Random thoughts---I think one of the most frustrating things is ---- all those things we would have dismissed, a sore groin, a head ache, shoulder pain, etc, etc etc over the years--now has to be examined in light of the GCA/PMR--- having a hard time coming to grips with that. Always been one that pushed thru, and got it done--- now sit on the couch, and rest--or go garden,--not sleeping very well most nights, tapered to 50 mg this morning--so I go garden and I'm sore, would it matter, would it do any harm? Everyone says when you are fatigued, and I am, not to push thru makes it worse, so far I haven't seen any difference, I'm fatigued if I sit, I'm fatigued if I go about like I did before I was diagnosed......... for some reason this morning I am really frustrated and confused.......Thanks for letting me put feelings to paper---
A friend told me last night, well you just need to get well---Ohhhhhh really? and do you think I don't know that--and what would you like me to do differently?
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pwalker801
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Yes it is very frustrating, and even more frustrating!
We do assume that every little niggle is related to our illnesses, and very often they are a consequent of them if not directly related. Sometimes they’re not! Bit difficult to tell, very often. But your muscles are compromised, so it’s no wonder they complain a bit more than they did before you auto immune system went into meltdown!
Bad sleeping patterns are most likely due to high Pred doses, and should reduce, I think mine lasted about six weeks and then I got back to normal.
So if you’re not sleeping, body not regenerating - result fatigue!
GCA still with you - Pred does nothing for that just controls the inflammation levels to enable you to get on with life - result fatigue!
For some people a side effect of Pred is - yes you’ve guessed it - fatigue!
Notice a trend! Unfortunately yes - and friends don’t understand! They think fatigue is the same as being tired - sit down have a cup of tea and everything’s okay - no it AIN’T the same!
You have to find a way to live with it, what suits me won’t suit you, but you WILL find a way! Honest! 🧚♀️ Wish I had a magic wand, but I haven’t.
It all comes down to acceptance, doesn't it? Sounds like I need to work thru some things and try and figure it. I never took one prescription drug up til I was diagnosed Febr 2018 with PMR and then GCA first of April 2018, so there could be some pride involved..... It hurts when you fall off the pedestal and hit the ground----thanks for being so kind DorsetLady, really appreciate your posts.....
Fighting it now. We'll all fight together. We'll support each other knowing that we are fighting to help our bodies. It is the right thing to do. That's my mantra.
I wish I knew what I've got, I went to doc in Feb same as you (?) she suspects GCA, but the Rheumy guy says I'll have to go back in 6 months when off the Pred! I'm fed up so decided yesterday to see doc soon and say "get diagnosing!" They're just leaving me hanging grrrrrr.
I can so relate to that feeling of not being able to rest or to do things or escape from how you feel. I usually lie on my bed under a blanket and go to sleep. At least it is time out. You are already pushing through. It is only the Pred that is allowing you to function at all. You are still suffering from a serious illness. You need to be kind and gentle with yourself to aid your recovery. I know it’s frustrating and you will adapt and find a routine that works for you. For now, you need a new way of being. This is a perfect place to rant, we are all nodding in recognition.
Ah - I misread what you meant I suspect. Your "... not to push through makes it worse..." and my "... not to push through makes it worse..." aren't the same
Think it's all been said and just to add you are very early on in your illness and going through all the normal emotions. You are spot on with acceptance, its a change process and we all know how affect us. Hopefully you will get to some acceptance sooner rather than later or you will continue to suffer. It doesn't mean you have to give up all you love to do just put it on hold or simplify what and how you do those things, you will still have them as part of your life but at a much slower pace, it really is important. We know we've been there.
If your sleeping pattern doesn't improve don't accept that for too long, it is the steroids, have a word with your doctor/rheumy to give you something to help. I was near to euphoria and with not sleeping and prescribed Amitriptyline 10 mg at night, it worked.
I did a lot of journaling yesterday about acceptance and why I'm having a difficult time with this. I'll keep working thru it---and I forget I'm early into this, it seems like forever----I appreciate your words of encouragement so much, thank you!!!
Yes, it is a beautiful day out. I am just realizing as I'm reading through these posts that if I was not feeling so crummy ( I did over do having lots of fun over the weekend), I would not be able to enjoy the outdoors and feel validated that I can just lay out here and read and soak in the sun. I know with the prednisone I need lots of suntan lotion. I hope you all have a sunny day one way or another. Praying for all of us.
Have you heard, "...just get yourself outside, you'll feel better!" OR "...have you tried exercising?" Hahahahahahahaha! "Why yes, I frequently get up off the couch and walk all the way to the loo!"
I'm sorry you're feeling so fatigued... I'm in same boat. And "YES," it is so very frustrating when no matter what you do (or don't do!!!) you're exhausted. I was so disgusted with myself on Saturday because even though it was the nicest day of the year I never managed to get myself out of the house! I wanted to... I meant to... but I had neither the energy or the inclination to get out there. I was so disappointed in myself.
Yesterday I managed a garden centre and John Lewis and today we have"BIG" plans to go to the cinema! Hahahahahahah.
I understand how you feel when, well meaning, friends, try to give cheery advice. They have no idea, even if you have explained what PMR. stands for. After a few straight ' I will say this only once' emails, so can't get any ifs and buts back, the message has got through. Others I don't even talk about it any more. Try not to let them get you down, tell us, we understand.
And.. you must make sureyou taking the pills aargh!
Your journey sounds like mine. I was diagnosed December 17 with GCA on 60 mg Pred but now down to 12.5 (10mg on Thursday) . My sleep was poor, muscle weakness bad energy low which was frustrating however the people on here helped by telling me to be kind to myself. I have improved slowly and set a goal to do one thing each day The sense of achievement helps me to move on and I still enjoy many breaks for a seat and a cuppa and do not beat myself up about them. Today’s task is to paint three small areas of fence followed by a seat in the garden to survey my work! Take care.
Wow! from this December 17 at 60 mg, now down to 12.5mg----that seems like a fast taper........ I started at 65mg the last of Febr and now to 50mg.--and will be on 50 for a month, thats along with the Acterma shot.....---this journey is like a maze, never know what you are going to run into, each day brings with it something new, swollen knuckle, eye infection, sore muscles---then the mental aspect, acceptance is a big one for me.... kindness to myself, take is easy. It's Monday morning, and this is the day the Lord has made, I will rejoice and be glad in it.. very thankful for all of you. Have a glorious Monday!!!!!!!!
Greetings pwalker. Boy do i identify with the acceptance bit, doesn't come easy does it! I feel like I reached a new low today, have been resting for about 3 hours to summon the energy to have a shower, will now have another long rest before I sit in the kitchen to prep some veg. Dear oh dear, how the mighty tumble!
But I do start everyday by meditating on This is the day the Lord has made, I will rejoice and be glad in it, we may be done for now but certainly not defeated.
Hope you get to enjoy the rest of this glorious day.
soldier on is all there is to do - very complex illness with drug side effects so pay careful attention
Hi. pwalker801. Most here know how difficult it is not to push through. Your body,which you are use'to ignoring, will spank you back. This really is not a "feel the burn" illness. No pushing pain barriers help on this one! You have to find your own way through with the best professionals aided by the excellent support / experience /understanding on this forum. It is a toughie but lots get through it. A year in with GCA. myself my innate stubborness persists. Hope that helps.ATB
So difficult- I have GCAPMR but have never been at really high doses. But as has been said, we do understand. Knowing that others understand and that others will give support and guidance, for me anyway, has been a life line. Acceptance too for me comes and goes, depending on circumstances but it does get stronger, the longer I'm on this journey.
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