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Posted 2/20/2013 12:38 AM (GMT 0)

It’s probably the most common question we’re asked as chronic pain patients, “On a scale of 1 to 10, how bad is the pain?”

Most of us have moved past the urge to scream “FIFTEEN!!!” and then hit someone… But I’ve always felt it’s a stupid system because it fails to take into account both the physical and emotional effect, and the vastly different ways we all relate to pain.

 

While I don’t have many details for lower end of the scale, I judge the higher end based on if my medication works, and what physical effects I’m seeing from the pain. (For example is it making me queasy or does it make me throw up? Is it making me dizzy? Etc. When I start getting head spins and throwing up, that’d be a 9.)

I used to use one that relied on how well medication was working, how long it takes to kick in, how fast it wore off… But I kept finding myself at a 10, which got depressing.  Plus I’m superstitious. I refuse to ever label myself with a 10 because I feel it’s tempting the universe to make things worse rolleyes

 

So I’m wondering how you break your 1 to 10 down. What do you take into account, and do you find that you’re flexible with your definitions?

Posted 2/20/2013 1:58 AM (GMT 0)
Pain is subjective and there are differant types of pain. At one time I thought labor and child birth was the worst pain. I did 36 hours of labor without any pain medication...yep, I was crazy.
The worst pain I've experianced was that of a gangrene gallbladder, sciatic nerve impingement that required surgery and a lung lobectomy to remove cancer. My worst flares are bone crushing painful, right up there in the worst pain category.

My everyday pain is tolerable, bad enough to know it is there...a nagging achy feeling, it is my new normal.

Every time I see my rheumy ( every 8-12 weeks) I have to fill out an evaluation form on my physical and emotional status. My pain level varies due to the weather or flares, and I will explain specifically what is bothering me and how long I'm stiff when I first get up. I always feel I'm handling things pretty well emotionally and the times I feel anxious about something, I let the doc know. Having a detailed form to fill out is a much better assessment of how I am doing that stating a number from 1-10.

Hugs, Robin
Posted 2/20/2013 2:18 AM (GMT 0)
In Fibro 101 there is a link with pain charts in it.  One is a description and the other shows how your face would be if you were in that amount of pain.  These are used in hospitals to help doctors know what pain you are feeling.  This would be the best way of describing your pain.  There is a journal in that link, too, and you could write your daily activities and record your pain according to one of those pain charts.  Then take the journal and the pain chart with you when you went to the doctor.  This can really help, I think.

 

Sherrine

Posted 2/20/2013 3:33 AM (GMT 0)
Most of my days are a 5 (nagging and hard to ignore). That's my tolerable level. I will hit as high as an 8 at times, very few 10s (tears pouring down my face).
Lately I've actually been at a 2 & 3. I'm in heaven. :)

I think the faces they use at the hospitals is just right for me.

Right now I've got a headache of a 3 and a neck pain of 6. :(
Posted 2/20/2013 5:09 AM (GMT 0)
I know logically that the charts are useful, but I have a hard time with them too...maybe because I don't have a natural affinity for numbers. Also, my pain changes from moment to moment, and I realize that I'm not always consciously aware of all the different types of pain or discomfort that are bombarding me, so when I'm asked for a number, it confuses me. (But then, so many things do ;)

Once I found a really funny pain chart, with a face that was practically decomposing towards the end, and descriptions like, "Are you crazy? Help! I'm dying here! No one has ever felt this much pain!!!" I tried to copy and paste it here, but for some reason, it didn't work. Ah well.

Debbie
Posted 2/20/2013 3:55 PM (GMT 0)
When I went to a pain management clinic a few years ago the 10 on their pain chart meant you were going to the ER for IV pain meds. Based on that "definition" the highest my pain has been is a 9.75, my costochondritis was so horrible that I had one foot out the door to go to the hospital but since I don't like taking drugs I didn't go and just waited for it to pass. I later learned from a friend that worked at the Rehab Institute where I had the pain management that they consider an 8 natural childbirth. At the time I couldn't believe that was true. 10 months ago when I experienced natural childbirth I then believed it and would consider childbirth lower than an 8. I found that labor and delivery were way less painful than some of the pain I experience with Fibro.
Posted 2/20/2013 4:30 PM (GMT 0)
A '0' is no pain.

