I was diagnosed in August last year after suffering for months during the first lockdown . As I am only 51 going for mri scan and had a raft of blood tests to check it’s nothing else. Currently on 8mg pred. Thing I am struggling with is that I have little pain ( compared to pre pred!) however for the last week or so I am struggling with terrible fatigue. Just getting through the day is hard. I am so tired, everything is an effort. Is this normal? I didn’t have this degree of fatigue before.
Fatigue: I was diagnosed in August last year after... - PMRGCAuk
Welcome to the PMR club!
Yes, I’m afraid that fatigue, extreme fatigue, is pretty much par for the course. Like you, on pred I’m pretty much pain-free but incredibly tired.
I’m a little further on than you having been diagnosed, aged 53, in February this year. I’ve found the tiredness incredibly frustrating but am coming around to acceptance and planning.
I have built up my activity levels gradually, so can walk 5+ miles again but plan to spend a couple of hours with Netflix or a good book afterwards. I do a yoga practice or a Joe Wicks workout for ‘seniors’ each day, again increasing my commitment and engagement with the exercises as my stamina has increased. It should be noted that I have no other co-morbid conditions (apart from RA, the pain and inflammation of which is also being controlled by the pred) and that this is much less active than I was pre-PMR.
I’ve been off work since February and am worried about maintaining this level of physical well-being whilst expending lots of energy at work. Exercise is really important for my mental health so I have prioritised it in my recovery and ‘budget’ for it by planning that my husband or children will, for example, cook supper/do the shopping on the days when I think that I am likely to be tired.
My family have commented how strange it is that domestic chores seem to tire me disproportionately!
PMR is a marathon, not a sprint so take it easy, listen to your body, rest when you need to and try not to get too frustrated.
Thank you. I just couldn’t understand why the fatigue has come on just the last few weeks when I have managed to work full time up to now. I have been off work for 3 weeks and will have to get another note from the doctor as I can’t function enough to even feel safe driving!What an awful disease this is.
Sorry, I’ve just re-read your original post. I’m not quite sure why I thought that you were newly diagnosed.
Have you recently moved down to 8mg pred? It could be that you’re not quite ready to go that low? Or that it’s taking a long time for your body to get used to it.
It’s strange how fatigue affects some of us but not others. I’ve discovered that my uncle experienced a couple of bouts of PMR about 10 12 years ago. He says that once his pain was controlled he felt absolutely fine - no tiredness, no feeling bleurgh except if he tried to reduce the pred too quickly. He was able to carry on physical manual labour in estate management.
It’s strange isn’t it, just before Christmas I was down to 5 and feeling ok. Coping at work and not feeling tired, then I had a flare up and went back to 9 and just got to 8. I feel worse now than at any other point in my PMR journey.
I presume that, as you’ve been signed off, you’ve spoken to your GP? Do they have any useful insights? Perhaps you need to increase your pred again?
Are you sure that the tiredness is PMR? We get so focused on it and the pred side effects that we forget that correlation does not prove causation - and that the things that we are experiencing could have other causes. Given your age, could it be menopausal? Or something else completely?
In the absence of any other diagnosis, fatigue can be due to autoimmune activity or poor adrenal function. You are in the zone (approx 8-5mg) where the Pred dose is still a bit too high for the adrenal alert system to have noticed a shortfall in the artificial cortisol (Pred) but too low to see you through a day. You’re beginning to need some activity from the adrenal glands but you don’t have it yet. This can cause awful tiredness and inability to function on all levels. Usually, provided there are no disease symptoms, one has to keep reducing but very very slowly to avoid withdrawing the Pred faster than the adrenal glands can catch up. It can be a tricky time though and often they don’t tell you about this bit and some docs don’t even think it’s a thing.
Thank you. Having been a very active person it’s hard. I am also struggling with ringing in my ears which is making sleep and relaxing even harder!
