My PMR symptoms are in check. I have no pain & 10mg is working, however I struggle to rouse in the morning & it takes me a good few hours to be fully awake, once that occurs I can have a day when I feel just about ok with low level activity, the following day I will carry out what I consider to be normal activity & prolonged low level exertion. The day after I am exhausted & sleep on & off all day. I have no energy and as Austin Powers says " I've lost my mojo!"
I have been off work since February this year & I am desperate to get back to work, however I can't see how I can as i'm likely to be exhausted all the while based on the above. Work will not let me have a rest day in between a normal day. I have a very physical & mentally challenging job.
Is the extreme fatigue likely to be the PMR, a side effect of Pred, or a combination of the both?
I'd welcome advice.
Thanks.
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Naim1
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As we said in previous post, it seems that you may have more than PMR going on. Fatigue is a major factor in all autoimmune diseases, and if you have no symptoms of PMR then there is obviously something else causing it.
If you were a bit lower we might go for adrenals - but as you seem to have had similar at higher doses, then that probably squashes that theory.
But what you refer to as
….I can have a day when I feel just about ok with low level activity, the following day I will carry out what I consider to be normal activity & prolonged low level exertion.
...maybe is not be what we would recommend with PMR.. can you clarify what you are actually doing please.
Have you been referred to a rheumatologist.. or is there any possibility of getting a one-off private appointment?
Not been referred to a rheumatologist at all since diagnoses.
In terms of activity my daily routine has be pottering around the house or garden, nip to the shops then rest if I feel tired. I try to keep moving.
Yesterday I met a friend, was out all day with prolonged gentle walking with the occasional inclines, get out of breath & then rest for a while and stop for tea in a Cafe.
This morning as usual found it difficult to rouse, by mid morning had to sleep again for an hour or so, was then groggy. I then started to rouse, just about felt ok then crashed this afternoon & slept again.
This keeps happening despite my best attempts to drag myself up by the scruff of my neck.
That definitely doesn’t sound normal ….and with lack of PMR symptoms, I think you probably require more medical advice to rule out other conditions….thyroid? anemia? Long covid?
So please contact GP, although I’m know that’s not as easy as it should be…and please let us know.
I know nothing of PMR symptoms yet, but I do know a little about thyroid symptoms as had it for years before diagnosis. Hyperthyroid, Tiredness, lethargy along with many more symptoms . I would suggest having a read up and asking the doctor for a blood test.
You have replied to me, but as the author of post Naim1 will see it… and thank you.
As you say you know nothing of PMR symptoms yet, do you suspect you have it? If so, please stay with us… and read all you can on the forum… FAQs are a good start.
Yes, a good 8 or 9 hours, however the effort put in is no where near the amount I need for my job over the same amount of hours per working day, so it has continued to be a good benchmark for being fit for work.
Terrible when you have been active & ok then it hits you out of the blue.
Despite your head wanting to do one thing, your body does another.
8 or 9 hours is a long time for anyone with PMR -or any autoimmune illness-no wonder you are shattered. You need to cut your activities into shorter periods -and rest in between.
I realise you are a lot younger than many on here -but your PMR doesn’t know that! And the advice from most would be rest, rest and more rest….
As SpaghettiWestern99 has said -took them 6 months to even consider returning to work
I was in my early 50s when my symptoms started - I couldn't have done that without breaks during the day. I could work a lot longer than that but all I did was sit in front of a computer and translate, reading German and typing English. Walking, especially slow wandering around shops or town, was killing.
I am hoping for the best but planning for the worst, what I cannot find out or get a straight answer to is, is PMR classed as a disability?
My employer has been supportive up until now, I am now on half pay & have been advised unless I return to the work place by December this year, they will stop paying me, so that says to me i'll be sacked.
Obviously i'm not seeking HR advice, just trying to understand if PMR is a disability ?
