Do you suffer from fatigue?

Hi. Welcome. Thank you for doing some research into this very important area.
Just a bit of feedback re your survey.
My husband has completed the questionnaire. Fatigue is one of his bigger SCI issues and he is pleased that it is being researched. However he found it a little confusing in parts and difficult to answer accurately. He says that separating mental fatigue and physical fatigue is very hard - they come hand in hand for him so often he can't tell the difference.
Sometimes he gets pain which brings on fatigue and sometimes he gets fatigued which brings on pain. Medications have a powerful link with fatigue also.
Good luck with your research - look forward to hearing more.

There are many types of fatigue with SCI -- overuse, meds, systemic issues, disease processes (i.e., etiology,) thought issues, etc. Let me extrapolate on the last one. I have realized that just planning my "day" actually increases fatigue. I know what I'm up against and we plan as we must so that we make it from A to B AND not end up bed bound (overuse). That line is different everyday. So we do One of three things 1) push ourselves too hard, 2) play it safe from what we think can be expended without loss of time but some functionality, or 3) just imagining our "objective/s" will increase out fatigue. Kind of a catch 22. Need for plan versus increased just by "thinking" about our goal/s that day. Some people on many boards have removed the fatigue by using a chair. Old timers will tell you, it is not worth the valuable time. People who do this have had resistance from family/friends as it "appears" they are giving up. The ultimate question we come down to is how do we get the most bang for our buck.

I saw you on AP. But I think I could not answer questions as well because you ruled out other possible options. And, sorry, I finicky about measurement in terms of validity and reliability. What I would suggest is that you ask your population what you are NOT considering. Ironically, if you spent time reading, you might realize that your questions are constrained to a preconceived notion (i.e., bias). And most of us will not select an inaccurate answer just to complete your survey. There is no benefit for anyone. You have to think outside the box and right now you are in one. We are willing to help but I suggest you get feedback from "the real" population. And read...it's too bad AP is no longer online -- talk about a wealth of information. You have to understand, people like us find each other because the outside world does not comprehend what SCI is. And while we wish to be understood; we do not want anyone to become part of club by learning the hard way. Get to know your population better. Right now, you don't. IOW, design is the most important. You need to be aware of your errors to the best of your ability before herding cats. Then, you might actually produce something that has validity and reliability.

Best,

Out
Hi all,

I am conducting research into causes of fatigue in adults with spinal cord injury. The findings of our study will help clinicians learn about their patients' vulnerability to fatigue, and provide actionable interventions to help manage fatigue.



Please help us understand fatigue in the context of SCI by filling out this survey, which takes about 15 minutes to complete online.



Here is the link: . etiology.com/r/SCIFatigueSurvey



To be eligible, respondents must be 18+, have a diagnosis of SCI/D, and speak English (US and UK).



This study was approved by the UCLA Internal Review Board.



I look forward to hearing from you,

Best,