My vertigo has increased dramatically last two weeks but have had one cataract done could be that rather than pred
I do understand, I was 54 and very active when GCA struck. Is the ringing new? GCA can affect the ears and cause tinnitus but Pred can also do this but the higher the dose usually the worse it is.
Hi. Tinnitus has been bothering me for ages! Also get a gushing sound in my ears. Today though is the worst I have felt, I needed to go to the shops and just didn’t feel safe driving. I am struggling with the new lazy and fatter version of me both physically and mentally!
Please don’t call yourself lazy, you are ill on a powerful medication that affects every part of you. The fatter bit can be remedied by a very low carbohydrate diet. When I first got diagnosed and put on 60mg Pred, my world fell apart but the one thing I wasn’t going to allow to happen was gain weight and getting diabetes. A very low carb diet did the trick and many here have found the same.
Snap I am feeling the same,very tired and no energy went back to work on sat,but found it very hard,am only doing 8 hrs for two days a week.
Are you doing a lot more which might explain fatigue which was not there until recently? Very few of us can behave as our ‘normal’ used to be. Can you experiment a bit with doing less? And see how you feel. Or being younger than many of us is it hard for you to reduce your load?Build in rest times if you can. Other possibility I guess is that your adrenal glands are struggling to wake up. Though I think for most people that happens at a lower dose. But I seem to remember PMRpro saying some people absorb less pred than others so get to adrenal struggles at a higher dose than others.... if that makes sense at all....
Thank you. I am actually doing less as I am off work and worked full time as a teacher. The fatigue really is debilitating and worrying. I am worried I have gca but am having a scan on Sunday so that should help with diagnosing 🤞
I’m a fellow teacher - it’s an exhausting enough job at the best of times! With Covid, the stresses and strains have increased hugely.
Take enough time to feel truly well before you attempt to return to work. Otherwise, from my reading there’s a very real risk of boom and bust.
Teaching is stressful, I don’t know about you but i also feel stressed when I’m off as I feel bad on the kids, especially my year 11 gcse groups. It’s a no win situation but I am slowly realising I have to put myself first.
It’s the old cliche - first put on your own oxygen.
So much is demanded and expected of us (we’re not alone, it’s the same with many other jobs) and we feel a constant need to put our pupils, and too often our colleagues, ahead of our own well-being.
I’m (self)justifying my on-going absence on the grounds that if I return too soon and too quickly I am likely to be off for longer overall, and being in and out -perhaps unpredictably - is likely to be more disruptive than a planned longer absence and a well thought through phased return. (That said, I’m desperate to go back - I’m a control freak and my deputy is doing a terrible job!).
Oh no, at least I’ve got good cover and am doing my year 11 lessons on teams live from home ( which itself is exhausting!). I am seriously considering dropping to 3 days from sept to try to manage this thing. It’s good to know I’m not alone.
Teaching online is awful!
I’ve also been considering reducing my hours but find job sharing incredibly stressful so I’m hanging on in the hopes that I can phase my return over this term and be nominally full-time over the summer holidays (for pay and pension reasons!). I’m in a slightly different position as I run a specialist unit in a mainstream school so have few teaching commitments.
Would you be able to negotiate a temporary change to your hours - say for a term or a year? That way, you have peace of mind, your SLT can plan ahead but, if you later feel able to increase your hours, you haven’t burnt your boats.
Good idea, I’m just hanging on to get blood test results and mri scan as rheumatologist ( who didn’t diagnose me the MSK speak last did!) doesn’t think I have PMR so I firstly need to know what exactly I am dealing with!
Hi Pippz20,I too teach.....a nursery class of 26 under 5's in a primary school. I was diagnosed in May 2019 and have been off sick for most of that time. I've had 2 attempts at returning to my job and only lasted half a term each time......fatigue and side effects of medication being the main reasons. I'm hoping to try one more time after the May half term break but I'm fully aware I may end up having to retire through ill health if it doesn't work out.
This is a condition that you can't just 'push through'...... you'll suffer consequences if you do. I've had a couple of flares and with each consecutive one, it's harder to taper the steroids, harder to combat side effects and those side effects re-emerge stronger and more troublesome than first time around. As stress and excess physical activity are the two main triggers for a flare for me, the school environment isn't the most helpful place to be!
