Porphyria Educational Services

PORPHYRIA EDUCATIONAL SERVICES BULLETIN
Vol. 2 No. 23 ~ June 4, 2000
FOCUS: PORHYRIA AND FATIGUE

Porphyria patients often find their lives filled with fatigue. The fatigue can seem as much a state of
mind as one of the body. There is a lot yet to know about this common symptom of porphyria, but we do know that fatigue may stem from both mental and physical causes.

At various times all people with a variety ot medical conditions will fell fatigue. Fatigue will appear whenever a muscle or a cluster of muscles has been used too much during exercise or other physical activity.

With porphyria patients often the stress of everyday life is the cause of fatigue. Quite often it is doing too much in too little time. The porphyric will push to get something done and then collapse in sheer fatigue.

When you ask a porphyic patient to describe fatigue it is often very hard to describe. Not only is fatigue hard to describe but it is also even harder to measure.

Many symptoms of porphyria can cause a feeling of weariness. Such fatigue can make finishing an activity very difficult. Fatigue can include slow physical movement, muscle stiffness, depression. In addiiton such fatigue can include changes in being able to move or sleep. At other times fatigue is experienced only when medications are wearing off.

Akinesia is often experience. Akinesia is an abnormal state of physical and mental inactivity, or the inability to move the muscles. This medical condition causes the porphyric patient trouble in starting a movement, and this conditions often feels like fatigue.

Porphyric patients who experience akinesia, must move slowly. They will also find themselves finding it harfd to finish a task in a regular amount of time. For instance, everyday tasks such as getting dressed can take a lot of effort. Many porphyric patients can keep track of the times during the day when their akinesia is better and their medications, such as neurontin, as working well. It is during these peak times of the day that porphyic patients can undertake the energy-consuming daily tasks, because their movement is easier.

Peripheral neuropathy due to porphyria is also to blame for much fatigue experienced by porphyria patients. PN symptoms such as muscle stiffness, cramping, tremors or seizure activity, and even the difficulty initiating a movement tend to put stress on a person's muscles.

Many porphyria patients when not adequately diagnosed with peripheral neuropathy due to porphyria, often consult rheumatologists thinking that their condition may be the beginning of arthritis or
fibromyalgia or fibromyositis. It is muscle fatigue.

Porphyria patients who experience seizures will find that constant shaking can quickly fatigue the muscles. Most anti-seizure medications are unsafe for porphyria patients. However luckily Neurontin also know as Gabapentin works fairly well for controlling seizures and also many patients report that the drug also reduces pain.

Neurontin can be used to treat the symptoms experienced by a porphyric patient, but also needs to be carefully monitored.

Atrophy is another thing that must be evaluated. Muscles that do not move enough become deconditioned and reduced in size. This is known as atrophy. The loss of muscle strength decreases stamina and endurance. Many porphyria patients describe this as fatigue as well. This is why some exercise needs to be a routine part of the daily life habits of a porphyria patient. It is well know that people who have exercise as a part of their daily routine experience less fatigue.

In visiting with many different porphyria patients one can find that there is a considerably large fluctuation in mobility. Most find that they experience fluctuations in their mobility throughout any given day. For those with certain drugs, these periods of fluctuation follow the dosing cycle, such as in neurontin. THe porphyric will experience an increase in symptons at the end of a dose.

Some porphyria patients state that they have their best relief from symptoms in the morning after being full rested from a long night's sleep. Such porphyics often try to get everything done in the morning when they feel well or at least better. They also know that they need to prioritze their day, because most porphyria patients have learned that with overactivity, they will fallto fatigue.

Another aspects of fatigue is that of depression. And depression is a common symptom among porphyria patients at one time or another. Fatigue is a typical symptom of depression. Porphyria patients often relate that they have a lack of motivation or a loss of energy. Again many anti-depressant drugs ar considered unsafe for the porphyria patients. However when a patient is treated with such a drug which is safe for them, they often begin to feel less tired. Once treatment has begun, the patient will also be more willing to participate fully in a day's activities.

Sleep itself is also a cause of fatigue. Many porphyria patients experience sleep disturbances. It may be due to a sleep cycle change, side effects from medications, the onset of an acute attack, restless legs, peripheral nueropathy pain or just the inability to get comfortable.

Sleep disruption or deprivation contributes to daytime sleepiness. Many porphyria patients because of this fatigue have a strong desire to take naps throughout the day. One short nap after lunch is considered feasible. Further napping may cause the porphyric patient to face more problems sleeping at night. It should be noted here that some medications which are used to treat sleep disturbances may also cause daytime fatigue. It is known as "you can't find"!

Now what to do with this problem of fatuigue. It is clear that fatigue is a problem for many people with porphyria. In order to get the best possible help for the problem of fatigue, a complete health history and physical exam must be undertaken. This is necessary to rule out non-porphyria causes. Sometimes problems that are not asociated with porphyria can be found.

When seeking medical help concerning the fatuigue a person should note when they feel fatigued, how long the feeling lasts, and how the fatigue fluctuates with their symptoms and their medications, as well as how badly they feel when it happens. The reason for noting these things is because it will help identify the reason for the problem.

Some common tips to help porphyria patients avoid fatigue including the following:

* Eat well, getting the right food and necessary carbohydrates for feeling strong and avoiding triggering of porphyria attacks.

* Participating in an exercise program which incorpates both stretching and aerobics.

* Practice good habits such as establishing a regular bedtime.

* Avoid frequent napping.

* Avoid stimulation at bedtime.

* Avoid use of caffeine.

* Be sure to keep yourself mentally active. It is a known factor that boredom leads to fatigue.

* Drink plenty of fluids.

* Be sure that you eat fiber, especially if you are constipated. Constipation encourages fatigue.

* Do the more strenuous daily tasks when your movement is easier.

* Know your limitations.

* Seek assistance when necessary.

* Avoid forcing too many activities into one given time period. This will cause fatigue.