The problem with PMR is that is controllable with drugs and is usually self limiting - so not classed as a long standing degenerative disease… but that doesn’t mean that at times it doesn’t impact on your working life as stated below. Unfortunately it isn’t mentioned specifically in the blurb like fibromyalgia or SLE [Lupus] but that doesn’t exclude it.
This link -Definition of disability under the Equality Act 2010 - states
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
This is another link within the above - and suggest you take note of sections B - substantial & D - normal day to day activities…. Section C - longterm - perhaps more wishy-washy
Having been in reasonable good health most my life, it makes you realise when something strikes you down the system in general says ' tough luck, get on with it, we are not interested, fend for yourself, sink or swim, we don't care'
In the NHS they used to pay full pay for 6 months and 6 months at half pay - but you weren't dismissed at the end if you were still recuperating. No doubt it is different now but it is essential to get Occupational Health onside wherever you work. PMR comes under disability legislation for getting reasonable adjustments to working practice I think - but that isn't the same as "being disabled" since it can usually be well managed with medication. The problem is that in the past work has been less of a factor - patients have been mostly women over 60 so not an economic factor. Whole different world now!
It very much sounds to me that you are having alternating good days when you do a lot and that is followed by a bad day? That is a very typical pattern in people who are trying to do too much. Being on pred isn't a free pass to go back to your previous normal activity levels - you have a new normal now. Harsh but true I'm afraid. You have to learn to pace so you have a more even lifestyle and then you might avoid the rollercoaster effect. But anyone who has a high stress job, whether physically or mentally has to do some reassessment.
This has crossed my mind & obviously is concerning as I may not be able to return to my job 'as was'
I've been sat waiting for improvements in between seeing my GP. I have good & bad days but no where near normal 'as was' before being diagnosed.
At some point I will have to have the conversation with my employer & occupational health unit, but question is, how long do I wait in the hope things improve by themselves or through other medication?
Which goes back to what dorsetlady says, " is something else going on?"🤔
Naim1 _ I’m not an expert on conditions, however I do resonate with the symptoms. I was on a similar amount of Pred and the fatigue with my PMR condition took 6 months before I could manage to go back to work on a phased plan.
I sympathise with you. Am exactly the same. Find it so difficult to function normally. Thankfully I am retired so can relax and sleep when the exhaustion becomes too much. Also have another autoimmune disease which causes chronic fatigue. But now both are a whole new ‘ball game’! Hopefully you will be able to find a solution Take care.
Hi Niam1.... to add my two penn'orth, massive fatigue is my major issue too and after 4 years of PMR 10mg is my nemesis , no matter how gentle the taper I hit an absolute wall of fatigue at 10mg, and have now been told by rheumatologist that, although too high to be in 'normal' range, they do consider my adrenals to be the cause. On the issue of your gentle day walking, don't forget that not only do you have PMR, after this long on reduced exercise your muscles will be very much weaker than they were at your previous peak, so no wonder slight inclines are difficult. I myself could once be active gardening all day, now a walk to the end of the path wipes me out.
Sorry if this sounds negative, I'm just trying to say that to me it seems very familiar. I would recommend trying to see a rheumatologist if you can, if only for peace of mind.
I'm sorry you are feeling like this. One thing I am doing alongside the Western medicine is acupuncture. I've found it extremely helpful on the fatigue side. I know it might it work for everyone but it's for me. I chose an acupuncturist who is part of the British Acupuncture Council so not a physio who does acupuncture as it is quite different treatment.