I've learnt to put my health first as it's definitely not worth the consequences of not doing so! You've probably got some serious decisions/changes to consider so I wish you all the best and hope you manage to make the necessary adjustments that are right for you.
Thank you. Rude to ask but are you a similar age to me as the decisions have more impact financially the younger you are.
Not rude at all....I've just turned 63 and was diagnosed at 61. Yes.....the impact for you will be very different to the impact on me. I'm only 3yrs off retiring and my financial situation is stable. However, I still would be mindful of putting yourself first. It's so important, because if you don't you will definitely find it increasingly more difficult to manage the condition effectively. My school were very supportive.... phased returns, reduced working hours, tweaking of daily duties and alongside that, whilst on sick leave, full pay for 6mths and then half pay for 6mths. I was entitled to Employment Support Allowance also when on half pay and it's not means tested. There are other benefits you may be entitled to so it's worth exploring these options.
Hi Pippz20. I'm also a teacher, and that's one lesson (putting myself first) I learned very early on, and still stick to I'm afraid. I'm now 2 and a half years into my PMR.
Me too just the same. On 7/6.5
If it is PMR it is perfectly possibly that that foray down to 5mg caused the problem - I know it sounds crackers but originally I was put on a 6 week taper, 2 weeks each of 15/10/5 and stop. I had a minor miracle 6 hours after taking the first 15mg dose and 6 hours after missing the first 5mg dose I was as bad as I'd been before pred. I had been fine the whole time, 5mg was enough then. I flared badly until I got a doctor to give me more pred - the rheumatologist, who also didn't think it was PMR, had only given me enough until my follow-up after 6 weeks but I had had to wait longer for an appointment. I have struggled to contain the inflammation since and have had a few flares not due to the dose being too low - after every flare it is harder.
Why doesn't he think it is PMR? How did you respond to the starting dose? To have got to 5mg by xmas from August he must have put you on a break-neck reduction and I'm not in the least surprised you flared. You were going so fast you missed the dose you needed.
Thank you. Response to pred was amazing, within hours the pain had gone. He doesn’t think it’s PMR due my age and no inflammatories in bloods. Right now the pain is minimal but the fatigue is crippling. Worried it’s not PMR and something more sinister 😢
Over 50 is the age criterion and that doesn't mean you can't have it younger. I started with symptoms at 51. My blood markers also never rose beyond the normal range - but they were raised for me. My normal is low single figures and ESR ran at 16-18 for a while, no-one even twitched as 20 is the top of the range. However - up to about 1 in 5 patients have normal range readings and that is more common in younger patients.
To be fair - he is quite right to be sure it isn't one of the alternative causes and it is a mistake a lot of GPs tend to make.
I agree and am glad they are checking, it’s just frustrating that it’s 9 months down the line! I do have a good gp through so am lucky.
Hi I was 48 when all my pain started and now not long turned 50 and now at the moment getting tested for giant cell just waiting in results from mri and bloods it definitely is one rollercoaster ride we are on , the fatigue is awful I go a walk and my feet are so sore and I feel tired . I spent over 20 years traveling in America and came back to Glasgow 3 years and have this now talk about life changing.
Hope you get to the bottom of it 🤞
Thank you, I agree, life changing is the thing in more ways than one!Just waiting like you for bloods and have an mri on Sunday, once I know for certain what it is I can start to think about changing to working part time etc.
