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Crohn's Disease
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Posted 6/26/2014 7:58 AM (GMT -8)

Sometimes I feel like the standard scale of 1-10 pain estimation isn’t the best for people with chronic pain. I find myself exaggerating sometimes when I am asked to rate my pain.

For example, I am allergic to adhesives and have yet to find a wafer (the part that sticks to your skin) for my ostomy that does not cause irritation AND also sticks well and provides adequate odor blockage. There are wafers for people w allergies, but all the ones I’ve tried were like buying store brand macaroni and cheese. You really have to buy Kraft in that case. So, I live w/o smelling like poo at the expense of my peristomal skin.

Normally, it’s not that bad- it can be irritated and angry looking but doesn’t really hurt. However, about a week before my Simponi injection is due, all bets are off. It gets red, uber irritated, weepy so nothing sticks, and my Pyoderma Gangrenosum (PG) flares. PG is ridiculously painful. It hurts to move, and breathe; it hurts to think when the PG is flaring. But I’m moderately used to it. When something hurts all the time, you get used to it. I know you guys know! So, what might be a 10 for someone who’s never experienced PG’s is more like a 4-5 for me. But if I’m asked by a medical professional and I say 4-5, it seems like it isn’t as bad as it is. So I say 9 because I want them to take me seriously. But then I don’t want it to seem like I’m a drama queen. How many people tell them 10 out of 10 just to get some attention? I can’t decide if I’m doing myself a disservice by exaggerating a bit to compensate for having to deal with chronic pain, or the 1-10 scale is doing chronic pain sufferers a disservice overall. That said, I have no clue what might be a better way to gauge someone’s pain.

Am I nuts? Anyone else do this? Thoughts?

Posted 6/26/2014 8:03 AM (GMT -8)
My rheumatologist was great at this kind of assessment. I'm notoriously bad at underscoring my pain, so he would ask more questions - does this pain wake you up at night? What activities have you given up because of this pain? After answering a bunch of questions like this he looked me square in the eye and said something like "your quality of life sucks and we are going to fix it." It was that conversation that opened my eyes to the possibility that there was a better remission out there somewhere and my GI was not helping me find it. The rheumy called my GI with me sitting in his office and had a frank conversation about how to proceed.

I think when you talk to medical professionals about your chronic issues you need to make clear what practical aspects of your life are disrupted by this. You've done a great job in this post. Don't let the nurses or whatever intake people you're talking to dismiss the problems you're having.
Posted 6/26/2014 9:38 AM (GMT -8)
You are definitely not nuts!  I have been trying to figure out how to rig the 1-10 scale for years.  Wish all docs were like my current GP or kazberns rheumy!

My last GP...I explained I had a pain in my back and sharp pains in my left leg.  Pain scale ummmmm 5ish.  I am still mobile.  I don't use 10 until I can not do anything and the pain never goes away and knocks me to the floor.  Her response was well if its only a 5 then we don't need to do anything.  2 years later I am in tears saying it is more of an 9 and she sent me to a PT.  PT could not believe I was not looked at sooner and I should have called my pain 10+.  If I had gone to PT sooner, I might have avoided back surgery.

Now I always bump it up at least 1 from what I would say...except with my super GP.  He checks everything and asks a lot of questions.

Riggin the system...another way of dealing with CD!  Frankly, I think we should refuse to give a number and describe how often and how much it hurts in terms of how many bowling balls are dropping on the area!

Posted 6/26/2014 9:44 AM (GMT -8)
I am sorry you went through that Habs! I don't agree with your PT's comment - I don't think it helps anyone if we embellish a "pain score" just to get attention. Then no one is believable. But I also think your GI was an idiot for telling you that a "5" is nothing. You should have kicked him in the shins and asked him how a "5" felt! LOL!

