I have mentioned before how I am struggling with fatigue but I read posts from people such as TonCh who started his Pred journey after me but is back to running and winning races, whilst I (an erstwhile avid walker) can barely make it to the top of the road with the dog. Although Prednisolone has taken away my pain (and because of mixing my tablets - part plain and part gastro coated) I dont even get the breakthrough early morning pain I am and have since diagnosis suffered with total fatigue. I know that the Pred only tackles the inflammation and PMR rumbles away still in the background but how can it be that for some people Prednisolone can give them an energy boost whilst for others like me it totally wipes them out? I am concerned as to whether this is my lot until my PMR goes into remission and that could be a way into the future.
Still confused about fatigue: I have mentioned... - PMRGCAuk
Still confused about fatigue
I think the energy boost just happens at the beginning. Autoimmune diseases cause fatigue. Rumour has it that men have an easier ride with this for some reason. You are only in a race with yourself here. Calm and patience here, it must help that you come from a fit base. 💗
You can't compare yourself in that way. Everyone has their own journey and as PMR pro points out there may well be different forms of PMR. Some men do seem to have an easier time with PMR and recover quicker so it pointless thinking about what someone else can and can't do. You will have your own journey with PMR and pred. You need to just take it day by day. I have been over 3yrs into this PMR and still have periods of a couple of weeks when the fatigue huts me if I don't pace myself. It's a long game we are playing and if we eat right, pace ourselves and don't reduce too quickly then our level of activity can be sustained. Don't look ahead it's not good for us to do that. I hope you feel better about this tomorrow and get to enjoy your walk with your dog. I tend to sit then walk, sit then walk. More sitting some days but that's fine...a field and a ball and the dog is happy and I get fresh air.🌻
Hi Jaycee
Please do not compare yourself to anyone on this journey, some people have other Medical Conditions as well as PMR
We had a Post last year & it was about Swimming in your Own Lane, l’ll see if l can find it & forward it on to you.
Pred effects people differently, for example if I’m on high doses l become an over excited version of myself, when l had to take Dexamethasone on top of the Pred l was totally over the top, l never slept much either!
I’m glad your not now in any pain but the fatigue is what is so hard to deal with. What dose are you on & for how long? Are you trying to return to ‘normal life’ or resting more to help your body recover?
Wishing you well 🌷
Kind Regards
MrsN
It was longer ago than l thought but Thank You bunnymom
healthunlocked.com/pmrgcauk...
I find I still have to remind myself of my own post. Every thing about PMR is so individual and vague it's hard to know if we are"doing all we can" but I've pretty much given up on that way of thinking and assume I'm doing my best and soldier on for the long haul.
No ones journey is the same. When people post on the forum saying they are running just a few weeks after starting pred I consider it foolish. A slow method is the way to go. Fatigue effects most of us at sometime. Things do get better.
Thank you for your replies. I know PMR is different for everyone. I guess I am just frustrated that I can get up each morning with no pain but feel from the start totally wiped out. I do pace myself but at the moment Im struggling.... I would love to just feel 'normal' again but at least I am free from all the pain and stiffness and for that I am truly thankful.
A lot of it is what we expect from ourselves, too. I think one of the first things we need to do is recognise we have a serious systemic illness and although for some the early dose of pred can be a real boost (it certainly was for me) eventually many, not all, find that early energy was a bit of an illusion. Pacing is the key, recognising the moment when you've done just a little too much, and learning how to stop just before you get to that point and take time to recover. We also have our own priorities. If yours is to become more athletic again, then you may have to let something else go. I personally have found that PMR gives me an excuse not to feel guilty when I don't keep a spotless home, but can instead read a book or do something else.
Hi
Know that feeling at present my fatigue is worse at present then is has been in the nearly 4 years I have had PMR and I had to go back to 15 preds a day.
Hang in thier take one day at a time you will get thier ,but for some it takes longer .
Rest when you can and dont feel guilty about what you cant do .
Sending you a big hug
Oh how I know that longing to feel 'normal' again! After 2 1/2 years will it ever happen? I still live in hope. Best of luck hope you get there.
