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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