There is a form of anemia called "anemia of chronic disease". With this form of anemia there is enough iron available, the cells can't take the iron up and use it. I have this form of anemia, and while I did have a little low iron, iron supplements only help so much, I have also had iron infusions. The blood work still shows this type of anemia. I also have a blood disorder called MGUS, Monoclonal gammopathy of undetermined significance. I have a monoclonal protein in my blood that can lead to Multiple Myeloma, but can also stay harmless. I have had it over 10 years, and the numbers always stay under Myeloma. MGUS can elevated SED rate and cause anemia of chronic disease. So, in my case there are two illnesses, PMR/GCA and MGUS causing my anemia. But PMR/GCA can cause anemia of chronic disease on it's own. My oncologist found and diagnosed my form of anemia. He does a lot of blood testing my other doctors do not do. I suspect a lot of our fatigue is from having cells that do not take up iron in a normal manner. When I fatigue my husband points out that it sounds like my cells are not getting enough oxygen. I become short of breath easily. He may be correct. This may just be a facet of this illness we do not fully understand
Hi this is definitely worth looking into I’m on 30mg of pred right now and I have no energy and have a little anxiety feeling. Thank you
I'm just curious about the timing of when you started having no energy. I understand the anxiety level when on pred.
My energy level waned a year or two after pred was started on a daily basis. Did you have no energy after your first dose of pred or did that happen later on?
Hi it definitely got worse over a period of time I had been on 6 for a few months and tried going down to 5 felt exhausted nausea and felt worse and now getting tested for giant cell and on 30 mg now hopefully the bloods will show something.
Thank-you. Are you taking 30 mg just in case it is GCA? Your labs shouldn't show much in the way of inflammation at that dose. Being down to 6 mg is interesting to me because so many people seem to run into problems at that dose.
Your experience is important to me even though I have been dealing with things for a very long time. There is still plenty of things to learn. I'm no expert by any means.
I didn't have many problems with taking prednisone on a short term basis in my early days. Long term use, after PMR was diagnosed was another story.
My memory of my early years of PMR is similar in that everything seemed fine initially. When I couldn't taper off prednisone everything went pear shaped. I can't remember exactly what happened when.
Overwhelming fatigue and breathlessness gradually became a huge issue and dwarfed my problems with PMR although I did experience plenty of pain. I was never sure if it was PMR pain. I had infections and plenty of stress while still working for 10 years after being diagnosed with PMR. Then everything came crashing down and I retired at 62.
My rheumatologist still thinks that I'm relatively young and relatively healthy. Things are improving now that a way for me to get off prednisone has been found. I'm at a stage that I'm trying to remember and understand what happened to me.
Sorry to hear about your fatigue. Further to all the other comments about adrenals may I suggest you have a blood test for ferritin...that's your iron store. They check haemoglobin but ferritin levels can be depleted and not detected. It was a surprise to my rheumatologist that my iron was so depleted. It's really important. I feel so much better now that I'm taking ferrous glucognate.
The fatigue seems to be part of the PMR/GCA journey for many of us. I don't find it is always clear what has brought it on...but sometimes there seems to be some correlation with (minimal) exertion one day and extra fatigue a day or so later! I have always been very fit...but now limited to about 15 minutes of exertion (feeling very proud today of spending that time sweeping my garden this morning)...but I then have several hours (basically the rest of the day) recovering.Only do physical stuff on a day when my job (online) isn't super-demanding. Maybe manage my 15 minutes one day in three...sometimes one day in 10.
Gently, gently seems to be the only thing that works.
Perhaps one day in the future I will wake up and feel like my old self ...but at least I wake up pain free (I can't imagine life pre-prednisone).
With all best wishes for your journey.
Fatigue has been my main symptom ever since prednisone wiped out the pain within hours of my first dose.It fluctuates from day to day and week to week, but I don't think it's severity relates to my prednisone dose. So I think the prednisone deals with the pain and inflammation, but the fatigue is another part of the condition, not affected by the prednisone. It seems very reactive to any kind of stress, even stress that I am not really aware of. This is how it seems to me, after two years since diagnosis.
This does make everyday life difficult, and no way could I be working.
Thanks, I was ok for months on pred before the fatigue. I am due to go back to school after the Easter holidays however, if I don’t feel any better there is no way I can get through a day at school! I think that reluctantly I may need to take more time off. 😢
Hi Pippz20.I'm 63....was diagnosed 2yrs ago and I was teaching in a primary school with Nursery class. I was very fit and healthy.......gym every day, walks, etc. Since my PMR diagnosis and beginning steroid treatment, fatigue has been my constant companion. I'm afraid it's simply part of the condition and often compounded by long term use of steroids.