The only thing you can do is listen to your body and how it reacts with pmr and the meds. Each person is different and each case of pmr has its own intensities which requires its own “Journey”. Do what you need to do to get better and use others’ experiences as a guideline to your health. Don’t beat yourself up by comparing others. As others have pmr for life. Believe it or not, but there may be people on the internet who could be exaggerating. So take things you read as getting general knowledge, but listen to the distinct messages your body is telling. This is what I’ve learned in my early journey wit pmr
I'm with you jaycee444. I read those posts from people who run and participate in strenuous activities and compare their achievements with dismay to my weekly 10-minute walk to the library with bench stops on the way, which is about as much effort as I can manage most of the time. I feel I've suffered a (so far) 2-year and 4-month bout of flu which shows no sign of abating...
You are doing the walk to the library and hopefully enjoying the view of the World going by as you sit on the bench ( instead of feeling you are having an enforced rest ) that's winning to me. Gold star xx
Thank you. I did the walk this morning and excelled myself by walking back too instead of taking the bus a couple of stops. That makes me proud!
Brilliant!🥇
🌟🌟🌟🌟🌟
You see some days you do even better and you definitely deserve the gold stars!
Enjoy your new book and a nice sit down too xx
I've never had the energy boost from pred either - ever! Though to be fair I don't think I have ever had to nap during the day to get through and usually I sleep well (we won;t go into last night though ...)
Many drugs affect different people differently - and PMR is different for different people too, as you say you know. I don't have the desperate fatigue as long as I am on only pred but when I tried methotrexate last year it was an effort to get up and go to the next room! Maybe it would have resolved had I kept going, drug effects often do improve after a month or two but I couldn't face waiting. The other question is often - what other medication are you using? Sometimes the interactions are different than their effect alone.
Everyone may offer suggestions to cope and listen to them and take what works for you. But never ever compare yourself to any one else in terms of what you can do (or not do) or time on pred, dose of pred or any other form of "progress" and feel you should be the same. We do all get there in the end - whether we travel down the motorway in our big car, hogging the middle lane, or use the by-roads with our Fiat Punto.
Hi PMR Pro,
Thank you for all you do on this marvellous site. I have been on MTX for nearly 3 months and, so far, it doesn't seem to be helping at all. I feel much more tired than I did when I was just on pred and wondered if it was the MTX? From the sound of it you would probably agree?
Louisa, are you tired all the time or the days following the Methotrexate? Do you take Folic Acid & have regular MXT Blood Tests?
All the time Mrs N and yes I am taking folic acid a couple of days after my weekly MTX dose and yes, I am having blood tests.
Thank you for your interest!
I used to have Folic Acid on six days & MXT on 7th it does make some people very, very tired & can take quite a time to adjust to it. I was always wiped out the following day so l always kept that day clear but gradually it improved until l almost didn’t notice it all.
I’m sure PMRPro will be along shortly, l just thought l’d offer my experience in the meantime.
Kind Regards
MrsN
Thanks Mrs N the people on this forum are so kind and caring!
XXX
It could well be.
Had it just been one day of feeling awful I would have persisted but it wasn't and even with more folic acid it was no different. But there were other problems - I ached all over and that was the MTX and I suspected that wouldn't go away. Positive: no nausea!!!!
I've been on methotrexate for 19 months now and I'm certainly dog-tired most of the time, but so I was before I started taking it. I think it has helped me to reduce pred without further flares. I take folic acid 5 days every week.
What I’ve learned from this forum that whilst there are many common themes each one of us is truly individual and our PMR journeys are different. Mine is six years so far and there were many days when I felt so fatigued but very gradually gaining strength and getting my mojo back. As others have said listen to your body, take small steps and rest. Be kind to yourself and enjoy small victories. I hope that you gradually begin to feel better jayceee444 but this PMR won’t be hurried - mores the pity! Take care.
Hi Jaycee, I’m four years taking prednisolone for PMR and have had a comparatively easy time but remember the months I could only walk a little way without having to stop. Feeling fine/normal most of the time now but certainly having payback the last couple of days for overdoing (nice/happy) things again recently. Ive become quite selfish about what I do or don’t do and I know Im lucky to have that luxury but please don’t try to do everything you did before. Try to pick the nice things and the few things you really have to do. The fatigue is most frustrating I agree, definitely improves but wish it would hurry up and go for all of us.
All good wishes.