Here's another piece of ass-vice (like I've been trying to give Scifigal for a couple of weeks now). Musculoskeletal pain is outside the domain of every.single.GI. Don't bother with them past the first comment of "hey, my IBD is making my joints hurt." After that conversation take yourself to a good rheumy. And for back pain I absolutely insist that everyone get to a physiatrist. Orthos only know how to treat back pain with surgery. Most of the time physical therapy is sufficient!
Posted 6/26/2014 12:11 PM (GMT -8)
I know you have - I'm trying! I'm going to try to find one tomorrow. I'll put a message into my PCP (who is excellent) if she knows of one.

But I will say it higher than I think it is. My problems is that I've had such extreme pain, that compared to that I want to say numbers lower. But then it still hurts. Here is a scale that I've found that has been extremely helpful when I'm trying to decide what numbers to use. I found it in a hospital and took a picture of it:
0 - No pain
1 - Hardly notice pain
2 - Notice pain, does not interfere with activities
3 - Sometimes distracts me
4 - Distracts me, can do usual activities
5 - Interrupts some activities
6 - Hard to ignore, avoid usual activities
7 - Focus of attention, prevents doing daily activities
8 - Awful, hard to do anything
9 - Can't bear the pain, unable to do anything
10 - As bad as it could be, nothing else matters.
Posted 6/26/2014 12:29 PM (GMT -8)
Sorry was in a a hurry when I worte that...PT did not suggest I change the pain number...she just realized I was under counting the number and for most people what was wrong with me would have been a 10+.  I change the number some now just because I understate it.

Really I think the best thing is to use descriptions over the number...but I might carry sci fi girls list with an add on of the frequency of the number level (daily, weekly, constantly)

Posted 6/26/2014 12:43 PM (GMT -8)
I have struggled with this issue too. When I was in the ER in severe pain with my bowel obstruction I rated it an 8 because I could still talk and I wasn't passing out from the pain. But according to sci fi's scale I was definitely a 9 or 10. I think numbers are stupid and Kazbern's rheumy makes the most sense. I try to answer but also describe what I mean when asked.
Posted 6/26/2014 5:28 PM (GMT -8)
I used to think I had a low pain tolerance, but I had a GP look at me when I said that and tell me I had a high tolerance given all the things I deal with on a regular basis. She was good at asking me questions about how something affected my life. I think that is so much more telling. Although at least with a chart and descriptions it isn't as subjective. According to that I've been fluctuating between a 6-8 for the last month. No wonder I'm sick of being in pain all the time!!
Posted 6/27/2014 8:00 AM (GMT -8)
That list is really great! I've been at a 6-8 according to that scale for a couple months now. I'm getting pretty tired of it. I am going to ask about vedolizumab when I see my GI on the 7th. I was getting to the point that I was considering Tysabri... I really hate this disease.
Posted 6/27/2014 11:58 AM (GMT -8)
my biggest problem is that when i go in to talk with the doctor, i'm usually not actually in pain at that moment. i often just generally don't feel well, but most of the pain i experience comes when i'm in the bathroom, or having severe bloating issues. i don't typically poop during consultations, and the bloating is rare enough that by the time i get in for a visit it's passed.


so in hind-sight, everything seems much rosier than it actually was. plus, as you guys all mentioned, you just kinda get used to it. it still hurts, but it's an old familiar pain.

My GI staff caught on to this and do the supplemental questions.
Posted 6/27/2014 5:35 PM (GMT -8)
The problem I have is that the more pain I am in, the quieter I get. That doesn't help with pain management. I haven't come up with a solution.
Posted 6/27/2014 5:58 PM (GMT -8)
Like Bane said, I was rarely in pain during the appointments themselves. For a start my GI has a morning clinic, and mornings were always when I felt at my best, Crohn's-wise. Everything was out of my system by then, plus I don't eat breakfast.

None of my GIs have used the pain scale anyway. I only came across that in hospital, when you were asked to rate your pain every day. I have a funny feeling that even if I'd said 10, the nurse still would only have offered me paracetamol. But as it so happened, by the time I got onto the ward, the IV steroids and morphine had done their job, so my pain was about a 0 or 1. Before admission, it was more like 9.
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