The fatigue increased (as did several of the side effects of pred) after I had my first flare and I'd had to increase my dose. Tapering down was much harder the second time around too.
You said that, "......reluctantly I may need to take more time off". I have had two attempts at returning to work and will have one third and final attempt after May half term break. I only managed half a term each time!!
You can't 'push through' this condition....there will be serious setbacks and consequences if you do. Nobody wants to feel defeated by the fatigue but you really have to listen to your body, accept your new limitations and make the necessary adjustments to manage the fatigue. In the majority of people, this condition eventually burns itself out and life will VERY slowly begin to return to some kind of normal again, but it can be a long journey, only made worse by ignoring your individual 'needs'. Rest and patience are the key!
Lots of good advice from everyone here.
Try not to get too despondent .....I have worked very hard at learning to 'read' my body.... how I feel can change on almost a daily basis!
I've gone from only being able to manage a short, daily 15min walk around our meadow 18mths ago to an hour long walk across the countryside now. I have two rests en route (involves a 'lean' on two bridges I have to cross for literally just a couple of minutes) and feel a real sense of progress on completion. However, some days I recognise that a longer walk will be too much for me and adjust my route accordingly. When this occurs, I don't feel disappointed or that I've failed in any way, I just accept that this is how it is and feel gratitude for simply being able to get out for a walk..... however long....or short!
Once you can accept these changes you'll find you can deal much more effectively with your condition and you'll begin to make those difficult and more definitive decisions with much greater ease.......all of which will prove to be of much greater benefit to you.
Thank you, I will have to adjust, yesterday was a better day but this morning I have got up and it feels like the middle of the night, I feel spaced out and like I haven’t been to sleep. A shorter walk for the dog this morning! I am concerned about work, as I am only 51 I still have kids at home and a mortgage to pay. Also the impact on my pension is an issue. I have accepted that I will not be able to return to work after Easter but am worried about longer term.
I understand completely and obviously I don't have many of your concerns and worries at 63yrs of age. Don't forget to look into the benefits you'd be eligible for though....(eg. employment support allowance-not means-tested)
You just need to find a balance or compromise that includes the right combination of medication to enable you to function adequately and an adapted regime at work that supports your health issues. That might be reduced hours, different duties, etc. Unless you do though, you'll find managing your daily life very challenging. I wish you all the best and I know you'll work it all out.
"So I think the prednisone deals with the pain and inflammation, but the fatigue is another part of the condition, not affected by the prednisone. It seems very reactive to any kind of stress, even stress that I am not really aware of. This is how it seems to me, after two years since diagnosis."
I'm almost certain this relates to how HPA axis is supposed to function. It is such a complicated system and many mechanisms are involved.
During stress, the hypothalamic-pituitary-adrenal (HPA) axis is activated. Hypothalamic neurons within the HPA axis secrete corticotropin-releasing hormone (CRH) that causes the release of adrenocorticotrophic hormone (ACTH) from the pituitary. The ACTH causes the adrenal gland to secrete cortisol (a stress hormone). This chain reaction happens instantly and every system in the body responds accordingly.
I have been off prednisone for about a year. I still have a baseline level of fatigue. Fortunately, the fatigue is no longer overwhelming.
Some of my fatigue is from being deconditioned and overweight but I'm able to tolerate more exercise without causing a flare of PMR. My recovery time after exercise is faster. I no longer worry about taking it easy and I try to push myself.
I used to enjoy exercise and I enjoyed pushing myself to the limit. Running a marathon was something I've always wanted to do except my knees told me it wasn't a good idea. A 100 mile bicycle ride was doable. That is inconceivable now but it wasn't less than 10 years ago.
