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I've found a good scale for rating symptoms.

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Crohn's Disease
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Posted 8/11/2009 7:27 AM (GMT 0)
It's actually for fibromyalgia and chronic fatigue patients, but I think it might translate pretty well to our Crohn's experience too.

http://www.cfidsselfhelp.org/cfs-fibromyalgia-rating-scale

The good thing about this scale is that we can actually *rate* our fatigue and give doctors an indication of whether & how much it's governing our lives.

Hope you find it helpful,

Ivy.
Posted 8/11/2009 11:28 AM (GMT 0)
To see it like that makes things quite easy. Though it shows me to be worse off than I would ever be able to desrcribe or admit to. I always tend to underrate my fatigue/pain, especially since I "look so good" compared to what I was when I was on death's door....

Tanya
Posted 8/11/2009 11:35 AM (GMT 0)
Yep, same. I think I'm sitting at about 25 or 30 atm, was down at about 5 a fortnight ago.
Posted 8/11/2009 2:01 PM (GMT 0)
I printed this to take to the docs with me. my only problem with the list is the combination of the work hours with the symptoms. I am stubborn enough to work more despite the symptoms. i think I fall anywhere in the 50-80 range depending on the day and time of day. even with that range, this gives me a great tool to describe life to someone who doesn't live with the disease
Posted 8/11/2009 11:27 PM (GMT 0)
I think the point of this scale is that with illnesses like CFS, you *can't* push through the fatigue. If you push too hard, the fatigue is likely to get so bad that you will spend days / weeks paying for it, and may be bed / chair ridden and struggling to move at all. (I've been there; it's not fun).

I'm glad you liked the scale. I'm planning to try to use it with my drs too.
Posted 8/12/2009 3:00 AM (GMT 0)
Thanks Ivy, I love this scale and will show this to Gastro on next visit.
Jo
Posted 8/12/2009 3:20 AM (GMT 0)
Thanks Ivy, going to take this with me to my next appt. Now, who can come up with one for this blasted nausea that never leaves me, just sometimes gets worse?! Could it be the Imuran?
Granna
Posted 8/12/2009 4:58 AM (GMT 0)
Me too. Thanks! I bookmarked it and will print it before my next doc appt. It's a great way to explain where I'm at. I don't like the pain scales because they leave things out. This really covers more aspects of life - or at least includes them in the rating.
Posted 8/12/2009 5:56 AM (GMT 0)
I like this! I think I'll follow everyone else's example and take a copy to the doctor.
I'm actually between 40-60 right now. It's odd..some times I have so little energy I can barely speak, and then a few hours later I'm on a cleaning frenzy or hyper at work.
Posted 8/14/2009 6:31 AM (GMT 0)
this is great - i never fully explain fatigue to my dr - yet if i think about it its the first symptom i get of a flare - so its prob really important i explain it - though looking at this - i think i may be worse than i let on a lot of the time (& my test results were worse than i realised too)
Posted 8/14/2009 10:49 AM (GMT 0)
Granna,

Yes, Imuran can cause nausea. Be sure to mention this to your doctor. When I was on Imuran a few years ago, one thing that helped with the nausea was to take it with dinner instead of earlier in the day. Somehow, taking it later in the day seemed to make it not so hard on my stomach.

Good luck,
Posted 8/14/2009 11:57 AM (GMT 0)
This was really good! Not like that 1-5 smiley face stuff... I'm somewhere between a 30-40 mostly...
Posted 8/14/2009 2:18 PM (GMT 0)
That's a great resource.  Thanks for sharing.   tongue
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