Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I don't remember how it feels to feel good...

So I'm trying to keep track of my pain, as suggested on another thread, in the event I need to apply for disability one day. The problem is, I can't quite figure out how to qualify my level of pain. I mean, I came up with a 5 step scale, with 0 being pain free and 5 being similar to the pain following a bone fracture (not the sharp pain of the initial break, but the after-pain if you will), but what I'm finding is that I can't remember what it feels like to be normal -- I can't remember what it feels like to be at 0.

For instance, I had a pretty good day on Sunday, mostly because I sat still for most of the day, but my ribs still ached, and my SI/hip/lower back still felt frozen (couldn't run with the dogs, not more than a up-tempo waddle anyway). But this was a good day. So I go to the computer and type how I felt on Sunday, and it almost looks (to any potential reader) that I'm doing okay.

I guess my question is, for all of you who are keeping track of your pain levels. How do you do it? Make a list of what you can and can't do? Come up with a scale, like I did? Any suggestions would be greatly appreciated.

In the end, I'm so worried that I'll find myself in a position where I hurt too much to work full time but not enough to qualify for aid. Being an only parent with two growing kids (soon to be driving, plus insurance, plus college, plus who knows what), I'm just worried about my financial future. I own my home, lock, stock and barrel, I live on a pretty strict budget and have managed to save a bit of money, but I find it hard to work even a four hour shift at Brookstone, let alone 40+ hours a week somewhere. I have no insurance, can't get insurance because of my condition, can't qualify for subsidised insurance because of the money I've saved -- such a vicious cycle. Anyway, I'm rambling now.

How do I keep track of my pain?

What if you use your scale, but add a few comments too? Sort of like "tried to walk with dogs, could only move slowly, not much movement today, very stiff" etc.

That's a great idea to have - just in case.

I tried to keep track of pain levels for my doc years ago, and the 0-10 scale didn't help me communicate with him in the least.

What seemed to get the message across to him finally was when I stated pain levels to him in terms of what I NOT do. It sounds negative, but it worked.
Ie. Only able to walk 5 mins at a time while on 10mg prednisone, unable to stand at all, pain so great it was impossible to dress or go to school, unable to sit in lecture for more than 20mins while on morphine, etc.

(And I just have to throw in my two cents here - some flares are worse than broken bones!)

I make little notes on my daytimer as to how I feel that day and what I can or cannot do. It really helps to look back and see. It helps me much more than the scale and the calendar is always in my purse so I can make my notes regardless of what is going on.

Just a thought.
Hope you feel better soon.
Possi

pete aloha

first...it's 40 + years for me...in reprospect i don't think 'feeling right' was ever there, almost didn't get
out of kindergarden cause i couldn't do a headstand or a sommmersault, carried a cane in 3rd grade.

but, if i may...

creating a credible pain diary is a very depressing project...i think we all have a suppression technique on board...
something to erase the memory of pain. if your 'pain diary' is purported to support a potential disability claim
at some time in the future, then don't worry about it...THEY will want stuff that is contemporaneous ith your
filing, not something years old....social security cares not a wit about 'how you got there' , 'what you've
gone thru', or history; they are concerned withthe omnipresent NOW...why can't you work now?

now, if i may, possi's daytimer note is excellent; LIMIT the time frame- make it a 24hour picture of a two week
period...not a lifetime. doesn''t matter if 1-5 or 1-10 is a number scale...just doesn't matter...there are no
failing grades, no wrong answer...

and I PERSONALLY BELIEVE tis 1-10 game doctors play should be curtailed by screaming at the top of your
lungs at the appropriate time FOURTEEN, and see if they do anything different.

i kept a calander, wrote waking times, what woke me, and notes with times and what/where...and you only have
credibility to say 10 if you prove you know what three is...and stuff changes as the day goes on...so if
right thigh is cramped up and stiff at 2pm and gets worse by 7pm...say so.

also. you don't need an inventory...don't do their job for 'em and tell 'em what is ok, all you list is complaints.

i also found 'intense, profound, incapacitating, horrible, stabbing, dull ache, perpetually sore, stiff' etc
better than the number game...think outside the box...create your own terminology, you're a civilian.

best
aB

I always thought the pain scale a total waste of time. What is a 6 for one person could be a 4 for another. It all depends on what you are personally referencing it to. I compared a 10 to childbirth, but someone who hasn't had a child could consider some other painful event in their life as a 10 that could be more/less painful than my experience. It think the idea of an event diary more helpful--what you could accomplish or couldn't on a particular day.

When ever I go to the doctor he has me fill out a questionare where you rate things like "How hard is to get out of bed.", "How hard is it to put on yur shoes." . There are about 20 question like that, and you rate them from 1 to 10. As for feeling normal. I remeber years ago when I first got out of college, I had about two weeks were I felt great. I kept thinking I feel so good. Then one day it hit me that this is how most people feel all of the time. I only got two weeks and then the pain and fatigue came back. I had the same feeling after about a month on enbrel. This time it lasted several months. The the MS started to set in.

Good Luck

Excellent suggestions, guys, thanks so much. I guess there really is no one good answer, but I think I shall keep track in terms of what I can or cannot due and the pain associated with doing what I can do. You see, I CAN push through the pain and do things, but I pay the consequences, sometimes for months on end; I'm still hurting from a leisurly one-hour's worth of yard work on Tuesday. I guess I'm grasping at straws, but I'll keep grasping; what else can I do? Thanks again to everyone.

I think we think alike. I use a lot of those words. I told the dr. this 1 - 10 stuff was a waste. I don't remember feeling good either. I was sick a long time before I got my JRA diagnosis at 14. I could never climb trees, had to quit the bikes earliest, etc. long before that.

It's the pits.
Possi

I agree with the others, the 1 - 10 pain scale is crap, with a capital CR. I think Marni Jackson, in her book "Pain the Fifth Vital Sign" hit the nail on the head when she pointed out that it's impossible to quantify 'scientifically' something as subjective as pain.

Honestly, it's insane. Like you, I tend to push through the pain (sometimes I pay for it, sometimes I don't). So, for me to say an 8 on the pain scale, mainly means that I lived my day as normal, but reeeaaaallllyyyy slooooooowly and with no joy. Someone else's 8 might mean they couldn't get out of bed that day. But I've had no choice for much of my life - I own my house, I'm the only one paying the bills for the most part (for most of my adult life anyway) and if I don't get out of bed and go to work I'm sunk. So I make myself do it no matter how horrible I'm feeling. Does that mean my pain is any less? Hell no - it just means that I make myself function because I have to, no-one else is going to do it.

In fact, I'm so good at it that my rheumy totally didn't get how much pain I was in ... until the day I burst into tears in his office out of shear frustration at the fact that I knew he wasn't getting it yet again. That day he got it. So list all the negatives because those're the only things that will get the point across. And keep your pain journal so that should the day come when you need to apply for disability, you're in the habit of doing it and have come up with a coherent system for noting it.

Hugs,