Sunday, July 25, 2010 LeighAnn asks

Q: How much is too much?

How much pain is too much? This is the question I am always asking myself and oddly enough NEVER have asked my doctor. I am typically not a complainer, I usually keep it to myself. I do have a higher tollerance for pain and so for me to actually comment about being in pain its conserable.

When I was first DX with RA my pirmary complaint was that I had very little use of my hands. They were claw like every morning, I couldn't grasp ahold of the sheets or covers at night to pull them up, I was unable to open doors, cook, hold a pen, type, and driving was dangerous. If I compare now to then - I am doing great! :) I have 90% use of my hands and fingers and very little pain or discomfort. Its the rest of my body that i am now dealing with. Again when I first was DX I was taking pain medication at night to help me sleep and frequently through out the day just to function. I also felt like I was old beyond my years, and felt like I was walking through mud dragging a huge weight behind me. I have been at the bottom of the RA barrel so to speak so I know what it feels like. Again if I compare now to then, I am doing great - but I have also learned to limit myself.

I am currently on enbrel 1x a week, methotrexate 20mg 1x a week. I have recently started to take pain medication again to help me sleep and I have started taking ibprofen during the day to take the edge off of the pain. My last visit my dr told me I was in remission. (um, yea!?) My hips hurt, my elbows hurt, my back hurts, my shoulders hurt, my ankles and feet hurt. My hands are probably one of the few parts of my body that I dont think too much about. I mean they bother me time to time but the rest of my body hurts more. I am not sleeping well despite pain medication. I feel like I am doing pretty good considering, but at the same time I feel like I am going backwards. So I ask how much is too much? How much pain is normal part of the "i have RA" package and when is it something more than that? I know there is no cure. I am trying to figure out where I should set the expectations bar for pain control. I dont want to suffer quitely if I have the bar set to high, but at the same time I don't want to set it too low and complain all the time about hurting when its just part of life living with RA. Maybe I am wrong to think that I can live with RA and expect little to no pain. I dont know. So fellwo friends living with RA, share with me your thoughts on living with pain and RA. Where should the bar be set? How much is too much?

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Answers (5)

Lene Andersen, Health Guide

7/27/10 10:51am

Y'know, the first thing that came into my mind when I read this was that if you have to ask how much pain is too much, you're in too much pain.

You may be in remission, but if you've been at the bottom of the barrel - great expression, by the way! - then you likely have a significant amount of damage in your joints. Your RA is well-managed, which means the pain that comes with active inflammation is no longer there, but if your joints are damage, that comes with a different sort of pain and in my opinion, it's probably unreasonable to expect to manage that with over-the-counter ibuprofen.

In terms of expectations for pain control, depending on the amount of damage, you may not be able to completely block the pain, but being able to move through your day, do the tasks/work that you need to do with the pain muttering quietly in the background is pretty reasonable. Like all of us, you'll need to manage your energy, work within your limits, etc. - if you don't, you can probably still expect to pay for the next day, but again, it should be possible for you to get through it day with your life at the forefront, not the pain. Check out my post on Better Living through Chemistry for more on this topic.

if your rheumatologist is one of those doctors who doesn't treat pain (or ridiculously, doesn't "believe in painkillers"), talk to your family doctor about what they can do to help you get adequate pain management. I'd also recommend that you ask your doctor for a referral to a pain specialist who'll be able to help you get proper pain control through a multidisciplinary approach.

LeighAnn

7/27/10 11:58am

Thanks Lene for your response. I hadn't thought much about the pain from joint damage - I was just focused on pain from inflamation. And you're probably right, if I have to ask then its too much. :) Sometimes it takes somebody else to point out the obvious. Thanks. I'll also check out your post your suggested.

LeighAnn

Lene Andersen, Health Guide

7/27/10 3:08pm

It's easy to forget - you get used to the "new normal" and lose perspective, because most of your brain's busy dealing with the pain. A friend once had to remind me that it wasn't normal to be in as much pain as I was. I'm paying it forward.

ronie

7/25/10 4:10pm

Such is the days of our lives.

How much is too much is a question that has to be asked of ourself all day everyday. Why, because just about anything can be aggrevating to RA. I have a very easy going, laid back attitude but my RA can go from 0 to bi#ch in about 3 seconds. It comes and goes throughout the day or can go hide for a week or month or two.

None of us want to be complainers and because of this my friends call me Turtle. I move very slowly and can suck in all my appendages to hide in a heartbeat.

Listen to your body. Stretch and exercise as much or as little as it will let you. Movement is good to keep up blood flow and oxygen flowing. Oxygen is a natural pain reliever, hence breathing exercise during labor and child birth. But if erosion is present in a joint, movement can be painful and destructive.

If your doctor says remission and you don't believe him, listen to your body just like you listened to your body to be dx in the first place. We know when something is not right and our bodies will tell us. You will know when you are experiencing anything even similar to a remission. Girl it is wonderful!! But like everything that has to do with RA, it will come and go as much and as often as it wants to.

This is much more than one day at a time, it is one minute to the next.

Easy does it.

Loralie

8/18/10 9:30pm

When I was diagnosed with RA in 2007 I had been living with severe pain 10:10 in my hands/feet, was told that i cry in my sleep, I would hobble to the couch in the morning and it would take me hours to have the strength and courage to get up and move. Originally I was placed on methotrexate and had no relief but several extra side effects to deal with. Then i was placed on Enbrel injections q weekly about 2 yrs ago and, other than periodic swelling if i get overtired or eat very salty foods, I really dont have severe pain anymore, if it looks like it is rearing its ugly head now and then i will take a dose or two of prednisone and kick it back and I am satisfied with my current status. So first I will ask you this question that I asked myself: do the side effects of your current medications give you enough relief to outweigh the risk that they present? If you are experiencing more pain than the risk of your current medication is worth.. then the answer is; You are having too much pain. Try something else.

Sunne

10/ 8/11 8:50pm

God Bless you honey...I'm at that point. I live with dystonia. It is a form of spasticity. when your muscles all over pull tight and snap away from your bones.

I don't know what to do either? my elbows hurt, my feet, my back, my legs, and my jaw. my pain meds are high and don't really work. my doctor just says "you'll be allright". And the truth is I 'm not and I wont be. What will I be like in 5 more years? I'll think of you when my pain is bad and i'll say a small prayer.

BerserkeRA

10/ 9/11 6:51pm

This makes me think of that "on a scale of 1-10, how much pain are you in today?" question we always get from the nurses...

I'm going to start telling them: 11.

I did some research into that question, and it seems there are no guidelines for what the numbers mean, because pain is relative.

I personally think that if I need pain meds to sleep it is way too much pain, and if I have to take them at all, it is too much pain.

Like you, I have a high pain tolerance, and I generally don't say much about the pain I'm in (much to my wife's frustration).

When I have to take pain meds on schedule for more than a couple of days in a row, I call my rheumy for help.

Q: How much is too much?

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