PainOnline.com

Pain Online - Central Pain Survey

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Dear Central Pain patient,

Thank you for completing the following questionnaire. Its results are very helpful in research and in making physicians comfortable with the "bizarre" nature of our pain. We are trying to help them come to think of nerve injury pain as "NOT" bizarre, just different from pain due to the flesh or body.

Your Name: (optional)	(If you do not wish to include your name, please just type in your age and sex, eg. 58 year old female)
Email Address:	(We need this so others don't accuse us of making up the data - it does not matter if your address will change except that you will not then be able to receive results of the survey. If you anticipate losing your email address, please provide your mailing address)

What is the name of the doctor or health center which treats your Central Pain?(optional)

Have you been diagnosed with Central Pain? (also known as Multiple Sclerosis Pain, Spinal Cord Injury Pain, Post-Stroke Pain, Syringomyelia Pain, Metastatic Invasion of the Spine or Brain Pain, terminal AIDS pain, Toxic exposure pain, etc.-anything that damages the nerves of the Central Nervous System)

Yes No

Please indicate which type of Central Pain you have, ie what type of injury or disease led to it. If you have a spinal cord injury or syringomyelia, please indicate the level (eg. C-5) or if a stroke, where it was located in the brain, if you know this information. If you have multiple sclerosis, please tell us how long you have had it and how long after other symptoms of MS occurred you began to have pain and where it first started (the eyes are the most common for pain, the chest the most common for muscle tightness or pulling sensation).

I am:
     Quadriplegic (paralyzed in all four extremities)
     Paraplegic (paralyzed in two extremities)
     Hemiplegic (paralyzed on one side of the body, common in stroke victims)
     Quadriparetic (weakness or control problems in all four extremities)
     Paraparetic (weakness or control problems in two extremities)
     Other loss of function such as abnormal behavior in bowel or bladder (eg. overfulness,          burning, uneven emptying)
     None of the above

Components of Central Pain Sensations

Muscle Pain. These vary, but the essence is some sort of increased tone. They tend to fall into two categories, those associated with movement (kinesthetic dysesthesia) or muscle loading, or those in which movement is not required (isometric dysesthesia) and are often constant. Many find themselves unusually "sore" only hours AFTER exercise.

I have the following muscle pain symptoms:
(check all that apply)

     Cramping
     Pulling
     Tearing
     Tightening
     Burning feeling when the muscle is used.
     The feeling I need to move to alleviate cramping (like too long a confinement sitting in          one place).
     The wish for someone to push into or massage a cramping muscle in an extremity.
     I find myself limiting movement to avoid pain.
     I find I am sore hours or more after attempts at exercise.
     Other description of symptoms regarding muscle pain:

Dysesthesia

This is the classic burning of Central Pain. It is the most common symptom. This symptom is most commonly felt in the extremities, generally becoming worse the further out of the extremity one goes. It can either be constant (spontaneous, without any particular stimulus) or the spontaneous burning can be evoked or elicited by touch (especially occlusive touch not permitting air circulation on the skin touched, or by temperature extremes, hot or cold. There is generally no delay for temperature evocation (eg. if one steps into a cold shower, the pain is immediate). The evoked burning is occasionally found alone, without any spontaneous burning. Unlike peripheral nerve injury where the pain of touch is instantaneous, the evoked pain of Central Pain usually requires 20-30 seconds to occur.

I have the following symptoms regarding Dysesthesia:
(check all that apply)


		Light touch is painful to me.
		Deep pressure not generally painful to me.
		The touch of clothing can cause me pain.
		Temperature change or temperature extremes cause burning pain.
		I have lost some of the sensation of fine touch.
		I have lost some of the ability to sense temperature change.
		If a newspaper or cloth is placed between what is touching me and my skin, it takes longer for the burning pain to heighten than if the touch is direct, or occlusive (preventing air circulation so that no skin cooling can occur).
		The burning pain is worse on the extremities (arms or legs) than the trunk or body.
		Even on the extremities, the burning pain increases in the areas further out on the extremity.
		The areas where burning is the greatest are also most likely to have the least distinct sensation of light touch.
		The areas distally on extremities where burning is greatest are also likely to have the least sensitivity to small changes in temperature.
		My burning is poorly localized, or feels diffuse rather than pin-pointed to a specific, small, area.
		My pain could be called a "flare", such as the flare which follows touching a hot stove, when after pulling away, there is a burning which is not pin-point but rather diffuse in the area which contacted the stove and extends beyond the area which actually touched the stove.
		I find I am sore hours or more after attempts at exercise.

