the tiredness is getting worse even though you are still on the same dose?
If you mean me, yes more tired, but the UTI is dragging me down. I’ve had a raft of bloods taken, so we’ll see.
Just wondered if the adrenal insufficiency was starting to catch up - it doesn't always happen overnight. But yes, an ignored UTI will do it too.
I think it’s a bit of both. Thanks for your concern. My GP just goes off on unrelated tangents, no joined up thinking at all, each symptom regarded in isolation.
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