Describing your pain

You know that when you visit your doctor you've only got a limited time to get your story out, receive advice and possible treatment before the next patient is impatiently tapping his feet. All the better then to have your story planned out (on paper if necessary)before you go in: better for you, (you won't have forgotten anything) and better for the doctor, who always likes to receive a complete picture from the patient.
If your neuropathy is giving you a lot of pain, the following article from aidsetc.org (see link below) will help you get your thoughts in order and give the doctor a clear and medically accepted picture of exactly how your pain is progressing.

Pain Syndrome and Peripheral Neuropathy
Guide for HIV/AIDS Clinical Care, HRSA HIV/AIDS Bureau, January 2011

Self-report is the most reliable method to assess pain.

The patient complains of pain. The site and character of the pain will vary with the underlying cause. Ascertain the following from the patient:

Duration, onset, progression
Distribution, symmetry
Character or quality (e.g., burning, sharp, dull)
Intensity
Severity (using the 0-10 scale; see below)
Neurologic symptoms (e.g., weakness, cranial nerve abnormalities, bowel or bladder abnormalities)
Exacerbating or relieving factors
Response to current or past pain management strategies
Past medical history (e.g., AIDS, diabetes mellitus)
Psychosocial history
Substance abuse and alcohol use history (amount, duration)
Medications, current and recent (particularly zalcitabine, didanosine, stavudine, and isoniazid)
Nutrition (vitamin deficiencies)
Meaning of the pain to the patient

Measuring the severity of the pain: Have the patient rate the pain severity on a numeric scale of 0-10 (0 = no pain; 10 = worst imaginable pain), a verbal scale (none, small, mild, moderate, or severe), or a pediatric faces pain scale (when verbal or language abilities are absent). Note that pain ratings >3 usually indicate pain that interferes with daily activities. Use the same scale for evaluation of treatment response.

Figure 1. Faces Pain Rating Scale (0-10)

Quick screen for peripheral neuropathy: Ask about distal numbness and check Achilles tendon reflexes. Screening for numbness and delayed or absent ankle reflexes has the highest sensitivity and specificity among the clinical evaluation tools for primary care providers. For a validated screening tool, use the ACTG Brief Peripheral Neuropathy Scale (BPNS) to scale and track the degree of peripheral neuropathy.

O: Objective
Measure vital signs (increases in blood pressure, respiratory rate, and heart rate can correlate with pain). Perform a symptom-directed physical examination, including a thorough neurologic and musculoskeletal examination. Look for masses, lesions, and localizing signs. Pay special attention to sensory deficits (check for focality, symmetry, and distribution [such as "stocking-glove"]), muscular weakness, reflexes, and gait. Patients with significant motor weakness or paralysis, especially if progressive over days to weeks, should be evaluated emergently.

To evaluate peripheral neuropathy: Check ankle Achilles tendon reflexes and look for delayed or absent reflexes as signs of peripheral neuropathy. Distal sensory loss often starts with loss of vibratory sensation, followed by loss of temperature sensation, followed by onset of pain. Findings are usually bilateral and symmetric.

A: Assessment
Pain assessment includes determining the type of pain, for example, nociceptive, neuropathic, or muscle spasm pain.

Nociceptive pain occurs as a result of tissue injury (somatic) or activation of nociceptors resulting from stretching, distention, or inflammation of the internal organs of the body. It usually is well localized; may be described as sharp, dull, aching, throbbing, or gnawing in nature; and typically involves bones, joints, and soft tissue.

Neuropathic pain occurs from injury to peripheral nerves or central nervous system structures. Neuropathic pain may be described as burning, shooting, tingling, stabbing, or like a vise or electric shock; it involves the brain, central nervous system, nerve plexuses, nerve roots, or peripheral nerves. It is associated with decreased sensation and hypersensitivity.

Muscle spasm pain can accompany spinal or joint injuries, surgeries, and bedbound patients. It is described as tight, cramping, pulling, and squeezing sensations.

Although pain in HIV-infected patients often results from opportunistic infections, neoplasms, or medication-related neuropathy, it is important to include non-HIV-related causes of pain in a differential diagnosis. Some of these other causes may be more frequent in HIV-infected individuals.

http://www.aidsetc.org/aidsetc?page=cg-801_pain

...and to get an idea of what sort of pain medication you may receive, according to the seriousness of your problem, you can refer to this table adapted from World Health Organization. Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee. Geneva: World Health Organization; 1990.