Debilitating fatigue : Hi lovely people. I’m... - PMRGCAuk

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Debilitating fatigue

Greensleeves profile image
Greensleeves

Hi lovely people. I’m currently taking 8.5mg pred , but have overwhelming fatigue and some aching shoulders and tops of legs .

I can cope with the aches more so than the tiredness.

It’s an effort to even get dressed, I can feel it gradually morphing into low mood.

I look at people doing every day things in amazement.

Have recently had a great deal of personal stress , that isn’t going away .

Going for walks etc , and I pay for it big time.

Should I sit it out , or increase pred ?

All suggestions greatly appreciated. xx

91 Replies

Have you been checked for possible causes of fatigue? I complained to my doctor at some point (lower pred dose than you're at) and she ran a battery of tests but found nothing other than my iron was low again. I don't remember everything that was checked, think it included electrolytes, thyroid. If it's sluggish adrenals I'm afraid it's a waiting game.

Greensleeves profile image
Greensleeves in reply to HeronNS

Hi Heron ,

I haven’t contacted my GP , they’re very blasé re: PMR, happy to let me get on with it , and more so the past 14 months. I think it will be the waiting game , and I have to accept that . Thank you for your help x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As you’ve had a lot of stress - does sound more like a flare, so an increase might be sensible. Usual recommendation is add 5mg to dose you last felt okay for5-10 days then (provided that’s worked) down to just above dose you’re on now.

You may also be getting into the range when Adrenals need to begin to spark - do have a read of these posts-

Flares

healthunlocked.com/pmrgcauk...

Adrenals

healthunlocked.com/pmrgcauk...

And, as much as possible, try and reduce the stress! Know it’s not always easy .,,

Hi DS , life was more manageable at 10mg , but still tiring .

I think I’ll increase to 15 mg and maybe drop down to 11mg if it helps , I haven’t read those posts yet on flares and adrenals , but I will do now .

Stress is relentless, I feel a rush of adrenaline coming from somewhere , when there’s yet another crisis, and then a very drained body .

Thank you for your help x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Greensleeves

Good plan. ... and stress is a real killer when you have PMR or GCA - the Adrenals post may help explain a bit more.

It has helped explain it very well. Thanks so much.

I was so well informed but have forgotten everything.

When we’re stressed we focus on others and forget our own illnesses . Thank you and take care xx

Sounds very much like a flare and my Adrenals must have reduced to nothing. Thanks so much DL xx

PMRpro profile image
PMRproAmbassador

I was like that after the second jab and the stress part has been there for a long time and also isn't going to go away - I went back up a couple of mg. More might be even better but I don't want to go above 15mg

Greensleeves profile image
Greensleeves in reply to PMRpro

Hi PMRpro ,

I had the second jab last week, but the fatigue was already there . All went okay apart from a bad head , that’s gone now .

I’m sorry for the stress you’re going through, this is the problem when you know you need the energy from somewhere to do whatever is necessary and keep going.

I understand you not wanting to go above 15mg too , maybe a couple of days would give you a boost .

I’m going to increase to 15mg for a few days, I don’t have any choice .

I’m not tired in a sleepy way, it’s physical exhaustion .

I’ll read the links DL has kindly posted .

Thank you for your help and advice . Look after yourself xx

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

Oh yes - fatigue was there because of the whole Covid thing too but it was not overwhelming until the jab. It is improving now though.

Greensleeves profile image
Greensleeves in reply to PMRpro

Glad it’s improving. x

That overwhelming fatigue is so difficult to explain to anyone except those that have/are suffering from it!....

Like the time l ‘collapsed’ into a beautiful chair in a ‘Bedroom Setting’ in a Large Department Store, l simply could not move.....

I suspect you are at the dose where you need input from your adrenal glands, some people get to 7mg before it hits them but it can be from about 10mg-> As DL suggests go up by 5mg for 3-5days then maybe try 10mg & start the Slow Taper again.....

Very disheartening but you just can’t beat the fatigue, it’s horrible!

Take Care

MrsN

Hi Mrs N ,

you’re right it is difficult to explain, and I completely understand you collapsing into a beautiful chair and feeling unable to move .

