Why is this fatigue getting worse instead of better!!?? Seriously I have not improved one bit in the last year. Am I missing something? Realistically I haven't even been able to reduce - I'm actually on more than this time last year. (on 4.5mg) But the fatigue is not lifting - its just getting worse as far as I can see. Its getting a bit worrisome to be honest. Am I expecting too much. Whatever about it staying the same - but worse - I'm going back wards! (two and a half years since diagnosis).
Fatigue!!: Why is this fatigue getting worse... - PMRGCAuk
Fatigue!!
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powerwalk
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Ohhhhhh powerwalk, I cant imagine how frustrating that must be for you... I have good days and bad days, but overall think I have improved in the last 10 months. What does Rheumy say? Could it be something in addition to PMR/GCA? have you have a complete blood screening done lately?
powerwalk• in reply to
I don't see the Rheumy anymore since she took me off the pred at 12 months. Disaster - I've never been right since. My GP has been giving me the prescription - with the "its going dosn isn't it speech" - well it really isn't. I am literally drowsy - I know I'm getting over a stubborn UTI but even without that - the fatigue is just awful. I had blood tests done recently - nothing showed up - except my cholesterol!!! I keep thinking when I finish work in a few months - then things might change.
Hi Powerwalk,l am in the same position,l,seemed to be OK for about six months on 3 mg .of Pred.,not as well as pre PMR,but l was managing OK,just lately though l have been having pain and stiffness in my legs and a lot of swelling above my knees.l am beginning to think that this is not the PMR but something else.l cannot lower the preds,it causes a flare up and although l would love to be able to come off the them l still cannot manage Without the
Sorry about the unfinished post,l hit the reply by mistake,as l was saying ,l would love to come off the preds but could not manage without them.l hope that things will improve for you soon .
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Have you had any adrenal function tests? That would fit with increasing fatigue at that dose.
But 2 1/2 years is early days - the median duration of pred treatment in PMR is 5.9 years. I'd suspect that really you need a bit more - especially as you are still working.
Just whatever they do in the runn of the mill thyroid tests - not the specific specialised Adrenal test. Yes really struggling - I literally feel panicky cos I can't think straight I'm so drowsy.
Thyroid tests have very little to do with adrenal glands! You need a synacthen test - and ACTH stimulation test.
yes - I can hear my doc now "if there was anything wrong with your Adrenals - it would show up in the other tests" - but I totally agree with you its not the same as a specific Synachten test. Does a Consultant have to send you for that or can a GP send you? Would you know?
For everything EXCEPT cortisol production. The rest of adrenal function does normally proceed much the same. What we are talking about now is not overall adrenal function but specifically the cortisol.
Probably depends where you are - I know of people who were sent for the test by their GP.
So here's what I don't understand: twice I had debilitating fatigue at 4 1/2 mg. so I went back up; am currently at 6, some fatigue but nothing like it was. Let's say when I was at 4 1/2 mg. I have the syncathen and acth stimulation tests which show I'm capable of producing cortisol...what then? Do I stay at 4 1/2 unil my adrenals wake up or do I go back up again for better quality life?
My real question should the fatigue return--is there a ballpark figure for how long it sticks around? Or Is the fatigue inevitable? When I get down to 5 again, using dsns, I plan to stay at that level for several months in the hopes that might allay some of the fatigue when I try to reduce again. Thank you.
Good question - and one for which there really isn't any answer. Everyone is different - and that isn't just a get-out! Rod Hughes keeps people at 5mg for up to 9 months on the grounds it is a dose that is enough to tickle the adrenal function into life for most people but is enough for safety except in exceptional circumstances. Once they are awake then a slow reduction should be OK - the adrenals will produce more as the pred dose falls.
An experienced endo SHOULD be able to interpret the results of the synacthen test even while you are still on pred - there are some who refuse to do one until the patient is off pred which to me seems a bit pointless, not to mention risky, for patients who may not have any adrenal function.
I think around 5mg may be the toughest part of the reduction - but there are also people who just reduce to zero and stop and it is fine. Quite a few seem to have a really hard time for a few mg and then suddenly they are out of the wood and carry on to zero.
Oh to be out of the woods!!!! Thank you.
