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.
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
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-
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
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
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!
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.
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.
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.
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.
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....
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...
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
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
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 .
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.
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.
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 !
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.
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....
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 .
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
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
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 .
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?
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 .
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 💕💕💕
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! 💕💕💕
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.
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.
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
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.
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...
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.
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.
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! 😉
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.
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.
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.
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.👍👍👍
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.
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!
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