Going upstairs is like climbing a mountain, I feel like asking people to please pick me up and carry me.

But there’s no one to help and nothing to help , apart from an increase in the steroid dose .

I think it’s a combination of stress causing a Flare and my Adrenals can’t cope with it.

Thank you and take care xx

Stress is Our Enemy unfortunately 😔

Yes it is , some stress we can’t avoid , but trying to be assertive and prioritise. Take care xx

Kendrew profile image
Kendrew in reply to Greensleeves

I remember needing to dry my hair with the hair dryer and being in tears because I literally didn't have the strength to hold up both the hairdryer and hairbrush to blow dry my hair. Like Mrs. N said...no one understands that immense fatigue unless they've experienced it for themselves.

PMRpro profile image
PMRproAmbassador in reply to Kendrew

I remember it well!!!! Propping my elbow against the wall to hold the dryer ...

Snerd profile image
Snerd in reply to PMRpro

Yes!

Greensleeves profile image
Greensleeves in reply to Kendrew

It’s overwhelming, debilitating fatigue Kendrew . Just awful isn’t it . Everything is exhausting. xx

Kendrew profile image
Kendrew in reply to Greensleeves

I always feel I should be capable of doing these simple tasks and always surprised when I can't!!

Greensleeves profile image
Greensleeves in reply to Kendrew

I know Kendrew, I really am floored at the moment. I know it’s stress related as each phone call or event makes me tremble, there isn’t the adrenaline to go with it.

Take care xx

Kendrew profile image
Kendrew in reply to Greensleeves

Going to PM you

In my first years of PMR, I found episodes of fatigue were frequent and unwanted guests in my life. I learned to identify what they are, when they started, instead of trying to push through them.

What I learned to do...schedule regular rest stops, lie down on bed, relax, let it be. I set an alarm for any time from 15 minutes to 1 hour, whichever I could spare. When the alarm sounded, I got up. Sometimes it was once a day, sometimes 3-4 times a day.

The fatigue episodes are part of early years of the disorder, and they are real experiences. If you can enlist help of spouse, etc., to support your need to take rest breaks, it can help ease feelings of guilt we all have experienced when we have been unwell and unable to perform As others might expect.

Kind regards, Jerri

PMR diagnosed 2013

Hi Jerri

Thank you for your advice.

Unfortunately we do feel guilty. Especially when others need us and the hospitals and service providers for loved ones expect you to be at their beck and call .

I’ll have to increase my dose otherwise I can’t do it.

Best wishes

Longtimer profile image
Longtimer in reply to Purplecrow

I beg to differ about the "early years" of fatigue....I have had PMR ten years and it`s still the biggest problem to me....it has kept me housebound on and off all these years.....sometimes very severe....I have had a Pet scan recently .....maybe I`ll get some answers soon fingers crossed....

Fingers crossed for you . I’ve had PMR since 2012 , I’ve been struggling all year, stress is always in the background.

Every new extra stressful thing drains the life out of me .

I’m sorry it’s kept you housebound off and on over the years.

I understand that . Let us know if your PET scan results reveal any answers .

Thank you, will do....

I do hear your issue. My suggestion is that a 2-3 mg dose increase might help you deal with your obligations. We need to live our lives in spite of PMR, and if a couple mg. Increase of pred helps...so be it...

Thank you , take care.

Hi Greensleeves your condition seems to mirror my experience. Not recommended but I chose to plough on tapering I have been off the steroids for 7 weeks now I have a few pains in the morning but they reduce during the day. I might have a flare up at some point but for now things are going well good luck

Thank you and well done Bill , I hope you don’t flare and continue to be steroid free , you’re pushing through.

I wish I could do that but have caring duties and can barely look after myself let alone others at present.

Best wishes and good luck .

I am feeling that overwhelming exhaustion too. It’s so frustrating, we are on holiday in Yorkshire and so far have done very little as I have no energy . I think the stress of packing and the journey here have emptied me as I didn’t feel this bad at home. I think an increase always helps Greensleeves but I m not able to do this now on hydrocortisone. Good luck , sending hugs xxx

Greensleeves profile image
Greensleeves in reply to York54

Hi York , oh what a shame, I wish the holiday was energising for you but it’s done the opposite. I would definitely agree the packing , organising and journey are the cause for your fatigue.