For those whose burning extends as high as the face:
(If you have burning pain on the face, please complete the following section, otherwise leave blank. Check all that apply.)


		I have burning pain on my face
		I have burning pain inside my mouth and on my tongue.
		The burning on my face is greatest in the center area of lips tongue mouth, or nose, but becomes less severe as one moves back toward the jaw and ears.
		The ability to sense touch decreases where burning pain increases on my face.
		If I pay careful attention, I can tell the burning from light touch extends an inch or so beyond the skin which is actually being touched (eg if the skin of my buttocks burns where it touches the chair, I have burning a slight distance beyond where the skin is actually touching the chair).

Thermal Dysesthesia

Most but not all CP patients say that regarding temperature change, their cold receptors are the most sensitive to immediate stimulus. For example, the blowing of a car air conditioner on bare skin may more readily cause pain than the blowing of a heater, yet, paradoxically, as to ambient room or environmental temperature, a mildly cool temperature may promote skin cooling and therefore diminish anesthesia. This unusual phenomenon, which seems to have picked up a thermal system going two directions at once is called "allodysesthesia". The next four questions relate to "allodysesthesia".

I have the following symptoms regarding Thermal Dysesthesia:
(check all that apply)


		Cold air from a car air conditioner will cause pain more quickly than warm air from the heater.
		A mildly cool room temperature or environmental temperature makes my skin burn less from the contact of clothing.
		Sudden cold, such as stepping into a cold shower, hurts more now than before I acquired Central Pain.
		There have been times, when stepping into a cold shower, caused such severe "pins and needles" that it felt like I was being stung by bees or wasps.
		When it is very hot and humid, I am more likely to feel dysesthesia BEYOND the zone which is actually being touched.

Explanation: Thermal abnormality is included under dysesthesia here for the most accurate survey results, so you will know what is being asked, but it does not follow the ordinary rules of dysesthesia. One of the purposes of the survey is to help determine which symptoms belong under which category. As the questions imply, an example of allodysesthesia would be that regarding temperature change, most CP patients report that a direct blowing of cold air by a car airflow system on an extremity, or the placement of a cold plastic item, such as a keyboard, directly on the skin is not only more effective at evoking pain, it is also MUCH more rapid. On the other hand, neither of these events is normally painful, so this might indicate it should be surveyed under allodynia, but we classify it here under dysesthesia. The problem is that the burning from cold air blasts is dysesthetic (bizarre) while the stinging, when present is NOT so bizarre, but feels very similar to normal insect stings.

Atopoesthesia

This big word just refers to the loss of touch sensation in the areas where the burning is greatest. It causes an effect on the ability to tell where the surface boundary line of the skin is precisely in three dimensional space, except when the skin is burning.

I have the following symptoms regarding Atopoesthesia :
(check all that apply)


		My skin burns just deep to the surface of the skin.
		I cannot really tell exacty where the skin surface of burning areas is precisely, unless something is touching it.
		The actual size of my extremities (hands and feet) is not detected as well as before I had Central Pain.
		My perception of skin surface is so poor that just sitting without touching anything, I have a hard time sensing in my brain each of my toes or fingers distinctly.
		The lack of ability to sense body surface distinctly is also present on my lower legs or arms.

Hyperpathia

This word refers to the fact that certain things, especially pin prick, which are normally painful, are MORE painful in CP. Under hyperpathia, we talk about "delay with overshoot" which means the threshold for feeling pain has gone up, but when it is reached, the pain jumps out severely or "overshoots". You may never had considered hyperpathia since very small gradations of sharpness are needed to display it in some people. You might have to think this one over or even test yourself.