Sounds about normal for PMR to me, even on or off pred. I was just like you describe pre diagnosis and pre pred. I was in a highly pressured stressful job and I had to stop work because I was simply unable to go on. At the time, I was sleeping around 14 hours a day and still so exhausted that I wasn't engaging in life, hardly at all. I was eventually diagnosed with PMR and started pred in Feb 2023. Most of the time, the pain and stiffness is kept in check by the pred to manageable levels. However, the fatigue persists, on and off it is pretty debilitating, though I don't sleep quite as much as I did pre pred. But even with a good 8 hour sleep at night, I still need to sleep for a couple of hours in the day. No way could I hold down a job now. I tire easily with physical activity and my muscles get easily fatigued, when previously I was fit strong and active. I have to take a lot of care to pace myself and rest in between. Something like hoovering can leave me polaxed for the rest of the day. In the meantime, I have been tested to rule out any other factors that might cause the fatigue and I am left with the conclusion that it must be the PMR and unfortunately had to accept that this is my life now. It's hard, when there is so much that I would like to be doing. I can't help wondering that if I had had a diagnosis sooner (I think my PMR started mid 40s and I am now almost 66), and not persisted with such a demanding job, would I be in better shape now? But you can't live your life based on what ifs. Sorry if that doesn't sound very encouraging. All I would say is, that you might have a good hard think about what you need and how you can make your life better while you recover your health.
Thank you so much. I can relate 100% to what you have said & your journey.
It is so difficult to explain to folk who are in good health, especially on a day when you don't feel so bad but still know you are no where near your old self.
I've also noticed that on days when I am so exhausted, my face swells up & it takes most of the day to come back. Not sure if this is the ' moon face' that comes with Pred?
I've started to take photos of my face on bad days to show folk.
I do find it difficult to explain to my employer & at times my GP as to what is going on as symptoms fluctuate day to day.
Systems are not joined up at all and you are just left trying to join up the dots & trying to get everyone to understand. That in itself is draining and causes anxiety. Even more so when your job is at risk because of it all.
The moon face is more a chubbiness and it doesn't come and go. It usually gradually disappears as you reduce the dose of pred. Funnily enough, my face, hands and feet swell when I accidentally have something with wheat in. Although I am gluten intolerant, I suspect that I am actually allergic to wheat and it is a known allergen. The other symptoms that I had when I still ate wheat was muscular aches and pains. Have you ever done a food diary to see if anything correlates to the puffy face?
Hi Naim. I'm at 10.5 and in the process of trying to get to 10. Yesterday was good, until it wasn't. I overdid it by going for bloodwork ( walking from registration to where they draw the blood) and then walking about the grocery store; not to mention from the car and then back. Came home, crashed and then got up and did more stuff. Today wiped out. Also we're in a heat wave here in Nova Scotia which I cannot handle at the best of times. My moon face puffs up but not daily. Is it your diet perhaps? Too many carbs or too much sugar? It doesn't take much. This is when my moon rises. Lol. I also think that too much of either has a carryover effect. So if I'm naughty one day, it shows the next. Also with the fatigue. I tried to return to work a couple of times, but even half the hours was too much and now I'm fully retired. It was work from home sitting on my arse, but stressful. Having to say "I just have to go lay down" wasn't fair to my Supervisor, who was so very understanding. Here in Canada we have a Disability Tax Credit for which I qualified due to PMR and osteoporosis. So I'm presuming, after the doctor completed the application, they considered it to be a disability. Hugs to you while you journey along the PMR trail. There is an end, but PMR decides when.🌷
Having read your post I can empathise completely with your concerns.
I was diagnosed with PMR in 2019 at 61yrs of age.
I was teaching a nursery class in a primary school and loved every minute of my job. It was so much fun but very hard work and I initially had to take long term sick leave as I was unable to manage the physicall constraints that the job entailed.
With constant fatigue, no strength and low energy, even with 'reasonable adjustments' to my school hours & duties, I simply wasn't up to executing my job effectively.
I had 3 attempts at returning to work after long periods of sick leave, but despite every effort from my headteacher and his SLT to facilitate my return, I eventually had to accept that I wasn't going to succeed..... the effects of the PMR, together with the side effects of the steroids led to me being medically retired. I was completely devastated.
When my statutory sick pay had been exhausted, I was then able to claim Employment & Support Allowance, and after I was medically retired, this continued till I reached official retirement age and received my state pension.
