Porphyria Educational
Services Bulletin
Vol. 2 No. 44 November 5, 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