I took 15mg of pred at 2am , but I’m still like a useless rag doll . Hopefully it will kick in later .

I don’t know how the hydrocortisone works , I believe they prescribe it for Addison’s.

If you still feel exhausted when you get back it may be worth asking what you’re supposed to do when you’ve used up your Cortisol .

I hope after a couple of days resting you get some energy .

Big hugs to you xx

York54 profile image
York54 in reply to Greensleeves

I have a cortisol test booked for next Monday. X

Overwhelming fatigue! It is so terrible.. The word fatigue implies tiredness...this is so much more. My GP did a full blood check...I have a BP monitor at home because the collapse in energy is often accompanied by dizziness. Everything is tickety boo...except me! I am on 5mg (can't get lower) and so the guess is that I have sluggish adrenals. Walked 50 meters two days ago...collapse. Did some serious cooking the day before...collapse. My son saw me slump yesterday (I try to slump in private)...he was a bit shocked and wanted to know what was happening...I explained that if there was a bomb warning (we are living in Israel in the midst of tragic events) I couldn't move from the chair I had collapsed into by the window.

I am so reassured by the wonderful people on this site that this fatigue is: a) normal b) likely to pass.

And yes it could easily tip into depression...and I say that even though I am a very cheery personality.

Increasing your steroid dose can help and it sounds like you might need an increase to cope with life's current difficulties. PMR/GCA is one hell of a journey...hang on in there...we will get through it.

Hi , what you’re describing is so on point, I do believe it’s the adrenals plus a flare .

I was able to get down to 3mg last year , but I was literally dragging myself around .

We naturally try and hide how we are feeling, don’t want to be seen as moaning malingerers .

My natural personality is also quite jovial , but this is taking its toll .

I have increased my dose , I have to be able to carry on .

Stay safe and well, those horrendous conditions and tragic happenings surrounding you must be most upsetting and frightening.

Sending you hugs xx

Thank you for your reply.I so appreciate your words...the news here is so deeply saddening.

Let's hope for better times...for all of us.

You’re so welcome, I feel such a ridiculous complainer , when you’re living through that .

xx ❤️

thank you so much. Do read Gail10US below. She has some wise words for us.

When you feel the mood shift downwards and/or brain fog, along with the increased fatigue, I wouldn't hesitate to go up even just 1 mg. Even that slight increase has had dramatic effects for me. Unfortunately, I didn't take my own advice this past winter and suffered with extreme fatigue for a few months because I had finally gotten down to 3 mg and was determined not to go up again! Big mistake. I finally relented and went up to 5 mg and was able to come back down to 3 mg quite quickly ( 6 weeks). Try going up 1 mg at a time - I learned the hard way there is nothing to lose by a small increase in dose ... and much more to lose by not trying that. I had done that several times in the past with success, but my Rhumey had brainwashed me so much about "getting off Prednisone" ( even though I am below 5 mg), that this last time I felt like I was "failing" if I went back up again. I switched doctors :)

Treat the symptoms, and thank God for steroids! I can't imagine how people must have suffered before there was treatment.

In addition to the steroids, it really helps to have a place where others understand what we experience with PMR. As others have mentioned, the fatigue can be the hardest part to deal with over the longterm. I don't know anyone else with PMR - but thanks to this site, we are not alone :)

You are so right! A little more pred might help when one is drowning in fatigue. I have obstinately tried to avoid taking more...but I need to be treating the symptoms. I suppose I feel I have to live through the fatigue in the attempt to wake up my adrenals but it can be so unrelenting. A short respite could help. Many many thanks for your post.

I’m so thankful for this group Gail , people understand and are living with it themselves.

I’m glad you switched doctors, and cannot imagine how people managed without steroids years ago. They must have suffered terribly, it’s unbearable to even think about it . They used to talk about “rheumatism” years ago. I remember as a child fleetingly thinking it was the same as arthritis.

None of us want to increase steroids or be on higher doses , but if it’s all we’ve got then I’m happier to take them , rather than adding other medications .

I hope you’re feeling less fatigued now , at least you know what works for you.

