There have been a lot of posts recently about fatigue and managing it - so here, in one place, are 3 links about 4 articles you will hear us "oldies" going on about a lot. There is a good reason - it is probably the overwhelming problem in PMR - in more than one way.
Bookmark them - or bookmark this post so you can find it again.
I agree, fatigue (but of the 'deathly' variety) is arguably the worst of the many symptoms associated with PMR / the steroids. It's been the greatest and most consistent challenge on my 2 year journey, and only when feeling better - as I have recently - do you realise how severely it affects you, mentally and physically.
The fatigue is the absolute worst for me and I have no idea how much is PMR and how much is the prednisone, am on 15 tapering to 14 3/4 on slow method. What I am finding lately is that it is affecting me mentally a lot recently. I am not getting out as it is too much effort. i am sick of seeing Drs. as it seems to not help, and I do not find them very helpful or even empathetic. I would love to just sell our home and go into a retirement home, but my husband will not. However he is still able to get out and about and do what he wants. He does not worry much about the house or meals an I find it bothersome as neither are up to my standards. Keep saying to myself to stop complaining it could be worse, but it is not helping. Am feeling very defeated and unhappy that my senior years are so frustrating.
I'm certain that many of us can relate to the DF (Deathly Fatigue) issue. Just a thought - it might be an idea if you copy and paste your reply (to me above) as a New Post here? I'm sure you'll get lots of helpful and supportive replies
I KNOW HOW YOU FEEL . THIS IS A NEW WAY OF LIFE FOR ME AT THE AGE OF 79. I HAVE ALWAYS HAD HAD THE INABILITY TO REST DURING DAYTIME, I ALWAYS HAD SOME TYPE OF PROJECT I WANTED TO DO! THIS IS A NEW CHALLENGE AND I HAVE TO GET WITH THE PROGRAM!
How i feel daily drs aint helping me & my other half doesnt seem to be bothered in much even tho hes fit & healthy & i'd love to beable to do the things he does he acts like hes the ill one & just doesnt bother with what hoes on first i thought it was me & my illness getting him down but just realised how lazy he is & that i've done the full house wife mother & worked for 25 yrs now his turn to take over & cant be bothered everything has to be quick easy or he'l just sleep really annoying me that he's fit & healthy & im stuck with several health conditions that winds me up big time really want him wake up because its getting me down!
I understand how frustrating it can be when others show no empathy. Our symptoms may be attributed to getting old and cranky, and various unhelpful advice may be given. Many people have posted about the lack of willingness to learn how PMR affects us plus the effects of prednisone, etc.
No problem, just didn’t want you waiting for a reply…especially as the person you replied to doesn’t seem to be a regular, and certainly not a recent contributor … 😊
Hi all, I find it so incredible ll the talk about fatigue. I am 13 months post diagnosis and fatigue has never been a part of this for me, I consider myself very fortunate for 2 reasons, the lack of fatigue and also finally ignoring my primary about reducing and following DSNS I am fin ally approaching 5mg and could not have done it without all of you. I hope to continue down this road to Remission. 53 is way too young ☺
I think you are very lucky and very unusual. I don't have anything like the fatigue many people do - but then, I also don't expect to look after small grandchildren (mine are teenagers and live a long way away) or do my housework as well as most people perhaps do. But I do still get the brick wall variety when I've been on the go without proper respite for a few weeks or if I try to hurry. And I go to bed very early compared to many and it is still a struggle to get up at 9am!!
My husband would agree I am unusual, lol and I understand I am very fortunate. I am up by 6 every morning in bed between 10 and 11 . Although I do feel a little worn out when I do too much it is very temporary. I also believe that my pmr was triggered by environmental issues.... wish I knew for sure.
