It seems the classic PMR marker of “morning stiffness” is NOT experienced by all PMR sufferers. My stiffness, for example is bad after sitting (especially in a car where rump is lower than knees).
But reading replies in another thread about fatigue I noticed a possible connection between morning stiffness and deathly fatigue, as in several who report one also report the other.
Just wondering:
Who on here suffers “morning stiffness”? And do you also experience debilitating fatigue?
I have neither. Just aches and pains, and stiffness after inactivity.
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OutdoorsyGal
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Hi Outdoorsygal and welcome to the forum , I have morning stiffness and df , also like you I have stiffness when travelling but also find my stiffness comes back by about 7.30/8oclock in the evening , I'm tapering using dsns from 10-9.5 of pred , I'm sure the much more experienced contributors will be along soon to give you much better advice than I can x
It is something the patient research partners jump up and down about with their medical colleagues! They are convinced PMR has "morning stiffness" - but it isn't, it is "stiffness" which may last a short time or be much longer, or may not appear (not that I know many PMR patients who didn't struggle to get out of bed and that is definitely "morning" stiffness). There is also myogelosis - the stiffening of the muscles after a period of inactivity such as sitting.
But in 10 years and thousands of stories, I can can't say I have noted any link between morning stiffness and DF, in either direction.
Now 10 years down the line, stiffness if I sit in one position for longer than an hour.
Thank goodness all those many years ago when computers became part of office work and the edict came out. move every hour for at least 5 mins. I already knew this mantra as Mam had RA and they always insisted........no longer than one hour sitting in the same position............her worst stiffness was in the morning and we blessed that day we got a shower.............
I am lucky in that I have no PMR pain or stiffness as long as I am on enough pred for me. I would not say my fatigue is ‘deadly or deathly’ but I am abnormally tired, and need to rest and pace myself. If I don’t then my fatigue is into the ‘deadly’ area.
First off, the DF folks refer to, is real. It would stop me in my tracks, and i would literally collapse on any flat surface.
That type of fatigue was transitory, and debilitating. After a nap, usually an hour, I was able to resume activity. I did learn that planning 15 minute breaks could ease the worst, so I on I went.
The fatigue episodes were worst while tapering from 10 to 7 milligram pred. I am a slow taper person, usually spending months at each taper level. Below 7 mg, fatigue is generally gone. Stiffness is still present, but works itself out quickly.
I wondered if I was experiencing a blood glucose drop (I am not diabetic), or a blood pressure drop. Never could round up the energy to check either in the midst of the event.
I am tapering to 4.5 at the moment, down from 60 over 18 months. I have recently started getting the morning stiffness and after sitting for any length of time, The DF is horrific and has not subsided with the decrease in prednisone.
I don't think morning stiffness is particularly a symptom of PMR. If it were I've had PMR most of my adult life. I remember being given physio exercises for my back, mid 30's, and when told to do morning and evening wasn't sure how I could do the morning ones as I always felt stiff when I got up. In fact I did and was the better for it. PMR was a whole other animal. The "stiffness" with PMR which was in fact pain upon attempting to move certainly meant I had to plan how to get out of bed. But I also had to get up from a chair in stages, and I've frequently mentioned the evening when I took half an hour to get back up off the floor after doing (as well as I could by then) my physio exercises. "Stiffness" doesn't begin to describe how I was in those days before PMR diagnosed and treated.
I had major stiffness pre diagnosis and pre pred. The stiffness recurs when either I take pred later than usual in the morning or for the first few days when tapering. The deathly fatigue kicked in later when I first went below 10mgs. It is spasmodic and I can't seem to identify a particular pattern or reason for it. It can last 2-5 days then seems to go again. Of course the temptation is to then do too much on the good days! The stiffness and deathly fatigue symptoms are not necessarily concurrent in my case.
