Porphyria Educational Services

PORPHYRIA EDUCATIONAL SERVICES BULLETIN
Vol.2 No. 24 ~ June 11, 2000
FOCUS: [1] PAIN IN PORPHYRIA [2] A PORPHYRIA PAIN SCALE

One of the most common symptoms or signs assicated with porphyria and especially the peripheral neuropathy that accompanies porphyria in many patients is that of pain.

So what is pain?

Pain is an uinpleasant sense caused by signals from some nerve endings. It is a basic symptom of inflammation and is an important clue to the cause of many disorders.

Pain may be mild or severe, chronic, acute, cutting, burning, dull, or sharp, exactly or poorly located, or referred.

And what about pain assessment?

Pain assessment is an examination of the things that make a porphyria patient's pain worse or better. It is used todiagnose and treat disease or injury. Reactions to pain vary widely among different people and depend on many different physical and mental factors.

And what is a pain threshold? The pain threshold is the point at which a stimulus, usually one linked to pressure or temperature, starts pain receptors working and causes a feeling of pain. A porphyria patient with a low pain threshold will have pain much sooner and faster than patients with high pain thresholds.

Diana Deats-O'Reilly AIP/PCT Porphyria Educational Services


PORPHYRIA PAIN SCALE
0 = Pain Free
1 = Very minor annoyance - occasional minor twinges. No medication needed.
2 = Minor Annoyance - occasional strong twinges. No medication needed.
3 = Annoying enough to be distracting. Mild painkillers take care of it. (Aspirin, Ibuprofen.)
4 = Can be ignored if you are really involved in your work, but still distracting. Mild painkillers remove pain for 3-4 hours.
5 = Can't be ignored for more than 30 minutes. Mild painkillers ameliorate pain for 3-4 hours.
6 = Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.
7 = Makes it difficult to concentrate, interferes with sleep You can still function with effort. Stronger painkillers are only partially effective.
8 = Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.
9 = Unable to speak. Crying out or moaning uncontrollably - near delirium.
10 = Unconscious. Pain makes you pass out.


~Ron Kelly, HCP Porphyria Patient