So the hard time can be part and parcel of the illness...inevitable for some of us perhaps? And we power through until the fatigue lifts or go back up a little, even 1/2 mg, to feel a tad better? Pardon me for asking the same question again, I’m not real bright.
Yes, I think so, for some people. After a couple of years or, usually, more on pred you have to remember that you are older and less fit because you haven't been able to do much. Then suddenly at the back of your mind is that you are on a low dose - so I must be "better". And your expectations rise. At the same time as in fact your body is having to adjust to a new situation.
It sounds to me as though it may be an adrenal problem causing your present fatigue. Those pesky glands will have been asleep from a couple of weeks after you started high/ moderate doses of prednisolone. I understand they WILL wake up at some stage...just a matter of time.
Have you had a Synacthen test performed? This will show whether your glands are CAPABLE of reawakening.
OR...are you doing too much?
Depressing though it may seem, is your dose high enough to keep dealing with the disease rumbling away in the background?
I have had PMR for nearly three years and am on 7mg presently.
I felt AWFUL on 6.5 mg...so tired, but feel considerably better now I am back on 7 mg. don’t get me wrong I still need to pace myself, and watch my spoons, but nothing like as bad as I felt last month.
I do hope things improve for you soon.
Mary
Yeah- I know what you mean - it may not be enoug while I'm still trying to work for another few months. I think I may ask for that Synachten test at somestage - I don't think my adrenals were the best to start with - I had ME for many years before this and fibromyalgia. Maybe I'll give put it up a bit. Though as I say - my doctor wants it DOWN!!! Thank you so much.
Poor you l really do not know how l could have gone to work with this illness,l messed up my previous post ,l have to admit ,because l was nearly falling asleep ! It is challenging enough to look after the house and garden yet alone having to cope with a job. I was fortunate that l was retired before l developed PMR,my heart goes out to you ,thank goodness you are finishing work soon, l hope that more rest will help you to feel much better.Good Luck.....
Can you get permission for/ try a higher dose? What dose did you feel best at? If you ever did? Stopping work will help though. I stopped this time last year, and now work very much part time...max 2 hours on four days a week., and I can cope with and actively enjoy that. Full time was impossible for me and most others.
(Just redoing this reply - I'm not sure it got to yu properly) Yes I feel its getting that way for me. So I get kicked out anyway in a bit over 5 months - so that should help me. I can put it up myself - my doctor won't know til I go back to her!!!! But I may just have to go up a bit to get me through these last few months. Disappointing as it is.
Yes I feel its getting that way for me. So I get kicked out anyway in a bit over 5 months - so that should help me. I can put it up myself - my doctor won't know til I go back to her!!!! But I may just have to go up a bit to get me through these last few months. Disappointing as it is.
May be disappointing but if you feel better? And you will probably improve quickly if a higher dose is the answer.
Can you finish work now on the grounds of your ill health?
I didn't really go down that road - I suppose in my head I was going to be better "any day now" - at this stage I will try and see it through if I can. Nearly there. But yes I think I'll increase a bit. Get me over the hump as they say. For someone with ME/Chronic fatigue - who knew these realms of even deeper fatigue existed!!! Or maybe I just forget the really bad early days of ME years ago!!!! Probably. Thank you.
Yes, try a higher dose. Sounds like you need it, and then hopefully you will feel a lot better and reduce again as slowly as you need to. It doesn’t help to rush it, however much we would like to!
I agree with all that has been said and really empathise with you it is so hard with the stress and strain of work to recover your energy.
I am down to 6 mgs and can rest and sleep when I want. I had an intense period of deathly fatigue during my months at 7 mg - it was scary. This is so much better and the fatigue is much more normal. I have to be careful not to forget to pace myself - I do feel quite ill if I do too much. You do too much all the time, is my guess.
Its the work - thats the problem I think. I've put the pred up a bit - the difference is quite scary to be honest - when I get bad - its literally like letting the air out of a balloon. Everything goes - my eyes - the sorness in my eyelids, black eyes - can't think straight - kinda scary! I couldn't speak I've been so bad. But roll on the next 5/6 months - then I'm done and hopefully a better quality of life - if not cured - maybe more human!! I mean I've tried a hundred times to manage at 4 - and its just not happening! Thank you.