I took prednisone daily for more than 12 years. I used to get energized by more prednisone but I believe that was before my HPA axis was disrupted. I believe the HPA axis is more like the accelerator of a car that needs to be "regulated" depending on driving conditions. I think prednisone disrupts how the HPA system is regulated and the entire body becomes sluggish or even worse "crashes".
I have several hormone levels that are abnormal --- cortisol, insulin and testosterone. My endocrinologist is working on these problems and says the imbalances were likely caused by long term prednisone use.
These are just my thoughts on the subject. It is so hard to know what is actually going on. It seems that hormone levels are a huge factor and long term pred use seems to cause hormone levels to be out of whack. Even short term corticosteroid use has a profound effect on hormones.
Hi Pippz20, I’m 74, male and am quite fit or at least used to be. I have PMR since June 2017. I am off prednisolone 22 months now. Yeah:::FATIGUE is my biggest problem. It was worse while I was on prednisolone. I take cold showers the colder the better which give me a great boost of energy and sense of well being and temporary relief from fatigue. I posted my full story last December, although I am unable to find it so I may have to re post it. I wish you all the best in your efforts to conquer this debilitating condition. There are some great people on this forum who are dedicated to helping those with PMR. My hat goes off to them.
I have felt differently on the same dose e.g. felt better at 22.5 than at 27.5 and vice versa, depends on how active my disease it underneath the meds.
Hi Pippz20. I can empathise with you. You are not alone I suffer from fatigue similar to you. I am 78 and was diagnosed with PMR in November 2020. I was put on 30mg pred and now I am down to 15mg a day. My pain disappeared within days of starting pred and thankfully I am still pain free but I do suffer from chronic fatigue. I was reasonably fit until I got hit by PMR, I played golf and used to walk the course 3 times a week, now I have had to stop playing and feel so tired that I find I have difficulty doing the least little chore. I also find I am unsteady on my feet on times. Tiredness and feeling spaced out most days are some of the side effects of PMR and its medication ie pred. (this is my experience so far) I think it's essential to slow down and accept that PMR is a life changing complaint until your body as had time to heal itself whilst the pred. suppresses the pain. I am no expert but this has been my experience since I was diagnosed.Best of luck.
Hi there, sorry if things are difficult for you. I was diagnosed in my 50s too. I have always said that the fatigue for me (post pred)was less than the fatigue. I raised it to several medical professionals and asked for a second opinion. I attended a specialist university hospital and they found that as well as PMR/GCA that I also had fibromyalgia. This explained the touch soreness all over and the profound fatigue. I'm still not convinced that part of it is not ME. The symptoms are so similar. The bottom line is that it is very difficult to work out the precise nature of all of the symptoms. Different medical professionals will tell you different things. From my experience you really have to be your own health advocate, detective, cheerleader. Wishing you luck. The fatigue has been more life changing for me than any of the symptoms.
I agree if you mean ... "the fatigue (pain?) for me (post pred)was less than the fatigue."
The deathly fatigue was worse for me. I don't think it had too much to do with PMR because I was still going strong when PMR hit. My biggest problem when PMR struck was that I couldn't lift my arms. The lower part of my body hurt but that didn't prevent me from walking. After some prednisone, I was higher than a kite and I had energy to spare.
It took a couple years but eventually the slightest exertion left me breathless and tired. I couldn't walk up a slight incline for more than a few meters without needing to rest. Soon thereafter, I could hardly walk at all without becoming exhausted.
I didn't become sedentary because of pain so I think whatever fatigue was caused by PMR pain had to be minimal. In theory, prednisone was controlling inflammation so the fatigue wasn't caused by inflammation.
Pain does have way of wearing a person down so it is like you say, "it is very difficult to work out the precise nature of all of the symptoms." However, I think it had something to do with my HPA axis and endogenous cortisol. I'm convinced that particular system and the adrenals shouldn't be tampered with unless it is only for a short period of time. I can especially say that now that I'm off prednisone and feeling better. My endocrinologist says it will take time to recover but my rheumatologist is very pleased.
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