Jenna’s Lyme Blog

Discussion about personal pain can become heated and ugly when someone who suffers feels misunderstood, which happens frequently for people who suffer with Lyme.

It is perfectly understandable.

People want to empathize, they want to comfort others in pain by sharing their own experience whether it is even remotely similar, which with Lyme is rare.

A Google search for the “scale of pain” returned almost 15 million results!  Fortunatelty for me I found the reference I was looking for very quickly in Wilipedia and published by “Tipna” -( A Blog dedicated to learning, sharing and caring for others from around the world.”  The folllowing is a close replication of an article written by Jack Harich in July of 2002 entitled, “The Comparative Pain Scale” and is most pertinent for those of us suffering with Lyme disease.

A bit of web research shows there is actually no definitive pain scale in use in the medical industry today. The best I could find was an article on Elder Pain: Assessment of Intensity (this link is now broken). This listed several scales, none of which had uniform, objective descriptions of pain per level. For example, the Verbal Description Scale (VDS) uses these words to describe pain levels:

0 = No pain
1 = Mild pain
2 = Discomforting
3 = Distressing
4 = Intense
5 = Excruciating

Or from the Mayo Clinic the scale goes from 0 - 10:

0-1 No pain
2-3 Mild pain
4-5 Discomforting - moderate pain
6-7 Distressing - severe pain
8-9 Intense - very severe pain
10 Unbearable pain”

But what is mild to one person may be terrible to another. Or if you are feeling tired one day and not the next, pain may feel worse when tired, due to the very subjective nature of the descriptive words. One complaint about this scale is “Patients tend to use the middle words and thus distort the assessment.”

It also seems that many attempts to connect the level of pain to the ability to function socially and professionally is made much more difficult because the patient’s suffering is affected by other symptoms of Lyme disease such as fatigue, swollen joints, and dizziness to name a few; where specialists have yet to satisfactorily untangled the symptoms between normal pain and “neuropathic” pain and even “neuropychiatric” pain.

“What’s the difference?” You may ask, “I’m in excruciating pain and frankly I don’t care where on the scale my pain falls, I just want relief from it all!”  And indeed, many Lyme victims are driven to take their own life as a result of the frustration of relentless, intense pain.

Thus a new pain scale (see below) needs to be developed. Use of it would give pain ratings that would be more reliably compared, both from patient to patient, and from day to day on the same patient. It is objective and repeatable because it compares your pain to a known level of pain or behavioral symptoms. The scale is logarithmic. Note that above level 4 you cannot adapt. Note that your pain level probably varies. The descriptive words describe pain intensity, not type of pain.

The two end of the scale, zero and ten, are the two possible extremes. I first described them, then worked up from zero, and when I got to about four I started working down from ten. Eventually the gap closed, fidgeting was done, and the result is hopefully a smooth logarithmic curve and an easy to use scale.

To use the scale, first determine if your pain is Minor, Moderate, or Severe. Then look at the levels within that group and select the one the comes closest to describing your level of pain.
Comparative Pain Scale

0    No pain. Feeling perfectly normal. Minor - Does not interfere with most activities. Able to adapt to pain psychologically and with medication or devices such as cushions.

1    Very Mild. Very light barely noticable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.

2    Discomforting.  Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people predictably react differently to this self-test.

3    Tolerable. Very noticable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the     time you don’t notice the pain. You have adapted to it. OR, Moderate, Interferes with many activities. Requires lifestyle changes but patient remains independent. Unable to adapt to pain.

4    Distressing. Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and     cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the similated     pain is initially piercing but becomes dull after that.

5    Very Distressing. Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it     that you normal lifestyle is curtailed. Temporary personality disorders are frequent.

6    Intense. Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social     relationships. Comparable to a bad non-migriane headache combined with several bee stings, or a bad back pain. OR, Severe.  Unable to engage in normal activities. Patient is disabled and unable to function     independently.

7    Very Intense. Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone.     Comparable to an average migraine headache.

8    Utterly Horrible.     Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and     sometimes tried. Comparable to childbirth or a real bad migraine headache.

9    Excruciating and Unbearable. Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in     life whatsoever. Comparable to throat cancer.

10    Unimaginable and Unspeakable.     Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and     lost consciousness as a result of the pain and not blood loss, have experienced level 10, or those with Lyme disease.

Pain is inherently subjective, however, in medical treatment, the goal is to deal with a patient’s own description of pain and not what is, or is not apparant.

“Since 1973, the multidisciplinary pain clinic has come into its own. Many clinics now offer a variety of therapeutic approaches to effective pain management, including physical therapy, acupuncture, “TENS” (transcutaneous electronic nerve stimulation), hypnosis, behavioral modification, and many evolving therapies based on more sensitive technologies.

The following recommendations are excellent. Richard Sternbach, of the Pain Treatment Center at Scripps Clinic and Research Foundation in La Jolla, offered these 7 steps on how to live despite pain in his pamphlet (How Can I Learn to Live With Pain When It Hurts So Much?, revised in 1983):

1. Accept the fact of your pain.

2. Set specific goals of work, hobbies and social acitivities towards which you will work.

3. Let yourself get angry at your pain if it seems to be getting the best of you.

4. Pace your activities. Get in shape, and keep fit. Learn to relax, and practice it.

5. Time your medications, then taper off them.

6. Have family and friends support only your healthy behavior, not your invalidism.

7. Be open and reasonable with your doctor.”

For those of us with Lyme disease, the list above seems horribly understated.  With suicide listed as a common conclusion to those suffering from the pain caused by Lyme disease, one can only imagine the darkness and despair of our suffering.  But again, even amongst those who suffer from pain in the Lyme community, you have those on one side of the spectrum who can function like a normal person, and on the other side of the spectrum you have a younger, healthier looking Lyme infected victim who is days away from taking his or her life.  The enormous differences in pain can certainly not be measured by our inept eyesight, or even a sophisticated questionaire.

How can those in pain be helped?  I have listed some extremely helpful supplements on www.Lyme DiseaseResource.com under “Relieve Symptoms” (which I am the first to admit is a overly optimistic heading - for some people there is simply NO RELIEF!).  But listed within several of those tabs is a product, GABA,  that I could never live without - even though my medical doctors have done a commendable job of working together, and working “outside of the box”.  I am continuously amazed that so few in the Lyme forums have even heard of GABA, let alone having tried it!

If you are in pain and/or suffer from anxiety, please buy a bottle of this amino-acid inhibitor here.

Please share your story of Lyme pain and how you manage it.

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Posted on December 3rd, 2008 under Chronic Lyme Disease, Coping with Lyme Disease, Product Reviews • Tags: Chronic Lyme disease, Suffering With Lyme Disease, Symptoms of Lyme disease. • RSS 2.0 feed • Leave a response, or trackback