I'm now 66yrs old, and although I've had some 'issues' over the past few years and I'm still on 2mgs of prednisolone, I'm beginning to see some light at the end of the tunnel.
PMR does eventually diminish in the majority of sufferers, with the average duration being 5 to 7yrs.
At the moment, I'm still experiencing extreme fatigue at times, and find walking up any kind of incline extremely exhausting. I've undergone substantial tests to rule out all other potential causes such as heart, thyroid, etc and this suggests that it's most likely to be my adrenals waking up!
Life is okay though, and I've now adjusted to my new normal. I'm seeing small improvements every day and looking forward to the future.
PMR, GCA & steroids, all contribute to exhaustion and fatigue, so hang on in there.
Important you rule out any other potential causes though!
When I was on prednisolone, I still felt 'hollowed out' and 'weak as a lamb'. My GP attributed this to the steroids. This link from the very reputable Mayo Clinic in the USA agrees:
"When taking corticosteroids by mouth for a longer term, you may experience: ...Fatigue, loss of appetite, nausea and muscle weakness...", alongside all the better known possible side effects.
You’re absolutely not talking rubbish! Constant ok-ness then crash but in my case I think it’s all down to my atrial fibrillation now. It’s got very complicated over a period of time but feeling better then knowing what’s coming is exhausting in itself.
"when I feel like i'm making progress & start to feel 'ok' ish, I follow up with a crash."
Which often is because you start to do a lot more when you start to feel good - and it is too much for you for one of a range of reasons. That is why pacing is so crucial with PMR/GCA. If you abuse it it bites back. Hard ...
I've had more explained to me in the last few weeks than i've had from NHS in last 10 months.
The knowledge i've gained helps me to add to the conversation with my GP and my emoloyer.
My next step is to find out, if this is as good as it gets for the short, medium & long term, while the PMR remains & the Pred intake keeps symptoms in check, then I need to have a proper discussion with my employer. Even if reasonable adjustments take place. How do I prevent or reduce the rollercoaster when my job is 'full on' with no hiding place?
To be honest - I doubt you can. The illness itself makes work hard and the pred on top makes it worse if you can't dictate your work patterns to some extent. I was freelance, working from home and I got tired - when you are told your hours, can't just go and lie down/rest when you need, it is many times more difficult.
100% right. Despite wanting to be fit and well to carry on, I fear my next battle will be trying to fight systems and those in positions of influence. Attempting to make them understand should 'The computer says....NO!'
Hi again. I have read at length the 2010 Equality disability act ( through necessity😩). See link below.
As I understand it, PMR is an autoimmune illness?
If I am correct then PMR is classed as a 'disability' and this is a protected charachteristic in the workplace. Autoimmune illness is listed in the act.
Therefore that should offer protection for employees.
The significant parts in the act talk about impairments, 'long term' and carrying out 'normal day to day activities.
All of which are described in detail.
Many of my symptoms and resulting recuring problems ( PMR, Pred & Adrenal) I believe meet criteria in the act.
I'd welcome any thoughts or second opinions.
It may help others who are of an age or status where we need to work due to financial necessity.
I am in no way offering advice, just hope this either helps or sparks a very useful thread.
I suggest you post this as a new thread - only I and DL will see it here so it won't spark any further discussion but probably will do in a new thread.
As I highlighted in my previous reply, my reading of it [when was looking for you] is that yes you do meet criteria-
This link -Definition of disability under the Equality Act 2010 - states
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
I can relate to most of what you write in your post and your replies. From the extreme fatigue to your frustration regarding your job situation. Been through it all during the last two and a half year.
Regarding the fatigue the autoimmune disease no doubt plays the major role, but from my experience prednisone is also a factor. I have been down at 7,5mg two times and both times the fatigue was less intense than on higher doses. Maybe your experience will be similar.
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