Porphyria Educational Services
Porphyria Educational Services Bulletin Vol. 2 No. 33
August 20, 2000
FOCUS: Chronic Pain and Porphyria
It has been said by the majority of hepatic porphyria patients
that true blessings are the days that their pains subsides. Many
porphyria patients are living with chronic pain.
And so just what is this chronic pain?
The word pain describes everything from a toothache or persistent
headache to loss of a loved one, or even used to expressed
displeasure with unruly children.
Pain is an experience. It is universal, complex and unique to
each person who feels it. Pain does have it's good aspects! By
having pain you are being told that there is something wrong or
injured. Such pain goes away when the problem heals. But chronic
pain is persistent discomfort Often porphyria pain is difficult
to ease and often has no obvious cause. Porphyria researcher are
still today unsure of the cause of the abdominal pain associated
with the acute hepatic porphyrias.
It is known that chronic pain exacts a high toll on the
individual patient. In addition it also places a toll on the
patient's family, friends and on the health care system. It also
plays a role in the patient's workplace and their productivity.
Chronic pain associated with porphyria is very limiting. Such
pain limits functioning in everyday activities, which leads to
loss of conditioning and other changes. Often porphyrics with
constant pain face depression.
As pain continues endlessly it produces discouragement and
frustration. Such discouragement or frustration will aggravate
the pain. This is a vicious cycle.
The changes caused by pain, when combined with sleep problems,
medication side effects, mounting medical expenses and strain on
important relationships, can have a profound effect on a person's
mental and physical well being.
When a porphyria patient begins to explain their pain it is
important to realize that there are two types of pain: acute and
chronic.
With the acute pain, it is a type of pain that is triggered by
tissue damage. It may be slight and last a moment, ro for a few
weeks or maybe a couple of months However with acute pain, the
source is obvious and the pain eventually fades away.
Contrastly chronic pain is a type of pain that can result from
injury or it can occur for no apparent reason. Such is the case
with the chronic pain that is experienced by mnay porphyria
patients. It can occur for no apparent reason.
Chronic pain can be mild or severe. It can hurt all the time, or
it can come and go.Unlike acute pain, it is often more difficult
to find a cause for chronic pain. In addition chronic pain can
last an indefinite period of time, in some cases years or
decades.
With the upper right quadrantr abdominal pain which is
experienced by so many porphyria patients, usually in a matter of
hours of the administration of glucose, pain will subside or go
into complete remission.
Neuropathic pain is also a part of porphyria. This pain can be
somewhat reduced by the use of Neurontin which is used to curtail
seizure activity in the porphyria patient.
Besides porphyria chronic pain, some pporphyria patients will
experience chronic pain from other medical conditions that they
may have such as arthritis: Inflammation of joints, back pain,
muscle strain, nerve damage, muscle loss, osteoporosis, or a
herniated disk
Some specific chronic pains comes is located in the mouth, and
jaw. Often along with this is face pain: Dental pain is another
factor. Neck pain: Muscle strain, nerve or joint problems.
With porphyria there is often Peripheral neuropathy: Here you
will find a porphyria patient with Tingling, numbness and pain in
the hands and feet.
Having chronic pain often causes the porphyria patient to
experience inactivity. Inactivity can cause weight gain and loss
of strength and stamina.
Loss of sleep can cause irritability, fatigue and dependency on
medications and alcohol in an attempt to facilitate sleep.
Mood swings can lead to damaged relationships, depression,
inability to handle stress, and difficulties at work and at home.
Financial strain also can result from efforts to meet medical
bills, pay for medications and loss of income due to time off
from work.
While porphyria patients are to avoid alcohol, some porphyria
patients have a Chemical dependency resulting from chronic pain.
Reliance on medications can impair clear thinking, cause physical
complications and emotional distress.
Choices for pain medications for use by porphyria patients are
very limited.
Alternative solutions such as hot tubs, massage, exercise and
electric mattress covers along with the use of a TENS unit can
greatly benefit a porphyria patient.
Rachel Wood NP, Chronic Pain Therapist