Take care

York54 profile image
York54 in reply to Gail10US

I always increased my pred in the past but the hydrocortisone works differently I think.

It's now five years I'm being treated for PMR and I'm down to 9 mg. I too am finding the fatigue to be overwhelming and discouraging. What's most challenging is waking up with the fatigue after sleeping for 6-7 hours. You'd think I would wake up feeling better but I rarely wake up feeling refreshed and invigorated like the "good old days". Therefore, each day starts off on the wrong foot which makes it difficult to feel motivated and get much done. Sad way to "live" when all you hear is how you should make the most of each day. Wishing everyone peace and better health !

PMRpro profile image
PMRproAmbassador in reply to rocketman42

When do you take your pred? You are so right though - I'd take a bit of pain to have more energy.

rocketman42 profile image
rocketman42 in reply to PMRpro

As a guy who played football in high school and college and who worked out in the gym 5 days a week and ran half marathons up until PMR hit, it is a hard pill to swallow. I take my prednisone when I usually wake up around 4:30 am.

PMRpro profile image
PMRproAmbassador in reply to rocketman42

I wonder if taking it earlier might give a bit of early morning boost since your adrenal function isn't ...

Longtimer profile image
Longtimer in reply to PMRpro

I have always said there are things that can be taken to help pain....but not fatigue....maybe with long covid they will come up with something....but I won't hold my breath....

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Quite - I'm hoping they might work out what causes it at least but like you - no breath-holding!

Greensleeves profile image
Greensleeves in reply to PMRpro

Many people are using antihistamines for Long Covid, and comparing it with M.E and Chronic Fatigue. I don’t understand how this works. Yes for dampening the immune system, but not the fatigue .

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

I use antihistamines for other things - not all the time - but I can't say I'd noticed it helps the fatigue! I wish ...

Greensleeves profile image
Greensleeves in reply to PMRpro

They make me tired , so I’m not taking them , the ONLY good thing about the U.K. weather at present is it’s dampening the pollen a little. Wish there was an easy answer for the fatigue. I think it’s the hardest thing to deal with re: PMR. xx

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

Me too - just had a meeting about pain/stiffness/limitations in PMR - and you cannot separate them out really can you? Everything becomes such an effort but I couldn't really say what is the worst bit. Not really pain, I don't allow that to get out of hand so what I experience is short-lived - but unpredictability is a problem.

I use cheap as chips loratidine - doesn't make me sleepy

Greensleeves profile image
Greensleeves in reply to PMRpro

I’ve tried all the various antihistamines , Loratidine and Fexofenadine are the only ones that work , but do cause drowsiness.

Everything is an effort, limitations and fatigue are the worst personally, although I’m forgetting the severe pain and stiffness at the start.

I’m forever just getting off a chair and saying “ouch ,oh my goodness”.

The unpredictability of it all is a huge problem.

Take care xx

Wishing you well, you’re right waking up feeling exhausted is a dreadful way to start the day .

We certainly aren’t making the most of every precious day , but it’s not for the want of trying.

I’m taking my dose in the early hours but it’s not helping anymore, it did initially. The last thing we want to do is increase the dose but what else can you do .

Take care

Hi Greensleeves, so sorry to hear about this awful fatigue. I was wondering whether you,like me, also have thyroid problems. If the thyroid medication is not being absorbed properly, could this be another cause of fatigue?

Greensleeves profile image
Greensleeves in reply to humlies

Hi Humlies ,

I haven’t seen my GP for well over a year . My thyroid was checked years ago, 18 months after I started PMR. I’m long overdue an MOT , and could have started with thyroid problems.

I had lots of blood tests in January but they weren’t for anything specific.

I’ll bear this in mind when I eventually get to see the GP .

Thank you for your advice. Take care

Hi Greensleeves, I have been feeling exactly the same! Currently on 5mg for PMR and feeling like I should be reducing dose further but at the same time I am absolutely drained!!

Interesting about the Thyroid comment, I agree. I would ask to get that checked as I have under active Thyroid and actually ran out of Levothyroxine, I had a few days without taking while waiting for prescription and felt even worse, dreadful by day 3.

