I have just found this site and haven't explored it fully yet, but in particular I'm wondering if others with PMR diagnosis, on prednisone, are experiencing the extreme fatigue I am. I was diagnosed a bit more than two months ago after three months of symptoms, the prednisone worked like magic, no pain after less than 24 hours. However as time has gone on this awful fatigue has become worse and worse, some days hard to even walk around the house. I was initially on 15mg, after a month reduced to 10 mg, the when I reported how bad the fatigue was, put back up to 15, then up to 20. None of the changes have made any difference.
is this fatigue just part of the condition? my doctor seems to be puzzled.
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Tiredcat
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Oh dear, I also suffer extreme fatigue, but I find with myself, it's all mind over matter.
Example. If I feel really tired at the beginning of the day, I really try to push myself to keep busy. If I sit down on my comfy armchair, then voila, I'm fast asleep again. Getting up with pains.
Don't fall into the trap of giving up. Resting too much gives me more pains than I get when keeping busy.
Tiredness goes hand in hand with prednisone...well I have read here on this forum that many many peeps are feeling this side effect from prednisone . You are not alone.
You don't give your age, or quantity of medication you are taking.
Rest dear, but within limitations. Exercise is part of recuperating ..
Have a nice day.
YuliK. Age 76
May I add that you should reduce your Prednisone very very slowly. Not more than 10% at a time.
I am thrilled to have a reply already! Thank you Yulik.
I am 69, so about normal age to have PMR I think. My mother had it at about the same age.
I have wondered if the fatigue is because of the prednisone or because of the condition.If it's the prednisone, you would think taking less would help, but my doctor has upped the dose to try and help, to no effect.
I was originally on 15 mg, with miraculous results for pain, feeling marvellous, then the dr lowered it after a month to 10 mg. The fatigue set in so she has put it up to first 13, the 15 , then 20, all with no effect.
I have previously been pretty fit, have been a gardener by trade, and was still doing a few clients until the fatigue has put a stop to that . I have to walk with a stick at the moment, I'm so wobbly on my feet.
Hi tiredcat. I’m relatively new to PMR and GCA. I was diagnosed in March. I get wobbly legs and extreme fatigue and think many others here do to.
Thanks for your reply davidcantswim. I've now had a chance to read a lot more on this site, and I can see it is 'normal' with polymyalgia. My doctor seemed to find it puzzling so I was puzzled too, and was floundering round for an explanation. How wonderful to have the experiences of others who are experiencing the same! I am quite prepared to cope with whatever is inevitable, it's when you think there is something unexplained going on that you feel upset and anxious.
I can remember telling my gp before diagnosis that (I had to have naps and I don’t do naps ) certainly do naps now .
Hi tiredcat, welcome. For me fatigue was one of the main symptoms of PMR. I had pain and stiffness but was used to that from other conditions. But I couldn't hardly hold my head up some days. I call it my glassy eyed slack jaw look. It does get better, I periodically have a bout. Usually if I have overdone things.
Hello, they can both make you feel tired. Pred is a funny one as it both gives you false energy and floppiness. Upping the dose will compound this. The autoimmune process will still be going on at this early stage too which causes fatigue. I’m surprised your GP is surprised.
i am so delighted to have had all these replies, which in fact have come I think from the other side of the world to where I am (New Zealand}.it really is wonderful to read the supportive comments and advice after feeling a bit overwhelmed by my new PMR life.
It is very reassuring to find it isn't it. It was a life saver for me. I was more confident about asking the Dr questions...even though I still get tongue tied! Hello from the UK. There are a few members in NZ.
Hello from Australia! I was diagnosed with PMR only 11 days ago. I am a 70 year old lady and was very active before. I have all the classic symptons and extreme fatigue. This was before I started taking Prednisone of 15mg and I still have it (fatigue). The tablets only started to kick in at day 9.......so I'm early days. Booked in with a Rheumatologist on the 20th. Does anyone else have one hand only go really cold on them? Also I have dry eyes and mouth.
Hi Tiffany2. Welcome to you also. It is great that you are seeing a Rheumy so quickly. I suggest you write down symptoms and questions to take with you as pred, coupled with the situation of the first appointment, can overwhelm and addle the brain! Nothing worse than walking out of the appointment kicking yourself because you didn't ask the questions!
It may be worth you posting your question on a new post as it may get lost and remain unanswered on this thread.
I seem to remember a phase where my fingers in one hand got cold, but don't think this was necessarily PMR pred related. I do have dry eyes and mouth, but again do not not know if this is related or something different. I do try to keep myself hydrated and also, following a but of herpes of the eye, apply eye drops daily which helps.
