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Mood swings, irritability, rudeness, and behavior changes are very common with most opiate patients, and for those who aren't trained, educated, or prepared for this side effect, it can cause the wrong impression. Another example is a Diabetic who is hypoglycemic, showing symptoms that can be mistaken for being drunk by those who aren't educated in the effects of the disease and low blood sugar levels.

Extreme chronic pain causes enough mental stress, though over time many patients' pain tolerance levels get much higher. Having said that, everyone has their breaking point, and no matter how strong you are mentally, you can't keep it up forever, even when using a strong and effective pain drug like Fentanyl.

The biggest problem is that it is unfortunately very common for caregivers, friends and family of the patient, as well as the patient, to not know or understand this key side effect, and that lack of understanding leads to unfortunate reactions and results for all concerned. Early on when I entered formal Pain Management and became a long-term opiate patient (13 years, 10 on Duragesic and many other high dose opiates), I educated my family on what to expect from the drugs I was using. Knowing that it's the medicine and not me has made it easier for them to deal with the periods of changes over the years, though of course difficult. Fortunately my wife is a VERY patient woman, as well as my daughter.

The main thing to remember is that it's normally not the patient's fault (unless the person is just a jerk by nature), and the combination of the side effects, pain, and frustration of the moment all combine to have a bad effect on the person's overall attitude. Knowing and understanding this, and being able to deal with it effectively (don't antagonize the person or brush them off, recognize the problem for what it is), goes a long way toward helping someone whose life already sucks. Though it's a quality-of-life decision, we all still feel like slaves, since there are strict regulations governing Duragesic usage and prescriptions. Add in the pain and normal problems associated with using opiates, and most patients' attitudes aren't that great to begin with.

The constant pain level for those of us who are Duragesic users can't really be put into words, but the best way I can describe mine (and my pain tolerance is extremely high) is that it feels like having a broken bone every waking minute of my life, and the pain won't go away no matter what I do. Think about a period in your life in which you've experienced the worst pain in your life, double it, then consider how edgy you'd be in a similar situation. Scientific? Hardly. But over the years I've experienced the best and worst in Pain Management and the medical profession (having been nearly killed once and having the bulk of my pain caused by 2 bad spinal operations) and the sad fact is that very few people understand the effects that Fentanyl and other opiates has on regular users.

Do Duragesic patients feel like they're better than other non-opiate patients? Of course not. But understanding the unique nature and effects of the treatment requires a bit more flexibility for those who are trying to help, and is much appreciated by the patient.

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15y ago

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