On January 13th, 2012 I will have been living with Chronic illness resulting in chronic pain for exactly one year. Not one day in that entire year have I been pain free. It is a daunting statistic and if that isn't bad enough I know that there is a very high probability that the remainder of my life will be lived in pain. It is no wonder that Chronic Pain often coincides with chronic depression.
It was 8 months before we discovered the cause of my pain. I believed for all those months that if we just figured out the cause then we could treat it and it would go away. I look back at that time and think how naive I was and then I realize it was not nativity, it was how I got through some of the worst months of my life. Today I have a much better understanding of all of the things I have been diagnosed with and while I am not happy about it, I have accepted that this is the way life is. I cannot change it, I cannot wish it away so the best thing to do is to acknowledge the way it is and figure out a way to live my life so that I am not merely surviving but actually living. I decided when thinking about the new year that I was going to focus on the present in hopes that I could start living again even if it is with restrictions. None of these things do anything to help me deal with the crazy amount of pain that I live with. I cannot: think, wish, dream or bargain my way out of pain or the diagnosis'. The pain is very real and very bad.
Each day I live with a constant ache. Now please don't dismiss my ache try to think of it as more of a tooth ache and then you will have an idea. I have that ache in the joints of my feet, knees, hips, legs, back, shoulders, elbows, wrists, hands, neck and jaw. Then I have an ache in pretty much all of the muscles that surround those joints. So basically I ache from head to toe on both sides of my body because RA is special that way. That pain all on it's own, day in and day out is more than anyone should have to face. Then we can add the pain that comes in the form the feeling of somebody stabbing you with an ice pick in all of those joints...sounds more like a horror movie doesn't it.
Did you know that each foot and ankle contain 26 bones and 33 joints and more than 100 muscles. Now remember all those muscles ache and those joints often feel like they are on fire (in my feet especially), while being stabbed with an ice pick. I have often told my hubby I feel like my body is more like the old arcade pinball machines as the ice pick stabbing seems to jump from joint to joint, just as the pinball bounces around the machine from one area to another. When that is happening there is NOTHING that can be done to relieve the pain. Pain meds are a joke, they do not get rid of the pain they simply take the edge off , if you are lucky . If the pain is under an 8 and you take pain meds it takes the edge off enough so that you can actually function and think of something other than the pain. At the same time, I don't want to think what my pain would be like without my pain medication.
My Rheumatologist talks about pain scales. Pain scales mean nothing to me. Pain is subjective. I have had people complain to me about a certain pain and then apologize because they have no right to complain about such minor pain when I am in constant pain. and my standard response is no, you have every right to your pain. Your pain is what impacts your life and you have a right to your feelings and to express your pain and not have it compared to anyone else. We can all experience the same injuries but feel the pain differently. It also has to do with primary and secondary diagnosis. All of my diseases seem to have descended upon me at the same time. I think it is truly safe to say that my immune system is out of control attacking everything it shouldn't.
As for my Dr. she simply wants to know on a scale of 1-10 where my pain is. Not sure how that is helpful other than they want to hear that number going down when they meet with you. She has never asked me why I assign the number on that scale that I do. Behind the scenes is simply what am I able to do in relation to the pain. A ten on the pain scale is when I am unable to get out of bed, I cannot be distracted from the pain, I am in tears and begging for someone to make it go away, often questioning if I am going to make it or in the throws of it wishing I could die to make it stop. Yes, I have had pain that bad that I wished for my life to be over. Maybe it is the fact that we are dealing with the accumulated effects of the pain day in and day out. I have had more than my share of days where I have been in that much pain. In general I tend to stay around a 7-8 and you can often hear me say that life would be okay if we could get it down for a 5. A five I could consistently manage and then I wonder why anyone should have to live in pain at any number.
My family Dr. says that I should never let the pain get that bad. I take heavy duty pain meds 4x daily and even with those I live most days no less than a 7 and often 10+. This is to avoid the peaks and valley's with my pain. Trying to keep me on an even keal so that meds can do their job. I would hate to imagine where my pain is without my daily pain medications. I also use: heat, soaking in a hot tub (I have a walk in tub, thank goodness), ice packs, topical creams and rubs, music (believe it or not it is a known to decrease pain and depression!), meditation (I try but if the pain is over 8 it just doesn't work because I cannot focus on anything other than the pain) and anything I can think of. I used to use massage but that the last two times I went made things worse.
I recall seeing a pain scale that was helpful on RAWarrior.com but I was in so much pain when I saw it that I don't recall much about what it said other than I need to go back and find it. When I do I will share the link so that if you haven't already seen it, you can take a look and see if you find it helpful! It was actually a scale that RAWarrior linked to and here it is. I think I should consider printing this scale out and reviewing with my Dr. so that we are on the same pain scale page!
What do you do to manage your pain? Have you come across an effective pain scale? Please share your techniques for dealing with pain, preventing pain or if you have found an effective pain scale.
Looking forward to reading your comments!
© 2011 Rhonda