I have both...at least the illness presents with many variables....better moving moving moving. I sit now on a Swiss ball because one can keep on moving, up then back to an ordinary chair....it is a self limiting disease, we are told...so one day all this nonsense will be gone..🌞😉alida
There is no way I could sit on a Swiss ball! My balance has gone haywire!
Hi - am at 9mg about to taper to 8mg. I have had fatigue from start when I would have to rest after getting dressed! Now better and back to working full time but having to actively manage what I do. No stiffness since starting pred and (so far) pred is managing pain - just odd twinges & muscle weakness. Seems we all experience PMR in our own ways 😀
I have morning stiffness and DF which were both much worse before I was put on prednisone . My son has ankylosing spondylitis and his pain is always worse after long journeys and times of inactivity. He finds exercise and stretching helps . Have you been tested for AS?
As I mentioned when replying to your previous post, the deadly fatigue is very real for me and pred does little or nothing to relieve it. As for the 'morning stiffness', that was excruciating before I started on pred. It would take me a good 20 minutes just to get out of bed and another half hour to get washed and dressed. I'd then be exhausted for the rest of the day. It was agony to get down to use the oven or pick something off the floor and equally agonising to reach for something from a high shelf. Every movement was compromised in some way. Pred certainly alleviated all that I'm glad to say and I've only had twinges of pain and stiffness while taking it.
I have GCA no PMR. But I have morning stiffness. Stiffness after sitting and morning fatigue. I improve by 11am and am almost OK by 3 pm. This has got worse since I dropped below 7mg pred. I am on 4 mg and seeing Endo in May to check adrenals. I am pretty sure mine at least is Pred withdrawal.
Except that any PMR symptoms that did develop would have been managed by GCA level doses until you got to a lower dose - and what you descibe is typical of just about managed PMR.
I'm so stiff and sore this morning I can barely move. I'm at 5 mg. pred after 2 1/2 years of pmr. It takes several hours for the pred to kick in--usually mid afternoon before I rally. I have no idea where this mornings stiffness and soreness came from--but then I rarely do. At the moment I'm not fatigued, although admittedly in the evenings I'm so tired I can hardly get around. I'm staying at 5 mg. for the course of the summer. Last year I had DF when I tried to go below 5 which is why I'm in no hurry to reduce this time around.
The morning stiffness/return of symptoms is because every morning the autoimmune disorder causes inflammatory substances,, cytokines, in the body at about 4.30am. The optimum time to take pred to reduce that impact is 2am - the pred reaches the peak in the body by 4am-ish and prevents any inflammation developing in the first place. The sooner after 4.30am you take your pred, the less inflammation has developed, the less the pred has to mop up and the sooner the symptoms that have developed resolve. Taking the pred with a meal will slow down it being absorbed and starting to work - as will using enteric coated pred. Ordinary pred takes from 1 up to 2 hours to be absorbed and start to work, enteric coated anything from 4 to 7+ hours.
Thank you. I have such sleeping problems that I could never get up in the wee hours of the morning to take pred—I’m always grateful for what little sleep I get whenever I can.
And even from the beginning of pmr, it has taken hours for the pred to kick in. Mornings are impossible for me. I think I’m a slow absorber—and I’ve been told many times I’m a slow detoxer.
That was the other thing I was going to say - since it takes so long for it to work for you, have you tried taking it before you go to bed? Or at least, some of it?
The usual split is 2/3 and 1/3 but everyone is different and you have to experiment a bit. The second dose should be taken about a couple of hours before you would expect the symptoms to return - although if you take longer to respond maybe even earlier would make sense. If it were me, I would try taking it before bed first and see if that helps.
Ok, I think I’ll try 3 and 2. Starting tomorrow. I’m the one who posted a long while ago on the other site that my gp said he went to a rheumy conference where they recommended split dose for some autoimmune diseases, pmr being one of them. 4 and 1 didn’t do much for me so I’ll try 3 and 2.
I'd recommend taking your usual dose in the morning, then the new evening dose in the evening, and new morning dose the following morning. Otherwise you'll be "short" all day tomorrow.