You have a golden opportunity to ask your Rheumy on 20th, who will be the best person to discuss your symptoms with, but as I say jot them down so that you don't miss anything.
Good luck on your journey. Keep us posted on your progress.
Where are you in NZ? There are a few contributors - mainly on North Island. I did have the pleasure of meeting a couple of them when I visited them in Auckland. My daughter lives on SI - so we made the trip up.
Go to your avatar on top right of screen. You then get “Find people near me”option. This works in UK on post codes, not what criteria it uses in NZ, or if it works - would imagine either delivery code (RD12 for example is my daughters) or Numbers after nearest town (Rakaia 7782).
If that fails put up another post asking for NZ members to contact you.
Here are some I know (sure they won’t mind me naming them) -
Hi there. I'm living on the Kapiti Coast...over the water from you. Very fit, active 69 year old when diagnosed August 2018. A lifestyle changer for sure. Not all bad, either.
Just to say given that you need a stick for mobility...I would say that the initial inflammation has not been controlled and you were started in tapering too soon. I had a rocky start needing high Prednisone to get some control. The Duracell bunny wired and then crashing. Nine months along I finally getting a slow taper...currently 12mg and I am returning to longer walks and some exercise.
hi Kinnear, heartening to hear from someone not too far away. Yes, I definitely think dropping from 15 mg to 10 after a month must have been too quick. It seemed I was the star patient , but not so great now!
I have sent for the book recommended, more knowledge will help I am sure.
Hi Tired cat and welcome. Glad you found the site as I am sure you will find it supportive. The symptoms you describe are pretty common sadly. The fatigue is an unwelcome part of the journey, which makes forward planning very difficult. I am going through a phase where I am awake for about seven hours split into 3/4 hours in every 24 hours. However I have definitely 'over done it' over the past week having been abroad for three days, helped out at work for two mornings and baby sat my grandson which has wiped me out! Pacing is key but, two years into this journey, I still haven't mastered it.
I found the wobbly legs were at the higher pred levels and this eased as I tapered meds down.
Try to go with the flow. This reduces anxiety. Perhaps keep a diary recording meds, symptoms and activities so that you can analyse it for any patterns and adjust your activities meds accordingly.
The activity and support on this site is absolutely marvellous. It doesn't matter what time of day or night you pose the question or are in distress someone will answer. Just knowing you are not alone, or getting reassurance what you are going through is normal or not, gives you the confidence to take back control to work out solutions or course of action. In my view this community is worth its weight in gold!
I have extreme fatigue, I find it an effort to even put my arm out to turn on the radio! I have to record TV programs as I go to sleep in the middle then miss half of them. Fatigue is a symptom of PMR. Steroids just help the pain.
Well we aren’t puzzled. Deathly fatigue is one of the most trying symptoms of PMR. I am sure that it didn’t help to be catapulted down from 15 mgs to 10 mgs and then raised up again to 15 mgs, then 20 mgs. I expect that your body is pretty confused. You may even need the higher start dose of 25 mgs. Then never reduce by more than 10% of your dose. Use one of the slow tapers recommended on here and only once your symptoms have settled. When I am in the throes of the fatigue, I have regular daily naps and really reduce my activities. It is important to remember that you are still ill and the Prednisalone is only controlling the inflammation. Your activities really need to be paced. Having said that, I have managed to stave off the tiredness with walks, on the flat, in the fresh air ( sometimes).
(I just wrote a reply but think I have sent that to myself by mistake!)
Thanks so much SheffieldJane, your post is very clear and helpful.I am so glad to be able to understand what's going on.
One thing that puzzles me is the idea of exercise. At present I can only shuffle along on a walking stick, climbing the stairs is a challenge, so how??? Previously i was quite a fit person, but now....
If that’s all you can do for now, that’s all you can do. A number of sufferers have been confined to bed in the early days. I wonder is something gentle and water based might be useful? Your local pool may run a suitable class. Your top priority is getting the inflammation under control on an adequate, steady dose of Pred. I feel sure that you should and can have better mobility. Are you under a Rheumatologist? You may get more joy from a more knowledgeable doctor.
Your doctor seems puzzled! Tell him it's all part of the Pmr.I have found my fatigue has improved as I have reduced the steroids but that's taken 3 1/2 years.I still have sofa days when I can't do much and have no motivation.
Thanks for these replies.On reflection, i am now wondering if the doctor was puzzled because of something in the blood test results,( which she told me about but I didn't understand ) and that is why she is arranging for me to have a thorough going over at the hospital. I thought she upped the dose because of the fatigue, because that's so much front and centre of my mind, and all I can think about. Not all that easy to think clearly when you're unwell, and easy to get the wrong end of the stick.
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