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Posted 12/15/2009 2:09 AM (GMT 0)
Hey gang,

So I've been trying to take a little bit more control of my whole situation. Joining you guys has been one step, but I've also been researching like crazy. A lot of the chronic pain associations suggest or have created pain journals or diaries for patients to use. I feel like this would probably be a good thing to do, as then I can bring it with me to my Mayo appointment in January and do a better job of explaining what has been going on. I'm curious if anyone is using something like this, if you have suggestions for finding one or if you think creating your own is better.

Thanks guys, I hope everyone is doing well!

Jenna
Posted 12/15/2009 2:15 AM (GMT 0)
That does sound like a good plan. It would kind of track down more of the pain problems we experience but I have not come across one.
Good luck and let us know what you find.
Mike
Posted 12/15/2009 3:02 AM (GMT 0)
Hi Jenna,

I used a pain diary for about 8 mo last fall/winter. It was really helpful for me at that time. Yes you know what makes your pain better or worse & yes you know how much you generally hurt on any given day, but I found that the pain journal really helped me to see the pattern/relationships. Chutzie has posted a link to a great pain journal in the CP 101 thread -- that's the one I used. I really only used the graph though, because most of the other questions etc don't apply to my pain. Pain journals can also be helpful to your doctors. It helps them see what is working & what is not.

Skeye
Posted 12/15/2009 4:46 AM (GMT 0)
Hi Jenna and Mike!

Like Skeye said, the pain diaries are wonderful and can help cut through a lot of time when trying to get your doctor to understand what your life is like living with pain every moment of every day. There is a link in the Fibro 101 sticky at the top of page one, but here's the link for you anyway.
www.painfoundation.org/learn/publications/files/TargetDailyLog.pdf

You're right Jenna about some of the foundations out there..they have created pain diary pages. This link is to one put out by the American Pain Foundation. Just copy one page for each day and have at it. It does have some extra items that some people don't use, including me, but fill out what you find important in your case. Then each time you have any kind of a doc visit take it along. A 3 ring binder or even a small report type folder work great for keeping them organized. I stapled a weeks' worth together and it helped them from being everywhere on my desk.

I feel that one of the best features of a pain diary is it shortens the time it takes for your doc to get you on a regime of pain control since he/she not only knows what your pain is like but it will show how you are reacting to any medications or other types of treatment clearly and quickly. It only took me maybe 5 minutes each day to do it...right before bed is a good time for many.

I do hope this helps and one of these days I'll get around to building a forum just for those of us here....that is if I can remember...lol

Chutzie <---Fibro Fog Brain
Posted 12/15/2009 5:13 AM (GMT 0)
Thanks everyone! I promise I did read the CP 101 thread, but it was quite awhile, lol. I did find the Pain Foundation's log. I also found a really interesting "Quality of Life Scale" as a sort of alternative to the classic scrunched up faces one :) Its from the American Chronic Pain Association, I thought it was a pretty interesting and maybe an easier way of communicating what's going on in some instances. http://www.theacpa.org/documents/Quality_of_Life_Scale.pdf

Chutz, what kind of forum were you thinking of building? Would it be anything I could help you with?

Hope everyone is doing well!
Jenna
Posted 12/15/2009 5:58 AM (GMT 0)
You know, now that I think about this, I realize that I should probably start keeping a journal again -- at least for the next month or so. It'd be really helpful since I will most likely be undergoing a neurostimulator trial within several weeks to a month or so. I always found my journal to be especially helpful in evaluating the overall outcome of a procedure & this is not one to take lightly. Thanks for the reminder Jenna!

Skeye
Posted 12/16/2009 6:34 AM (GMT 0)
Jenna you are right the quality of life scale is much better I think versus the little smile to unhappy smile, lol. My pain mgt dr made her own version using quality of life as the measure of what her patients can or cannot do on a daily basis.She even includes whether a patient is capable of driving themself to her appts or if they need someone to drive them. Her sheet is much more detailed and it does give her a better view on what is going on with the patient. It floored me the first time the nurse handed it to me and said read this and tell me your pain level. I was like wow, I have never seen anything like this, but it is wonderful. She laughed and said yep, this is the drs version of what a pain scale should say pain scale.
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