Thank you—I had wondered (and worried) about that. I am so unusually stiff and achey and sore today (never really know exactly why) that I thought 3 mg tomorrow morning might not do the trick.
Thank you for explaining that so clearly but can I just ask you ...if I took my morning dose of ordinary Pred between 3 and 4 am with a banana to line the stomach would that be a good idea? Is a banana the right amount of food to protect the stomach but not to delay the “mop-up”? (I can’t eat yogurt which is used by other people here.)
I have taken my pred. with a banana at 4 am since being diagnosed in February 2018 and it has been fine. If the banana is huge I halve it and eat the other half later.
I am tapering from 3.5mg of prednisone to 3mg. I notice increase in morning stiffness, some small cramping in lower legs discomfit at about 4a.m., and the dreaded afternoon fatigue. I look on these effects as due to the tapering that my body is trying to adjust to, so will continue to stay on the 3mg unless it worsens. I will continue my wonderful very hot morning shower concentrated on my lower back and gentle exercising - trying not to sit for long periods of time.
No morning stiffness for me, and like someone here said 'motion is lotion'. I go for a walk before breakfast. I get 'evening stiffness.' Getting up from a chair and walking then is difficult.
I wake up very stiff, hips especially, unless I take my uncoated pred about 230 am. The fatigue can come and go. I sure don't have the energy I once had. I would say I'm at about 60 %. Since the weather has improved I have started walking but don't go too far unless I can't return. I just reached 7 after three years PMR.
Deathly fatigue after showering every morning. Pre steroids I could hardly get around first thing. They’ve sorted that but not the fatigue. Now I have issues getting out of chairs where, as you day the rump is lower than the knees. I put that down to muscle wastage due to lack of blood flow. Told to do weight bearing excercize to increase strength but I’m too fatigued to do that.
For me PMR = MUSCLE PAIN! Sure I have morning stiffness, but I'm 70 years old! My husband walks with a lot more stiffness when getting out of bed. If true pain in my upper arms, neck, upper back or thighs woke me up in the middle of the night, prevented me from sleeping or getting up in the morning, I would be considering a flare in PMR.
If I sit too long my muscles are stiff and it takes a few minutes to get the blood flowing. Again, my husband is exactly the same.
I did not have a problem with fatigue in the first few years of living with PMR. Fatigue became an issue for me as I tapered. Deathly fatigue hit at about 10 mg. It seems to be my only symptom when I reduce, unless a flare rears up.
Over the past 5 years I've become convinced that I do not absorb the full amount of prednisone. It required 40 mg to get my pain under control, I had to reduce .5 mg monthly, with 2 flares setting me back weeks at a time, to get from 16 mg to 9.5 mg at which point I had a flare.
My problem is getting support from a physician in definitively determining that the bio-availability of prednisone is my issue. I saw an endocrinologist last October regarding adrenal insufficiency and was told not to worry, I was just sensitive to drops in medication and to continue to take it slowly. This was good news in a way, however, because of a major flare earlier this year I will be going back to see the endocrinologist again in June in the hopes of resolving the question of bio-availability. I'm not hopeful, but have to pitch my case.
I had morning stiffness when I used to take my Pred. in the morning. Since taking it late at night around 11.30 p.m. with something to eat, I'm pretty good in the mornings, unless I walk too far or exercise my arms too much at Tai chi, which makes my arms, shoulders and thighs ache. I often get very weary and ache quite a bit around lunch time but if I lie flat on my bed for about an hour this wears off and I can manage for the rest of the day. By the end of the evening I'm starting to feel stiff again but that doesn't matter as I will be taking my Pred. soon anyway. I'm reducing from 4 mg to 3,5 mg. after starting with PMR in October 2016 on 15mg. So far so good!
Hi, not too bad in the morning, but seems to get worse as the day goes on. Fatigue is the main problem for me, I just feel exhausted after the slightest activity.
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