Trying to settle into a new routine, as much as you can with GCA/PMR. On 60 Prednisolone, symptoms finally settled this week, still off work (month) possibly longer if needed, very familiar with the spoon theory/pacing (ME - 24 years in remission for last 2 years) but feeling very frustrated to find myself back in a chronic illness and coping with the overwhelming fatigue.
Any suggestions for coping......I appreciate it may be a long shot, thankfully not affecting my mental health as I am trying to do my MA (bad timing) but do rules for ME, (banking energy, 70% rule) improve the fatigue in the long term or is this a different beast....
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Indigo27
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I had unbelievable fatigue when my adrenal glands had to start doing their job again. I had trouble turning pages in a book. I found that all I could do was just give into it. It would be nice to find out another way though.
There are a lot of different sorts of fatigue that we experience in autoimmune disease. The links in the post above have some articles that may be helpful, including the spoon theory and one referring to ME which you may know. But autoimmune fatigue is the same whatever the underlying cause - and each sort needs a bit different approach to master.
A lot of people are surprised by the Sjogrens article - even they have graduated from 13 to 15 types of fatigue over the years
Thank you I am just reading this and feel I can easily subscribe to 3-4 of them already, who knew. It make sense and also makes sense they might need different approaches. I feel that sometimes the methods I had found effective for the ME, whilst helpful and certainly not detrimental were not entirely effective. I shall look into it further. Thank you again.
I agree completely that there are different ways that fatigue can manifest, and indeed, different causes....the actual fatigue itself is still the same thing though.....'An overall feeling of extreme tiredness with excessively low...or no, energy'. The only things that will ease or remediate this are to reign in on current activities, adjust current lifestyle and rest, rest, rest. I see fatigue as one of the main ways the body is letting you know it needs help.... to re-adjust, reset and repair, and although the different reasons that the fatigue is being experienced may warrant a tweak in strategies applied to address it, 'rest' is the key to tackling it.
Bless you Kendrew, you are so right and in my heart I say your exact words to myself over and over again. ME taught me that but I still deny that. I feel very very silly sometimes with the same information going into my body like a computer but expecting a different outcome. I am still not wholeheartly listening although I know I have come so far. There is still work to do and until I do listen I know I will still get the messages sent. Talking to people who get it, them reminding me helps refocus and try to accept the variable limitations the fatigue imposes, taking it on a moment to moment basis. sometimes it is just frustration that you need to voice, I think this rambling post is more about that than seeking answers.
Haha!😄......you made me smile because I think many of us on this forum know exactly what we SHOULD be doing with regard to the issue of 'fatigue', but at some time or another have also thought we were up to pushing those boundaries just a little bit further!!.... We've all experienced stern reminders afterwards of why that wasn't such a good idea!!.....so please don't feel you're the only one who doesn't always follow the advice! Even those who "get it" can err!🙂🙂
I So agree with Kendrew....I too experienced and sometimes experience severe tiredness.....all I did is have a strong coffee ( like my teddybear...) and rest, yet again, often after only been up for two hours.... Fighting it is not going to help...still now after almost four years, of PMR on 3.5 mg prednisone, I do rest 40 min a day so I don t get that terrible exhaustion....listening to yr body is really all you can do, I wish I would have a fantastic suggestion for you, but I don t....for most of it it will improve with time..try to go day by day...don t think ahead to much if you can....on this forum, most of us know exactly what you talk about....
Thank you Kaaswinkel I agree no magical answers yet we seek them, expending valuable energy. Acceptance seems such a negative word sometimes. but is the way forward...I thought I was starting to accept the illness albeit begrudingly but more work to be done I think. To be grateful for how far I have come and not look too far ahead just as you say.
What a coincidence! Yesterday I was absolutely fine but then suddenly I felt like a tap had opened and all my energy had gone. I went to bed and slept solidly for 2 hours then felt so much better. This hasn't happened for months, totally out of the blue
Sorry everybody but so thankful you are here.....I really should know better having ME so long that there are no magic answers! Ever the optimist ! The fatigue is such a cruel element as it doesn't always correspond with energy level expended or the rest banked. This morning woke up feeling like I havent slept or been to bed.... more like I have ran a marathon, If only !
Are you able to sleep at night?? I am still taking half a 10 mg amitriptilyn which is 5 mg... my gp thinks I am a nutcase...5 mg can t help, AND it does. I hope you get a good or reasonable sleep.... send you love.
Morning Kaaswinkel I had months of extremely bad sleep as a symptom, waking in pain, soaking wet from sweats. Once the symptoms were controlled on the whole the sleep dramatically improved and I had a few complete undisturbed nights sleep. Absolute bliss. It has settled into the odd bad night mixed in with that. I realise i am lucky with that. Ill take the good bits when I can lol Much love to you too.😘
Only what others say - pace yourself and rest, afternoon naps and early nights worked for me and turning a blind eye to the housework and giving myself a pat on the back if I could do one thing a day.
Yes sort of where I am at...yesterday was just an incredibly frustrating day and today exhaustion is sort of ruling day but heads in better place thank you. X
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Fatigue and terrible tiredness. 
Fatigue.
Overwhelming exhaustion
Fatigue