As a test I have upped my Thyroid dose as Rheumatologist said I would need to and I hadn’t. I’ve only had a few days doing that and already I feel brighter.

It is worth you checking when next in for blood tests, I think! Good luck, miserable for you 💕💕💕

Hi ,

I was just commenting about the thyroid and will definitely ask my GP to test thyroid function.

I’m glad you’re feeling brighter after increasing your medication .

Thank you so much, take good care xx

Yes do ask! It’s such a strange condition, it’s so hard to know what’s normal and comes with PMR and steroids.. what’s a side affect and what’s not. Think we end up suffering in silence! But I’m hoping you get a good doctor on your side and you are feeling loads better soon. Sending a big hug! 💕💕💕

Thanks so much, my GP is hiding away at present. But I’ll definitely ask for full bloods and thyroid function.

I want to know my iron levels too .

Take care 💕💕💕 xx

Sending you hugs too xx

I know , I feel that too. It’s dreadful, I feel as if I am dragging myself about. I hate having to keep pushing myself to do absolutely every single thing, but I do . This has happened for years along side the PMR . I tell the consultant I can cope with my level pain but I just can’t tolerate the total fatigue. They have no answers, after loads of test for thyroid etc, and nor do I . My only recommendation is to have a walk each day. And try not to feel guilty for all the times you wish your guest weren’t coming to dinner. It’s just plain horrible and I feel for you. And I feel sorry for myself, as my friends go of for a sail, long walk, dancing.

Hi Avadip ,

I agree the pain is bad enough but we push through with that , it’s the fatigue. Watching people do normal things and remembering a time when you could do it too .

I am so sorry for you too .

I hope there comes a time when you can go dancing again.

Biggest hugs to you

Same here - long before PMR as well. When we see long line-ups at any store we just leave and try again later.

Greensleeves profile image
Greensleeves in reply to Alebeau

I don’t blame you Alebeau , it’s not worth it.

Take care

I noticed you stated sore arms and aching legs. Were you at a previous dose where these symptoms were not present?

If yes, go back to that dose for a few days, and try a decrease of less magnitude. Sounds to me that 8.5mg is too little.

Hi Boss ,

Strangely enough I can’t remember the last time I didn’t have any symptoms of pain.

Probably 3 or 4 years ago , before life became very stressful .

I was on a maintenance dose of 5mg for ages , advice of rheumatologist, before going down to 3mg last year . I feel this has been a long time coming .

I agree 8.5mg is too little, I took 15mg in the early hours of the morning.

Looking forward to it starting to work.

Thank you for responding. Take care

At a lower dose than you .but have suffered fatigue all the wY. i DID FID THAT i AM ANEMIC SO TAKE EXTRA IRON AND DIET HIGH IN IRON, A b12, A FOLIC ACID AND A VITAMIN C. i LOOKED AT mAYO CLINIC SITE FOR PILLS OTHER THAN IRON AND FOUNF THE OTHER OER THE COUNTER RECOMMENDtions

Greensleeves profile image
Greensleeves in reply to Noosat

Hi Noosat,

Thank you, this is such a coincidence.

But do you know what I’ve just done , I’ve only just had some breakfast , but searched in the medicine cupboard and found some iron and vitamin B tablets and taken them.

The expiry date is June but I’ll take them and get some more .

Thank you I hope you get some relief from the fatigue.

Take care

Noosat profile image
Noosat in reply to Greensleeves

took Lily,dog to park for her to run and see other dogs, tired when got home, so lay down for an hour as it started to thunder,lightening and rain. Up now so can charge my electric car and do some pottering inside and on the deck. Hope you start feeling better. Probably take a few days for new meds to take effect if that is what you needed...

Greensleeves profile image
Greensleeves in reply to Noosat

The weather is atrocious, you are good taking Lily to meet her friends and get some exercise.

Pacing ourselves and resting is all we can do. I’m hoping the increased pred will start working tomorrow, and the iron in a few days. Iron goes in quite quickly from past experience.

Take care

It’s almost 3pm and I’ve just had breakfast after being up since 7am.

Crazy, thank you all so very much for your kindness and advice.

I can’t wait for the increased dose to start taking effect.

Filling my empty bucket with energy.