I have the following symptoms regarding Hyperpathia:
(check all that apply)


		Sharp things, like pins, seem more sharp after acquiring CP, even though I seem to have less sensation to light touch.

Allodynia

This term simply means that some things which would not be painful to normals can cause pain in CP. A good example would be the light touch which causes increased burning dysesthesia, as described above.

I have the following symptoms regarding Allodynia:
(check all that apply)


	Some things which were not painful to me before I acquired CP are painful to me now.
	These things include:
	Light touch
	Temperature change
	Temperature extremes

Shooting (lancinating) Pains

Unlike the other pains, which are thought to be carried to the brain via the spinothalamic tract and lack sensory discriminatory features, the shooting pains are well localized and very distinct. They are sometimes called "lemniscal" pains because they are thought to be carried in the back of the spinal cord where the "lemniscal tract" runs. Shooting pains are often described as electric jolts.

I have the following symptoms regarding shooting pains:
(check all that apply)


		I have shooting pains in my extremities.
		The shooting pains are more intermittent than the burning dysesthesia.
		Sometimes I have shooting pains in places other than my extremities.
		If I use TENS unit therapy, the shooting pains sometimes becomes more frequent.

Circulatory Pain

This is the common "pins and needles" or "prickling pain" which may be felt in Central Pain. When very severe, it may take on a sharpened edge, "like walking on broken glass".

I have the following symptoms regarding circulatory pain:
(check all that apply)


		I have spontaneous "pins and needles" much of the time.
		When the "pins and needles" is not present, it may be brought on more readily than before acquiring CP, by resting my arm or leg so that the circulation is decreased.

Peristaltic Pain

This is pain in the organs of the abdomen, such as the gut or bladder. It is basically a sense of overfulness, to which may be added cramping, bloating, nausea, or in the case of the bladder, burning.

I have the following symptoms regarding peristaltic pain:
(check all that apply)


		My gut feels overfull rather easily.
		I have some nausea when my gut feels overfull.
		My bladder burns sometimes when it has some accumulation of urine.
		My bladder always burns when it is full of urine, more so than before I acquire CP.

Loss of Working Memory

"Working Memory" has a more or less specific meaning to brain researchers, but here we use it to refer to distractibility, multitasking, or keeping several thoughts and activities going together.

I have the following symptoms regarding the loss of working memory:
(check all that apply)


		I have had the experience where sudden movement near me, distracts me from a motor task, like handling objects.
		I have had the experience where a voice or sound near me, distracts me from a motor task, like handling objects.
		When my visual field, such as looking at the TV, is suddenly interrupted, such as by someone walking between me and the TV, I feel very briefly that I have to work at visually locking back onto the picture or regaining my concentration.
		I feel less able to think about several things at once.
		I find I am more forgetful than before.
		I feel like my brain is more easily distracted than before.

Emotional Control

I have the following symptoms regarding emotional control:
(check all that apply)


		I have a harder time controlling certain emotions now, such as fear, anxiety, or depression.
		I have a feeling of forboding, or that bad things surround me, or lie ahead for me.

Family/Doctor Input

The following questions apply to how you feel toward family and doctors regarding Central Pain:
(please select the option that most closely matches how you feel)


	My family and those around me understand my CP reasonably well. Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree
	My family and those around have very little understanding of what CP means to me. Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree
	My Doctor understands my CP symptoms well. Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree
	My Doctor fully believes what I tell him or her about my CP. Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree
	My Doctor thinks I am maybe a little crazy when I try to explain my CP. Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree
	My Doctor has wasted time trying a lot of things for my CP that don't work. Strongly Agree Somewhat Agree Neutral Somewhat Disagree Strongly Disagree

Any Additonal Comments or Suggestions:

We would appreciate any other comments you may have regarding this survey.

I feel the following questions should be added to the survey:

Other features of my central pain not covered by this survey include the following: