Thoughts on Pain Scales and RA

This post is part of the RA Warrior’s Blog Carnival on Pain Scales

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I embarked on eating a vegan diet to help my Rheumatoid Arthritis (RA).  It has not fixed it.  That would be too simple.  If it was a miracle I would be found screaming from the highest point “Give up All Animal Products!  You will be Cured!!”

Instead I talk in my calm teacher voice (that has been cultivated over many years) and say

“It helps me feel somewhat better.  I am less swollen.  The other health conditions I’ve dealt with for years like IBS, reflux and headaches are diminished and I am left to deal primarily with the RA.  My blood pressure is reduced, my cholesterol numbers are down, and my blood sugar levels are regulated.  Could it be a placebo effect: That I want to see results so I do?  Certainly.  But it’s also given me some control in the midst of a disease that took all the control away.”

I was originally concerned about telling my doctor that I was adopting this lifestyle, thinking she would try to talk me out of it.  She was, instead, very supportive.  Particularly since I was continuing with “standard treatment” of medications.  My secret hope, of course, is that I would be able to go off meds.  Unfortunately that has not yet happened.  My doc did say I’m the only patient she’s ever met who has lost weight on daily prednisone.  Imagine what would happen if I could get off the steroids??

All this to say I still have pain.  I still have to deal with the pain scales when I go to see my rheumatologist.  And so I can definitely relate to Kelly’s post on RA Warrior about Pain Scales.  So when she put out a request for blog carnival posts about pain scales I decided it was time to talk about pain and RA again.

Unlike the facebook comment on Kelly’s post where the patient says they usually feel pretty good at the doctor’s because they have just been sitting and waiting, my reality is usually the opposite.  I have had to take off an entire day of work and write plans for the substitute filling in for me.  I have just driven at least 2 hours to get to the doctor’s.  I have gone “over the bridge” as we who live on the Eastern Shore of MD call it.  And while I’m not afraid of driving the Bay Bridge, it’s a mighty large bridge and there can be some stress.  I’ve left my calm small town (sort of!) for the big city of Baltimore and the traffic is usually enough to bring up my blood pressure.  And I usually have had to go to the bathroom for the last 30 minutes of the trip which means I ran in (OK, walked at a good clip) to use the bathroom before taking the elevator to the 6th (?) floor.  Then since I am usually at my appointment within 15 minutes of the scheduled time I sit and worry while the person in front of me checks in because there is no way I can take another day off and do this again anytime soon.  So by the time I get to the sweet nurse and ask how her son’s first grade year is progressing I am stressed out and worried and yes, in pain.

So I can typically answer truthfully that my pain is somewhere in the 5-7 range.  But, like the facebook patient, it’s not really an accurate portrayal of my pain.  Some of that is because I’m not completely aware of my pain anymore.  As I say to Mark daily “It’s just part of being me.”  Often something will be said about how I’m shuffling my feet and so I stop and feel and respond “Oh yeah.  My knees hurt.”  It’s not that the pain ever really stops but that I don’t always think about it.

I think of my pain, on a daily basis, as being less about a number on a pain scale and more about how it affects my life.

In my role as mom:

1 – I’m completely ignoring the pain.   Life seems fine.

2- I can cook.  I can clean.  Play some frisbee with the dog and maybe even some Just Dance 3.

3- I’m pretty normal.  Nothing 2 alleve can’t handle.

4- I can still do everything but I need a few more breaks.

5- The computer and the kindle are a whole lot more appealing than doing stuff around the house, but I can do it if it needs to be done.

6-  I’m probably on the couch and can have a good conversation with the kids.  I can put the dog on her lead if I need to.  I can make dinner.

7- I’m tired and slow but I can throw together a sandwich for you for dinner if you need me to.  Otherwise I’m on the couch.

8-  You’re going to have to fix your own dinner.  The laundry will continue to pile up.  I can talk to you guys, but no board games or anything.

9- Lying in bed but you can come talk to me.

10- I’m in bed.  I can’t handle the kids or the dog on the bed with me.  The door is closed.  The lights are off.  Mark is taking care of everything.

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While, in some ways, my pain scale is not specifically about pain, it actually is.  Because the pain I deal with impacts my life.  I tend to be able to keep it together during my work day but when I get home is when things are more likely to deteriorate.  Mark and the kids often get the short end of the stick because nights in the winter are typically a 7 or an 8.  We eat a lot of sandwiches around here in the winter time.

How would you define your pain scale in terms of your life?  I’d love to know how others see it as impacting them.

7 responses to this post.

  1. [...] at The RA Vegan wrote Thoughts on Pain Scales and RA. Megan’s pain scale adds words to the numbers one through ten, to add significance to each level. [...]

    Reply

  2. <3 I am always impressed with your posts and I agree 100% with the way your scale breaks down. I'm the same – I will push through the work day then feel utterly horrid when I get home. Beautiful post.

    Reply

    • Thanks so much. It’s a tough thing to figure out how to balance work and home. I worry sometimes that my students see a better part of me than my own kids.

      Reply

  3. Posted by turtlemom3 on January 9, 2012 at 6:55 PM

    Ooooo! Good one! I’m gonna adapt it for me and share it with my rheum doc! Kiss your fingers gently and rub them on your cheek, then put your left hand on your right shoulder, and your right hand on your left shoulder, and squeeze gently. That’s a hug and kiss from me for this great tool you developed!

    Reply

    • Thanks so much!! I’m so glad it’s helpful for you! And thanks for the hug & the kiss! I see my rheum doc tomorrow and need all the positive I can get :)

      Reply

  4. Your pain scale really captures the amount of energy that chronic pain eats up. I sometimes wonder if that’s the real barrier to communicating our experience of pain. Someone who has only experienced acute pain will talk about “working through” it, not understanding that there isn’t ever a time we’re not already doing that, as your level 1 captures. It’s not that there isn’t pain, its that we’ve become able to ignore or manage it at a certain frequency.

    Reply

    • Thank you Megan. I think that’s one thing that many people don’t get. The fact that, for many of us, living without pain is not something we understand anymore.

      Reply

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