A '10' is constant and brutal, not able to move or do anything other than be in pain.

I would only say I have hit 10 once, when I had a gall bladder attack and was hospitalized. I was moaning and writhing unconsciously until they administered painkillers.

Even my last hospitalization was an 8, I would say. I had two open MRSA spots on my left leg when I was finally admitted to the ER, and though the pain was intense it was localized. I couldn't walk, and the spots burned and were swelling, but because the pain was localized, it was more bearable.

Sometimes I will get headaches that I classify as high number value. Again, my referent is mobility and consistency. If you cannot move or do anything, and the pain is constant, it's a bad thing.

Therefore, the middle numbers are for increasing pain, and the lower numbers are for pain more than the ordinary. As fibro patients, we have some pain, more or less, daily. I generally start at 1, rather than 0, because I am always feeling some discomfort.
Posted 2/20/2013 5:11 PM (GMT 0)
I'd say my pain level used to vary from say 4 to 8, depending on what parts of me were acting up at that given moment.

Nowadays, I'd say my pain level is typically 0-2.... and even if its a 2, its most often due to my workout the day before.... or dental issues.

Fish
Posted 2/20/2013 9:49 PM (GMT 0)
Oh yes, gallbladder failing and causing my liver to slowly start to fail was a 9. I'm superstitious about the 10. I don't use it because there could always be something worse. In some ways this could hurt me because I tend to downplay pain. It takes a lot for me to be willing to admit that a trip to the er may be necessary.
I went through natural childbirth and it was nowhere near the gallbladder pain. My fibro flare ups can be bad. I don't think I've ever rated one more than a 7. I guess it's just the way I was raised and I know we all perceive pain so differently.
Posted 2/21/2013 2:00 PM (GMT 0)
Tracking general overall "Pain" on a level of 1-10 is better than not tracking at all... but it is far from the best or most effective means of tracking. The pain faces that are used throughout the medical community are the "Wong-Baker Pain Faces" and have been a standard since the late 1970s.

It is best to track your different specific symptoms, causal factors and life events. Tracking specifics rather than overall general pain is far more effective as it provides valuable insight into how specific symptoms may interact and thus better help you to focus your treatment efforts by targeting causal symptoms.

Pain diaries and paper forms are certainly better than nothing... but they are not very effective as analysis tools. They are limited in their ability to paint an accurate picture of how all your symptoms look and progress over intermediate to longer time frames. When you have a stack of 5-10 "Pain Diary" full notebooks lying on the floor - what do you do with that? Its not a format that facilitates mining and utilizing the data. Also - completing forms at a doctors visit means your relying upon memory. Can you really remember all of your different symptoms and how they have progressed and interacted day to day over the past month when you visit your doctor and fill out the form?

Detailed and interactive (meaning clickable for more data) charts and graphs are far better. Interactive reporting that is easily shared with your care team and that makes the process of deeper analysis both faster and easier enables your care team to better understand how your individual fibromyalgia is functioning overall in your body. It can increase the quality of care you receive but it also greatly aids your own management efforts.

This stuff is my full time professional career. I have written a book on it and dozens of articles and worked with many experts, researchers and doctors. I would love to share my free ebook and articles on this topic... but it is unfortunately not allowed.

I do highly recommend the book "Paintracking" by Dr. Deborah Barrett. I will be the first to say that her book on this subject is better than my book! I have a very helpful and informative video interview with Dr. Barrett on my blog... but cannot share a link. Sorry.

Medical technology is making huge advances in the realm of real time symptom data collection and shared analysis. This is fostering a level of research that has not been possible in the past and is very exciting.

Terry

Post Edited (FibroTracker) : 2/21/2013 7:06:40 AM (GMT-7)

Posted 2/23/2013 6:02 PM (GMT 0)
I saw on the pain scale that a 7 meant pain interfered with your daily activities. Based on that, my lowest level of pain is a 7. But I never put that on forms. Usually I use a 5-6.
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