Early Retirement on health grounds was our most advantageous package.
Really? I thought that would be worse - but it worked out better for you?
Not for me personally. I broke when I retired unfortunately. It was significantly better money though. I helped people get it.
Oh interesting. Thank you.
Sometimes I was so stressed at work I could hardly string a sentence together. They kept reducing my staff and increasing the workload. I am sure it was a factor in PMR in the end.
Yes totally would agree with you there!!!!
Powerwalk I have nothing but sheer admiration for those who work with this condition. I just can’t. I am so unreliable. Even small things see me letting people down and cancelling at last minute etc. which I despise myself for. I make plans when I get a small window if feeling less than horrible and inevitably I cannot follow through. Hope you feel better soon. I too have severe fibromyalgia and ME. Don’t underestimate the effects of those. Xxxxx
I know - I've managed for years in work with the ME and Fibro - but god this PMR fatigue is just unreal. So up go the pred again til I finish here!!!!!
I wonder about fibro sometimes.
Yes the good old Fibro!!!! Another thing you can't cure. All without doubt in my case associated with severe stress.
My first Rheumatologist said that I had it alongside PMR and I do tick all the symptom boxes but I didn’t have faith in his off the cuff diagnosis and don’t think I was in enough pain prior to PMR diagnosis.
Oh really? Do you still have symptoms of the fibro? I had pain for several years - and I have to say its not meant to be h elped by the Pred - but definitely when I started the steroids - it totally had an affect on the fibro pain. (So don't know what tht was all about).
I maybe in denial. Doctors seem to use it as a catchall diagnosis that they can’t do anything about. I don’t think I would get any good days if I had fibro on top of PMR, which I find predictable to an extent.
Yes - know what you mean!!
Do you know if you have it? It causes shocking fatigue and pain xx
I kind of doubt it unless it is holding hands with PMR as it recedes.
Morning P.W. I`m a male with this dreaded syndrome. I`m not in your position, however, There`s much to had by asking for a second opinion. Know in advance what you want to be asking. There`s some good reading on here, use the experience of others. In your position I really would go to town on a second opinion and be aware of your file being read by whoever is the second opinion. Best foot forward... : )
If it wasn`t so much of a pain, it`d be funny, but it effects all of us in a different way. Best we can do is make a joke out of our situations.
The fatigue persists for me as well. So frustrating. I'm 2.5 years since diagnosis. I stopped my taper at 4mg which my rheum doc supports and have been on that dose for 9 months now. When I try to go lower I hurt. There are good days and bad ones, though I don't need as many naps as I did in the early days. I still fall asleep sitting up in an office chair in front of my computer ... very disorienting to wake up from! The brain fog is awful too. I feel like I'm sleep deprived though I get enough hours.
yes know exactly what you mean. We can only wait for things to maybe level out. I would be about the same time into my journey as yourself. A waiting game at this stage. I do find tht level of total fatigue a bit scary - its like literally deflating a balloon. So up the pred goes again a bit - make things a bit more bearable. Best wishes.
Answering you a bit late here. I remember your desire to continue working, but am not sure of your reasons. Is there a financial advantage or is it just a matter of will on your part? You will know if you can't continue even on a bit more pred.
I had a sympathetic doctor who helped me, with added medication, to work until until I could retire early for medical reasons. Five months doesn't seem long on more pred, and then tapering when you have the "luxury" of resting. Be kind to yourself. You are brave and admirable to continue working. Do you like your work?
Probably Will on my part - I have a fear of packing it in and being very sorry. I suppose I've always preferred to be in work - and no I certainly don't always love it - in fact I definitely know that the stress that one of the people I worked for - for a number of years is quite likely the reason I got this PMR. Severe stress. That person is gone now - but that doesn't make the issue gone for me unfortunately. Yes I think upping the pred a bit will hopefully get me through the next 5 or so months. If not I may have no choice but to give in! Thank you so much for your reply.
Is it possible that you have sleep apnea and just are not getting the REM sleep you need
no - its definitely related to the condition and lowering the steroids. Thank you for your reply.
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