Hi Jaycee ,
There's nothing much I can add to all the above replies and advice except to reiterate that we are all individual and that everyone's PMR journey is different. I too feel envious of those who seem to have lots of energy and are down to 5 mgs after 18 months.
I am in my third year now and still struggling to come down off 10 Mgs.
I was saying to my husband today that, whilst I adjust the pred to deal with the aches and pains (knowing that to let the inflammation build up is no good) it is the fatigue that gets me down. My days are so short.....
I am in Tasmania so we are in winter here; I get up somewhere between 7 & 8 and have a burst of energy for around 3 hours. Then the fatigue hits me around 11 and I have to rest before heading off to our work (we perform a play for tourists in Hobart). Home around 1.30 and then it's straight to bed with my lunch and a sleep for at least an hour. On a good day I might potter out to the garden for a bit but generally am too tired to do much else at all. Then the usual TV or reading in the evening and it's bed again (and how i look forward to that - sad really). At the start, when I was on 20 mgs, I was like a budgie on trill, cleared out sheds, dug the garden etc etc but it didn't last.
My brother who lives in the UK, also has PMR and his mantra is "Rest, Rest & Rest". Good advice I think......
All the best on your own journey. Just knowing that we are all here to help each other is so wonderful.
I have felt like you on and off over the years, but now realise things are very different for each of us....how we react to meds, energy etc….it`s like when we get the flu...some people get over it quickly, some people take several weeks....and when I got shingles, for once I was lucky it was mild, but not for everyone it isn`t......
We soldier on with our own battle, but luckily we have this forum to help us on our way....I have had very mixed days with energy this week, able to go to my sons for the day, but other days just lazing around, hard but necessary.....
Keep us posted...
I think fatigue is my issue as well. I have learned to say “NO” to many things. I only attend the most important events and only stay 1 hour or so. I do not entertain. No major cooking. (Example: keep rotisserie chicken, vegetables, fruit, cheese.) Will not drive 2000 miles to the beach for the winter as I usually do. Just minor adjustments.....naps have become a necessity.
Thank you all so much for your comments. Its really comforting to know that I am not alone on this journey and I can always shout if I need some advice.
Don’t know but I was of the wipeout group previously very active at 54.i only have GCA and still got it but have noticed how slowly my muscles are building up still after nearly 2.5 years now at 2mg. However, building up they are so that is positive.
Thank you all, and Jaycee, I am at the beginning of the Pred, and your post summed up how I was feeling, just a bit (lot) inadequate. So thank you all for your reassurance and help. Don’t know what I’d do without this forum.
Never feel inadequate about PMR/GCA or any illness. I know my fatigue predates pred and is definitely the most persistent symptom of PMR for me. It does fluctuate but mainly based on what's going on emotionally or physically. I had a busy day yesterday and can feel that deep unnatural tiredness permeating my mind and muscles. If I am going to push things a bit I choose Friday as then I rest almost totally on the weekend. If I don't feel too bad over the weekend I will potter. I am entering my 4th year post diagnosis, poss up to 6th year of PMR and at 6mg with a dmard thrown in. Most members are sensitive to the fact that others may struggle and when people share an achievement are genuinely pleased for them, especially if we have travelled the journey with them on the forum. Those stories give us hope and confidence that we can get there too. 🤸💜
Thanks you Poopadoop, I am so happy for others to be able to achieve
Even little goals, I know it’s so exciting, after so many years of being told exercise will help, and push through the pain, now it feels so very very strange know I cannot and shouldn’t. Just have to get used to the thought it’s not my fault, oh I’m such a daft soandso.
I don't think you are so daft 😉 Dont forget despite having symptoms for so long it's only a few weeks into your official diagnosis and treatment. I have some family members who think I just aren't trying hard enough. But others have seen me at my worst and how I have improved in the past few years re PMR. Have said elsewhere...first PMR family Xmas....bed at 7 to 8pm, lots of tears. 2nd PMR Xmas, no tears and bed at 9 to 10pm. 3rd Xmas....bed at 10pm but managed 12.05am on New year's Eve for the first time. So whilst I have days when I feel I am making little progress it's there that I am. You don't have enough data to see your distance travelled yet. 😊
Thank you Poopadoop, I know,just at the beginning after diagnosis,and the pain has improved, and I am so very happy about that. It’s so good to hear that,in time, I may be at able to give such good advice to othersx
Oh, yes, family not understanding . Not all, but a few. Their judgements raise inner doubts that I “should “ be better. I recently shared the “ spoon theory “ with some of them. That’s the best analogy. Am always reassured that the wonderful people on this forum understand even if others don’t. 🤗
So glad you brought this up. I have felt the inadequacy, like if I’d just push myself more, life would be what it was. Saying to myself—— “ look what they’re doing “. The energy and muscles just aren’t there and am so fearful of a flare. Am reassured by the responses
here, that I am doing what I (individually )can. I have to apply that to the amount of pred doses too. Tell myself, all need different doses at different times. Thx for sharing. You helped me by doing so.