How interesting about the gorilla. He's in my house! Before he moved in, I had a very clean house. Now, he'll do whatever he can to delay or get in the way of cleaning floors, dusting furniture, bathrooms. I start these household chores only to be stopped by the large annoying gorilla! 🤔
Thank you so much for all the info..I am 67 had thyroid cancer 7 yrs ago so total thyrodoctomy ..recovered well was very fit and active untill Feb of this year and over summer just got worse now crippling pain ..been taking 400mg ibuprofen daily which worked well for me..the Dr put me on 15mg daily but after 6 days of pred didnt do much ..do you think I should have given it longer . Thanks all .
Hi, the usual range of dosage is around 15 - 25mg. However, some people need more pred and need longer than a couple of weeks to allow the inflammation to be under control. Usually it's 4 to 6weeks that people spend at the dose that helps control around 80% of symptoms before they start to reduce. You may be someone who needs 25mg or more for a while. 🌻
Probably not high enough a dose and certainly at that dose not long enough. Some people need up to a month at low doses. But if ibuprofen worked - it does make me wonder if it is PMR at all. Although theoretically NSAIDs work, in practice they rarely do.
Thanks especially for the "Spoon Theory" article. I understand it much better now than I would have 3 or 4 years ago before my disease switched from being occasional and sporadic with short episodes to being increasingly constant and more intense. I still am learning to accept that I can't do as much as I'd like to do, let alone as much as I used to do; I was always one who made the day long and the night short, to get "just one more thing" done, to derive satisfaction from how much I accomplished in a day. My body won't allow that, at least now (I still have hope), but my mind still tends to think the way it used to. The spoon theory was a good illustration for helping my mind to adjust.
Are they SURE it is PMR? That is a presentation I never come across in PMR itself - but it does happen with a form of inflammatory arthritis called palindromic rheumatism which comes and goes and eventually comes to stay. There is another member of the forum whose diagnosis at first was PMR but the consensus now is that it is PR.
Since my teens, I have had short-duration sporadic rheumatic issues (muscle pains; the first occurrences were in my butt and thigh, but they moved around to other parts of my body). From age 25 to about 40 years things were pretty quiet, but then I got a badly swollen large toe of my right foot which returned to normal after about a month. Several months later, the same thing happened to the large toe of my left foot, but that time it took months to return to normal. (These are called "sausage digits", and are a symptom of psoriatic arthritis.) My flares in this period were handled by taking indocin (a fairly strong NSAID) for two or three days. In the subsequent period I also developed the "all over" malaise of fibromyalgia and was diagnosed with it by my GP. I continued to have short-duration sporadic muscle flares for which I used indocin until age 59; I finally went to see a rheumatologist at that time who gave me the psoriatic arthritis diagnosis (hadn't heard of it before). I did not immediately start any treatment for it (I like to research things first), but soon after that visit I had a near heart attack that caused me to get checked out for cardiac problems and quickly led to a 5-way bypass. This was a great surprise because I've always had (and still have) a very low cholesterol reading. I now believe my cardiac blood vessel troubles were caused by the inflammation in my body all those years. A few months after the bypass, I contacted the rheumy again and he said to come back to him after I was fully recovered from the surgery. I went through a period of about 5 years without flares, which made me wonder whether the blood vessel blockages being removed somehow fixed my rheumatic troubles (wishful thinking!). At about age 65 I began having abnormal amounts of muscle pains the day after doing physical work (lifting and splitting firewood) and along with that abnormal amounts of tiredness. I also starting having a lot of chest wall (intracostal) pain, which the rheumy told my GP was caused by the psoriatic arthritis. At age 66 I realized that my symptoms no longer fit fibromyalgia nor psoriatic arthritis; my pains were now located between my shoulder blades and the base of my neck; searching the internet, I diagnosed myself with PMR and shared my thoughts with my GP, who agreed and put me on 20 mg of prednisone daily; after 2 or 3 days, my pains were gone. The GP sent me back to my old rheumy who lowered the prednisone dose to 15mg and then tapered me 2.5mg steps (12.5, 10) in 2-week periods, then 10, 9, 8, 7 . . . to ultimately be off the prednisone. When the pains returned in a mild way on 9mg, he immediately changed the periods to 4 weeks, but he never had me go back to a prior level. I finished the prednisone a year later in March and my pains, though not as bad as when I started, were still there. The rheumy didn't want to start me on MTX in March due to the COVID epidemic ramping up since I was able to effectively deal with the pain using kratom. In May I had a major flare (my worst ever; major pain, stiffness, and tiredness); in June the rheumy said he thought I should start the MTX since COVID levels had subsided and my pain had worsened. He also said at that time that he felt my current symptoms were due to PMR and not psoriatic arthritis. I declined starting MTX immediately because I wanted to research PMR more thoroughly, and that's when I found this forum.
