I just found this link on the Vasculitis forum...it is from the Crohn's & Colitis site and was developed for providing a more objective measurement of fatigue in IBD.
Because chronic fatigue is one of the main symptoms we manage, I thought this might be useful
I found doing it very very interesting....a welcome reality check: having managed chronic fatigue all my life (am 60+), and learned to reasonably compensate for it, I sometimes don't give myself the credit I more or less may actually deserve....I can't imagine I'm the only one who does this. My score indicated severe fatigue...and here I am totally resigned to this for years & years...my conclusion: even our most severe symptoms can become routine
maybe you saw in the latest News & Views lupus UK mag there is a v interesting full page article titled: Lupus - an undiagnosed disease. if you didn't: i'll just explain that in this piece, a Dr Davenport highlights the difficulties of diagnosis in primary care e.g. via GPs. he lists what he calls the 4 main factors why lupus diagnosis can take up to 7 years in primary care alone, a rate, he tells us, which hasn't improved over the past 20 years, "with 45% of patients initially given a diagnosis other than SLE". the second of Davenport's 4 main factors is: "presenting symptoms can be vague - and non-specific, such as fatigue, lethargy and aches and pains (for most lupus patients the extreme fatigue is the most difficult symptoms to live with)"
certainly, in my case, this factor was easy for my gps to misdiagnose - putting my fatigue down to the strain of life with long term chronic pain due to spondylosis.
ironically, when my sle was finally recognised by a brilliant rheumatologist in 2011, we discovered i'd actually been diagnosed with lupus as an infant & teen....looking back i do remember all too well how fatigue, lethargy + lack of stamina & resilience affected me from childhood, through my teens and university years...on and on right through my working career and forced early retirement...while my hero husband's drs had no prob explaining that his crohns (another autoimmune condition) was bound to involve significant chronic fatigue. now he is in remission, and my systemic lupus meds are somewhat damping down my fatigue
i'm enrolled in the BILAG study, which includes loads of ?s about various aspects of my fatigue in each periodic review questionnaire....i'd think it could be relatively easy to use that stuff in designing a lupus version of this fatigue questionnaire....no? but, oh to have the energy to get into organising this....
Very interesting, I think we do just get used to feeling like that and it becomes normal to us. Someone asked me how I felt today and I said fine I actually feel exhausted but that's just a normal thing for me so it didn't even cross my mind to say I feel tired!
Thank you so much for posting the IBD fatigue survey. Like you I got severe and I feel we need to give ourselves extra pats on the back for coping!. You will have done what I have , just adjusted everyday life to try to minimise it's effects , it then becomes our normal and I just assume everyone does it!. Ha!. It would be good if Lupus UK came up with a similar survey. Take CareX
Thank you for sharing this, very interesting. Makes sense now why it takes me for ever to do tasks I used to do in no time at all, why I'm always getting stressed out by anything involving taking decisions and activities requiring effort (both mental and physical) and why I'm always so b****y grumpy!
This is it: all of us live with this...it'd be vvv strange if we weren't grumpy sometimes (likewise if our being this way didn't give the occasional grumps to those living & working with us)...there is an awful lot to "put up with" isn't there...
Thank you for the link. I found it easy to use and I'm sure something similar to it aimed at the Lupus community would be appreciated by many people. Your point about the amount of compensating we do really struck home.
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