Before my diagnosis I spent a year thinking I simply needed to get more fit, and was pushing myself and trying new exercises, all in an effort to rid myself of the increasing disability the pain was causing. Some of these nearly crippled me. Once I started pred it was such a relief to be able to move without pain again that I basically jumped in and started doing everything I hadn't been able to do for a while. My husband said I was like the Energizer bunny, but I think it was just the contrast between months of increasing disability and my sudden "cure" - which we all know now was not a cure, but I didn't understand that at the beginning. I thought I was cured. Now that I know I'm in this for the long haul and have accepted it I'm actually more content. It's okay not to vacuum the floor if your walk has made you too tired. But the walk has to be the priority. PMR can give you the wonderful gift of making it okay to look after yourself first.
I think many of us share our experiences not so much to tell others, look what I can do, you can too, but to say, this is my experience, if it helps you, that's good, but don't believe you are like me, because we are all different. My description of my experience is adding to our collective knowledge of what this idiosyncratic disease is all about. At one end we have our athletic men whose priority is to maintain fitness, at the other people who have several medical conditions all of which conspire to make the PMR experience more difficult, and then people in the middle, where I put myself quite squarely, who are simply happy to have found relief from the pain but have to accept that life can no longer continue as it used to.
My not understanding pmr , I had lots of “ should be s “, and misconceptions, when I first started reading the posts on here, ie, this is what to expect once you start pred. Did not realize for a while how individually pmr manifested itself and plays out. I do need reminding.
Me to Ipadmom, it’s a very steep learning curve, one we didn’t expect, but we will get there. X
So nice to have company in the learning as well. We do thankfully , have willing people to guide us and I hope you’ll add your experiences with pmr. My best to you. 🤗
I think applying to pred dose is important. Pred isn't the issue...PMR/GCA is. The pred allows us to control the symptoms that inflammation allows to poke us. The longer it pokes us without pred response....the stronger the elbow poke in the muscle and energy level gets. Simples..🐒 (sorry only had a monkey ...no meerkat).
Oh Ipadmon, I know what you mean, we just have to alter our mindset, and thanks to all these lovely people, we will.
Best wishes to you.
I, too, suffer the fatigue problem, but no pain. Last week I had my routine doctor appointment. He tried to explore other factors contributing to the problem. In doing so , he noted on my last 2, 6 months apart, blood work reports that my iron level had gone down. He had not noticed it in the last report because was not in the "to be concerned" column. However, he thought, for me, it could be significant, so I am taking an iron pill for next 4 weeks then going to have done blood analysis done again. In the meantime I am monitoring the fatigue
You are certainly not alone. Just wondering myself will i ever feel civilised. I agree, the fatigue, certainly for me us just everpowering and the reason i had to give up work. I too wonder when it will change. So not that helps, but you have plenty of company.
Sweetie, everybody is different just like each handful of Jellybeans you take from a bag.
People's progress depends on how severe the PMR is when it begins , how well their body can respond to treatment , age , gender , past medical history , and, if they also have to cope with other health issues or crisis at home alongside the PMR itself.
Believe me , there will be people out there who might read your story some days and wish they were doing as well as you.
As everyone is saying, don't judge your own progress on that of others , good or bad , and don't feel guilty , or that you have to try harder and are doing something wrong , when you read stories from people showing instant recovery or success like TonCH.
These people are the exception , seldom in the rule , and , often they are new to the condition and have not got fully adjusted to it yet themselves so their posts are often based on trying to " push the goalposts " before they reach their own level of balance and acceptance of the illness they now suffer from .