I am soon to go back to rheumy to share what I've learned and understand why he wants to put me on MTX if he thinks my present problem is PMR. I think the answer will be that is because of the prior psoriatic arthritis diagnosis in my history. I don't doubt the PMR diagnosis (my present symptoms fit so well, plus the prednisone totally relieved my pain in 2-3 days). I also don't doubt the past psoriatic arthritis diagnosis, though it too is a diagnosis from observations (not blood markers). For both diseases, my blood markers are atypical (no elevated SED or CRP for PMR, no elevated SED but an elevated rheumatoid factor for psoriatic; with psoriatic, an elevated RF is unusual and would point towards rheumatoid arthritis, but I have none of the joint deformities or pains of RA). Perhaps I match the palindromic arthritis you mentioned (a new topic for me to research!).
I'm sorry for the long, detailed account of my history, but I feel I will get a better opinion from you if you are fully informed. I am very glad for any comments you will give. I've already learned so much here about PMR. At the same time, perhaps my case is a blend of multiple things and warrants a treatment different from that of classical PMR alone. I'm trying to find the right way to proceed.
I'm sick of my drs not listening to me i'm always fatigued having 10 hours sleep & it feels like i aint even slept one simple task at home tires me out also suffering with dry skin everywhere sometimes as well pain at the side of my eyes i get pain in my right side chest and other symptoms beginning to lose my will in life as waking up each day like i've got flu been on going for 3 months now & feel so weak that that a 100 yr old has probably got more energy levels than me crying to point where all i want now is comfort in knowing whats wrong with me cant keep feeling so rough struggling with all these health issues really feel let down by the drs
I've read the articles and can see that I need to make some changes. Unfortunately, these will also affect friends and family, of course, and explaining why I can't help with this or that, or need to cut down on an activity will be difficult for me.
It will also probably lead to having to pay for others to cut hedges, paint windows etc. years before I had anticipated. At this time of soaring inflation, we will need to make some crucial decisions.
One of the reasons I am very keen to remain where I am is that there are no hedges or lawns on my balcony and the wooden windows here don't have to be painted for years. When they do, it is a contractor anyway for many and done on behalf of the entire condominium.
Your immune system has stopped working correctly so your body is in effect fighting itself and making you feel rubbish.
With your illness, it causes your blood vessels to become inflamed so the blood doesn’t get around to feed your muscles and tendons in and around your shoulders, arms,hips, legs which results in stiffness, pain and fatigue.
The only way to control those symptoms is to take steroids until the illness goes into remission.
You might look fine and normal on the outside, but inside it’s a different matter altogether.!
As for paying other people to do things, it’s not just PMR or GCA, I’m well over GCA, but OA means I’m not able to do heavy work in garden…and 12 years older from when it started.
Do what you can….and agree it’s decision time on who or what you pay for!
I forgot to mention - the link is in DorsetLady's introductory post and also in the FAQs. Well worth making yourself familiar with the FAQs in general because most questions will find an answer there.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can you please explain yourself better in future! 
He's just £48 away from smashing his target *UPDATE* Thanks to you all he smashed his first target and is now well on his way to the £1k
Update on Exercise Post and Food for thought post
Movement for Good - Benefact Group
