One of the touchiest, trickiest aspects of dealing with long term chronic disease is pain management. Many people who suffer with a chronic disorder possess a limited understanding of the impact on a body system from pain alone. Many of us suffer needlessly, accepting the bare minimum in pain management out of fear of addiction or a doctors reluctance to prescribe adequate relief.
Pain management is not just about prescribing pills, syrups or patches. It is about treating your pain in such a way that your quality of life is significantly improved. Chronic unmanaged pain creates stressors on the cardiovascular system, weakens your immune response and causes emotional lability in most patients.
In people who are not dealing with chronic disorders, sudden severe pain usually alerts them that something has gone wrong in their bodies. Normally 24-48 hours is enough to send them to their physician or E.R. In chronic pain patients, the treatment is often very different, with the doctor assuming unless the patient complains enough, that things are fine. The patient, worried the doctor might think they are weak or just whining, and not educated enough about pain management, suffers needlessly, using only over the counter medications.
There is also the specter of potential addication, an unspoken topic too often between patient and physician. Many physicians are not comfortable in dispensing narcotic pain medications, and in fact in the past 15 years, have had to take classes to learn how to address this issue in a humane and responsible fashion. And patients have had to learn how to differentiate between pain caused by their disorder and stress induced pain.
The signs of pain that is not being treated adequately are:
Irritabilty, weepiness and fatigue
Elevated blood pressure
Tachycardia (rapid heartbeat)
Changes in weight
Overuse of OTC medications
Over time these signs worsen and the patient becomes increasingly restless, defensive and angry. At this point a patient can go see a psychiatrist who specializes in pain assessment and control, or visit a pain clinic. When I was first diagnosed with Crohns Disease, I obtained a referral to a pain psychiatrist. Throughout our visits, we discussed what things were important to me as a human being, in order for me to cope with this disease and still lead a “normal” life. The doctor defined for me what chronic pain was, and also prepared me for the very real possibility I had other unresolved chronic disease. Chronic pain is defined as pain that lasts more than 8 hours per day, and occurs at least 5 days out of 7. The pain must be significant enough to impact a patients ability to carry out “normal” and routine tasks.
I was taught that when a pain cycle reaches a level 6 out of 10, that over the counter medications become useless, not to mention potentially dangerous. Acetominephen toxicity can be reached quickly with the ingestion of 8 tablets per day. Ibuprofen can cause cardiac problems as well as increased G.I. bleeding with an 800 mg. 4 times per day dose. And aspirin overingestion can lead to outright abdominal hemorrhaging, ulcers and severe stomach pain.
Because the medications prescribed to treat conditions such as Crohn’s and lupus often carry the same set of side effects, it was quickly decided I was going to be on a narcotic analegisic daily. We discussed the varying levels of pain narcotics available, discussed how much pain I was willing to live with, while still being considerably more comfortable than I had been.
My biggest fear then, as it is now, was what happens if I reach an end stage chronic pain level of 9-10? Based on that fear I chose Tylenol with codeine at 30 mgs up to 3 times a day. If I didn’t need it, I wouldn’t take it. It worked very well for over 20 years without any addiction issues on my part. Why? Because I practiced a continual self awareness about why I was reaching for the codeine. Was it really the pain getting to me or was I simply upset? I would put off taking it until bedtime many many days, unless the pain reached a 7 on the pain scale.
Most days instead of 3, I’d take one or often none. Things changed around 2000, with a dramatic shift in pain pattern and intensity. I often found some days I’d take 3 or 4. My internist wanted me on a higher level of pain medication which I refused until 2001 when I accepted a smaller prescription for Vicodin, along with the codeine. I used the Vicodin on days when the pain had gotten unmanageable.
The physician, impatient with my refusal to accept adequate pain relief, called a family meeting. He explained as these diseases advance the damage, the pain becomes more constant, the heart is taxed more, and blood pressure can reach dangerous levels, so that good pain management is a must. He explained that the more the body is stressed by pain, the more quickly it utilizes the pain medication. Therefore a blood serum level must be maintained to stop the cardiovascular chain reaction caused by the pain. He explained addiction with this level of pain is extremely rare, and that your body will let you know if you’ve taken the medications without cause, by inducing nausea, sweating and vomitting.
Today I live a much more comfortable productive life, thanks to skilled pain intervention. My dosage is much higher, and I have access to “breakthrough” pain medication. Breakthrough pain is pain that breaks through your normal cycle of pain relief. It is often a warning sign of serious problems, and the drugs used to treat it are dispensed in much smaller quantities. Normally unless you’re a cancer patient, these drugs are designed to bring the pain back within liveable boundaries, then put aside, until needed again. As a rule, having to use more than 3 breakthrough pills, requires physician intervention to make certain a crisis isn’t developing due to your disease.
As a patient who lives with chronic pain, you must learn to be your own advocate. Read, research and understand the things that make your days worse and what helps make them bearable. If you have a physician who is unresponsive to your needs, it’s time for a change. Good pain management can totally change your outlook about yourself and your life, as it frees you of enough pain to start seeing the true beauty life holds. Thanks to my ability to control the pain, I live a life that encompasses writing, enjoying my children and being a much more positive person.