If you got up today , did three simple small things that made you happy , felt you could cope with your pain , and took time to smile , you are doing well and deserve a good star in my book.
With PMR , Like in the old fable , it's the sensible tortoise that wins the race not the highly strung hare XXX😘😘😘
Yes, so agree with Blearyeyed! If you manage 3 simple things that make you happy every day this is sound philosophy. In my case it is merely 2 things every day because at present I'm having a lot of fatigue. But if I've managed my two things it puts a smile on my face. 'I did it' I tell myself'. Today, I managed 15 minutes of Tai Chi- and I'm still smiling about it.
I use the " To Do" list that my Mother in Law always writes each night , that I used to laugh at and now swear by !
1. Wake up
2. Get up
3. Go to the bathroom
4. Take medication
5. Have breakfast
So basically , I can say I have managed to do more than three things before breakfast !!!
That gives me a giggle and mental boost every morning , even on the days I can't manage to get to number 6 .... get dressed!😋😁😂😂😂😘
🌟🌟🌟🌟🌟 Bravo on the Tai Chi I'm smiling for you !!😘
Tai Chi for Beginners on my computer with me following You Tube instruction. Very easy! And you can do it in your pyjamas...
In fact you could probably get away with wearing your PJ's to an actual class , the en trend sportswear for Tai Chi is pretty much the same , unless you are wearing the ones with sleepying bunnies on like those that I'm about to put on !😋😂😂😂
Just to make you feel even better I tried that and really paid for it the next day. We all follow such different paths it's a wonder it can be identified as the same condition.
Too true xxx
A link posted on the thread about salt intake led me to another interesting item which I think may be relevant here:
Hi jaycee444
Just to reiterate what others have said - everyone is different.
I was just like HeronNS as she’s described below. On starting pred I encountered an immediate burst of energy coupled with massive relief from months of pain. I was bouncing up mountains again after a gap of months. I thought, 'yay, this is going to be a breeze'. I was so wrong. Like others eventually reality kicked in. I didn’t really understand what was going on until I found this forum ( I was almost a year in before I did). Difficulty in tapering at lower levels with some flares along the way. Fatigue and exhaustion are my main problems now, 15 months in.
I’ve managed to start gentle hill walking again but having learnt about pacing from here I pick my walks and companions extremely carefully and make sure I have at least a day afterwards to recover. I don’t push myself as before (I can’t) but choose easy walks which have nice views or whatever. I still gain a lot from exercising, views and wildlife and breathing fresh air even if I’m not going as far or as high as I used to. I think it's easier to make progress when you finally accept you have a serious systemic illness that you can’t 'beat' but you can learn to live with and that it will take as long as it takes to go. It took me a long time to accept that but I think I’m getting there now. Some people start improving more slowly and don’t have the immediate energy boost (and drop) but progress on a steady basis.
Another thing occurred to me a couple of days ago. As well as everyone being affected differently by PMR, people have different personalities too. So, some people might be more likely to post when everything is apparently going well and not when it isn’t so perhaps give a falsely optimistic impression of their progress (or are perhaps even unconsciously persuading themselves that they are in control of the disease) whereas others may be more likely to post when things are bad and they are feeling down. Don’t know - just a thought. 🤔
But anyway don’t compare yourself with others. Different ages, levels of health and fitness pre PMR, gender, lifestyles, personalities and priorities all come into it too. Good luck.
Yes thanks for that advice Highlandtiger. Certainly I put myself out there each day to try and walk a little especially for the sake of my dog although he is now into late middle age so I guess to some degree thats a good thing. As for pacing myself I find I have no option really. I do bits then rest and start again. If I do the essential things in the morning I can usually manage a short walk in the afternoon but I am barely functional after that. I really do need that walk though for my own wellbeing as walking has always played a big part in my life and for me personally has been a stressbuster. I do accept that life for a (long) while may be very very different for me. I am happy to be pain free but by no means is this a life I want for myself. As someone who always has run up the stairs and loved not having enough hours in the day I do find it difficult (as do so many others) to be reduced to someone with lead legs who constantly has to take naps......
Nevertheless .....its onwards and upwards and I am still thankful for what I DO have and eternally grateful for a website where I can vent my frustration and folks will understand.
