©Marilyn Kerr RN 1997-2001

I began writing on this subject back in March '97 in response to the many comments made by patients that doctors weren't believing them when they were asked to quantify their pain.

As a nurse, I must say that a patient's pain level and tolerance to it is absolutely a part of a patient's disease. And, of course, it is wonderful that the government has now decreed that each patient be asked their pain level on admission and at regular intervals. Most Critical Care RN's that I know have been doing that for over 25 years.

First, a little background on pain levels. When I began searching for documentation of assessing pain levels and when to treat them back in January '97, I couldn't find anything even close to those that were being used in the public sector, so I had to fall back on my nursing experience.  If you provide your doctor with your own version  of a Pain Scale and insure that he uses yours, the following is the Pain Scale he and all other medical personnel use routinely.  I applaud patients who have "made" their own Scale, but please realize that "regular" medical professionals won't know or care of its existence. Knowing the following Pain Scale will insure that you and medical personnel are on the same page when discussing your pain.

We are often asked for our pain levels on a scale of 0-10, with 0 being absolutely no pain, and 10 being the worst pain you have ever experienced in your life. It's all very subjective, but, over the years, has remained a mainstay. Even being subjective, doctors and nurses are taught that a person's pain is a person's pain - it's real and must be treated as such. However, in the chronic pain that often accompanies FMS, Lyme, and CFS, one could assume that many doctors' training are being skewed by their own biases.

Pain levels between 1-3 are tolerable, i.e., they don't interfere with everyday functioning. In a hospital setting, we generally start heading to the medication cart when folks say they have a 3 level. The goal is to keep patients from going to higher levels. That should be your goal, too. It's called "breaking the pain cycle."

At levels 4-6, the pain is troublesome and is being perceived consciously, thereby causing stress. In a hospital setting, we see the patient starting to get restless and perhaps irritable. They're not smiling. They may not volunteer that they are in pain, but as they get closer to the 6 level, it's pretty clear. The pain must be treated at this point, because it will only get worse and will be harder to bring down to the level of 3 or below.

At levels 7 and higher, the patient is complaining of the pain and it will require more or stronger medication to bring them quickly down to a tolerable level.

At level 8, they're usually moaning and writhing and, needless, to say, crying and/or screaming at levels 9 and 10.

One study I found stated that doctors and nurses usually underestimate a patient's pain level by one or two levels. While sad, that's not too bad - considering. <s> And it's something to remember when you sense you've met disbelief in the eyes/attitude of your medical professional.

I would assume that most folks wouldn't bother going to the doctor if their pain level was between 1 and 3. A couple of Advils, and the pain would be eliminated. However, after weeks or months of taking maximum daily doses of our favorite analgesic with little or no relief, then we go to the doctor. Has the duration of the unabated pain changed the level?

In "Aspects of fibromyalgia in the general population: sex, pain threshold, and fibromyalgia symptoms" by Wolfe F. et al, J Rheumatol, 1995 Jan, 22:1, 151-6: CONCLUSION. Symptoms of FM are correlated with pain threshold in the general population, but tender point counts correlate better than dolorimetry. These 2 measures of pain threshold assay different but overlapping factors. Pain threshold is lower in women; and women have more FM symptoms. Decreased pain threshold correlates with all of the symptoms of FM, even in those who do not meet criteria for the syndrome. **This suggests that decreased pain threshold, as measured by the tender point counts, is an intrinsically important aspect of patient distress,** regardless of the extent and kind of concomitant disease; and that much can be learned about patients by employing this examination. To me, this just "proves" the pain cycle theory that when left untreated, pain becomes paramount because of the continued distress it causes.

Then, there's this one: "Fibromyalgia in women. Abnormalities of regional cerebral blood flow in the thalamus and the caudate nucleus are associated with low pain threshold levels." Author Mountz JM et al: CONCLUSION. The findings of low regional cerebral blood flow and generalized low pain thresholds support the hypothesis that abnormal pain perception in women with FM may result from a functional abnormality within the central nervous system.

I think it is very true that many of us are going through our daily lives with pain levels between 4-6. (Our online survey shows it.) It's there. We treat it as best we can. And, if nothing else is going on (like family crises or overwhelming fatigue), we are able to manage day to day. We may be groomed and dressed. However, weeks and months of that is beyond most medical professionals' ability to grasp, in my opinion. It has fallen to us to educate them.

If I were to walk into my doc's office and, when asked, tell him I have a pain level of 7-8 because of muscle spasms in my back that I haven't been able to "break," I know he may be thinking "6-7." But he can then feel the spasms and he knows that the pain needs to be addressed. If I constantly came into his office looking well-groomed, able to work a full week, and saying my pain level is at an 8, he probably would not trust my assessment.

Please don't accept comments that demean your pain. Assess how you explain it, try to remove any exaggeration on your part (hey, even I've done it!), and help your doctor understand just where you are in the pain scale.

I would also suggest that if your pain is not being adequately addressed by your usual doctor, people with our diseases who have availed themselves of Anesthesiologists who are Board Certified in Pain Management seem to be doing much better than others.

Unfortunately, these Pain Doctors come in two varieties: Those who suggest a regimen of exercise and lessening of whatever pain medications you're using and those who will treat the cause of your pain and/or adequately control it. I prefer the latter.