Hope it does anyway.

Wishing you all a lovely day in these trying times .

Best wishes and hugs to you all.

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

Do try to talk to your GP - because all this sort of feelings can come from the effects of the last year on us and our mental health.

Greensleeves profile image
Greensleeves in reply to PMRpro

I will do PMRpro , when I can get hold of him , last year and this year has been horrendous for us all. xx

Its just awful, i could literally cry and have done with the fatigue. Just no reserves for anything. Its s bit scary at times. Likd life is just going on around me. I hope your stress is resolved or eased, its a horror to try to cope with anything extra.

Aw I am so sorry and completely understand. There aren’t any reserves, they’re empty.

It’s scary and you do feel helpless.

Sending you hugs, I wish I could send you a big blast of energy.

Take care

We have visited RHS Harlow Carr today. Arrived , walked 20 mins , sat down, another short walk , sat down for our packed lunch. The queue for Bettys tea room and even take away , outfaced me ! Feel sorry for my hubby when I feel like this but he’s very sympathetic thank goodness! 😉

PMRpro profile image
PMRproAmbassador in reply to York54

Do they have mobility scooters for visitors? Lots of places do.

York54 profile image
York54 in reply to PMRpro

I didn’t even think of that ! We are home at our holiday cottage now , feel I’ve climbed Everest today but today was a better day than yesterday. 👍👍

Greensleeves profile image
Greensleeves in reply to York54

That’s good news, even the slightest improvement is a godsend.

If you’re tired tomorrow, you could stay in the cottage and recover , or sit in the car and be driven around. It’s a beautiful city , haven’t been to York for years, but have visited various parts of Yorkshire.

I do hope you feel a little better every day. xx

York54 profile image
York54 in reply to Greensleeves

Thankyou xx❤️

York54 profile image
York54 in reply to Greensleeves

Tomorrow we are meeting some friends for lunch so not such a taxing day 👍👍👍

Greensleeves profile image
Greensleeves in reply to York54

Sounds lovely, a nice chat and easier day with friends xx

PMRpro profile image
PMRproAmbassador in reply to York54

Ages ago there was a thread on one of the forums from someone who had a trip to the tulip fields booked but knew she couldn't walk. It took us a long time to persuade her that asking for the use of a wheelchair wasn't giving in. She used it herself as a rollator until she was tired and then was pushed. And the entire group enjoyed it as a result.

Greensleeves profile image
Greensleeves in reply to PMRpro

It sounds like it was the perfect solution for all . Wonderful idea , it isn’t giving in , rather the best option for the lady and everyone in the group who wouldn’t want her to miss out.

York54 profile image
York54 in reply to PMRpro

I’ve waited so long for this holiday. This cottage has been booked and cancelled twice. As you may know I live in the Midlands now but this area of the dales was my home, so looking forward to all the walks we had planned. I didn’t give a chair a thought, wish I had though. Good advice for future venues.👍👍👍

Noosat profile image
Noosat in reply to York54

Enjoy your vacation. My daughter and I are plannin a week at the coast in September/August. I am so looking forward to it. I used to go overseas for 2 weeks and then had days at the coast/beach. It is so easy to get depressed when having to stay in house so much I can become mildly depressed.. Lately I feel that I am practicing how it will be when I can no longer drive etc. I love my house and eck with all my plants, but do not want to be limited to just that. My daughter mkes sure I go out by planning some kind of week-end outing, even if it is just to the farmers' market and then lunch, so I remind myself how fortunate I am.

I am sorry to read of your plight. I fully understand the misery of utter fatigue as I am the same. My consultant has tried different medications to no avail. It is my personal opinion that stress plays a big factor and depression.

Hi Blodwin , thank you for your advice .

I do agree with you, I feel it’s stress in our lives . The final straw was the 2nd dose of the vaccine while going through very stressful times , which in turn can cause depression .

I’ve increased Pred, it’s helped with pain but not the fatigue.

It is extremely miserable, I do hope you pick up soon Blodwin . Take care

How are you now? Your situation seemed so familiar. Without the stress we could probably figure out a way of managing the rest but sometimes feel too stressed to employ stress management!

Try and look after yourself.

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