Some of my friends look at me with my nicely rounded cheeks and tell me how well I am looking. I'm sure they will never understand what is going on in the background even though I try to explain. Think I'm fast getting a reputation as a party pooper for always leaving early lol ...
You'll find the gorilla story here (and other very useful posts).
I knew you were a walker like me and fully understand that it’s really hard to lose that aspect of life both in terms of simple enjoyment but also for stress relief. After my initial pred energy boost it fell away pretty quickly so I’ve not been up to doing much walking at all until recently and even that is limited. Like you I’ve always been very active. I never ever took naps. Now I have a lie down/nap most days. I was really just trying to say that there is hope and some light at the end of the tunnel. It’s just you have to go at PMR's speed not yours. That’s been very hard for me to accept and imagine it will be for you too but if there’s one thing I’ve learned from this site it is that acceptance is the key. None of us wanted to be here but here we all are. I’ve accepted that I’ll be on pred for a considerable length of time now but I’m not scared of that any more. This time last year, a few months in, I thought I’d be off it in a few months and would have been absolutely horrified to know how long I’ll be taking it, not to mention depressed and stressed about it too. But perceptions change as you find out more about the disease, mostly from the experienced forum members on here. I've found their advice very reassuring.
Someone posted about thinking about having PMR being like living with a gorilla (if you've not seen it I can try and find it for you - basically you can’t beat it by fighting it, or ignoring it as it will still win so you have to learn to live with it - but it’s much funnier and better written than that) and that analogy just clicked with me and suddenly things made sense (likewise Blearyeyed's recent analogy about how out of control PMR is like a high maintenance friend who goes off to a nightclub and is sick in your handbag 🤢😂). So while it goes against the grain not pushing yourself it’s definitely the way to go. I have some weeks where I’m not too bad and others where I can barely move off the couch, the fatigue is so bad, but I’ve given up fighting and just go with my body now and just do what I really feel is important. And the other thing is to accept when things aren’t improving as fast as you’d anticipated and being honest with yourself. Saying to yourself that the leg pains are just because you overdid things a bit and not because you’ve tapered too low doesn’t help when deep inside you know you’ve reduced too far. I’ve been at a virtual standstill in terms of tapering for 7 months now but I’m not letting it stress me as it would have done last year. And yes, I know the 'well you’re looking really well' comments too. I’ve just given up trying to explain and generally just say 'thanks' or 'oh it’s the steroids' and move the conversation on.....
I so agree with what you've all been saying. Fatigue is the worst thing about this autoimmune disease. I had/have GCA ...I used to be a climber and mountain walker but now I am truly grateful for being able to walk at all. I was on high dose prednisone reducing over 2 1/2 years which cured all my pains (temporarily! ) but since then have had 4 joint replacements and each has demanded 6-8 weeks painful recovery. My hubby is always comparing himself and us with other friends who are energetic. ..off on longhaul hols etc. I just say. ...I can't do that any more.
I'm so grateful for the short walks into can do the beautiful countryside etc.
One practical thing....I invested in a cheap plastic stick which has a flip down seat. ....so you can walk then rest then get going again.
Thanks everyone for understanding!
There are nonsteroidal infusions and medicines . I had the long version of PMR ( not cured) and many complicating health challenges~ back fractures, IBS, chronic sinusitis with throat clearing for 2 years~, mvp, gall bladder, silent reflex. I was on a cane and used pain meds when back pain was significant. I went to the Mayo Clinic and got help. Have GCA too ( by biopsy) and had to do IV prednisone for 3 days at one point. It is a waiting game. Add massage - very important. As is prayer.
Use ice and heat daily. Daily naps. I took daily shots for soft bones for 14 months with good results- no cane now, no pain I can’t handle with aspirin, prednisone 1 mg a day, walks 3 times a day, etc. I hope this adds to your research
And I can add more information as needed.
Emma Carvin
Thanks Jaycee444, I could have written your piece, it so closely reflects my experience! Except I don’t know anyone with PMR going up mountains. I get exhausted just going to the shops and have to rest before I can unpack the groceries. I’m so grateful to the lovely people on this forum for making realise this is common. I also find if I have had a very full day, I pay for it the next day and feel washed out and achey. I do try to pace myself but it is sometimes almost impossible. I wonder if anyone takes an extra 1 mg when they have to go out on a long day?
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