SCD & Pain Meds #2: Tolerance, Dependence, and Addiction

Addiction to prescription pain medication is a serious issue in our country. In fact, more people are addicted to prescription pain medication that all other drugs combined excluding marijuana. As parents and patients, this is something we have to be aware of and fight against. Having said that, we need not allow fear of addiction to deprive those in need of pain relief. The key is to be both informed and disciplined. Part of being informed is understanding the differences between tolerance, dependence and addiction. Misconceptions about what each of these mean are held by medical professionals, patients, and the public in general.

Tolerance
Many people believe that individuals regularly taking pain medication will, over time, need more medicine to get the same relief. Based on the research I’ve done, the truth is this is not likely to happen. Building up a tolerance against the medication’s side affects is more typical.

The four main effects of prescription pain killers are: lessoning of pain, drowsiness, nausea, and constipation. Tolerance against drowsiness and nausea is what generally takes place. Lessening of pain and constipation remain the same for most people. This means constipation and pain reduction are controlled, and there is seldom a need to increase the dosage of the medication. [click here for more info.]

Patients who experience a constant level of pain, can have a consistent level of pain relief from the same dose of medication over a long period of time. The need for higher doses of pain killers is due to worsening of pain rather than building up a tolerance to that medication. [click here for more info.]

I personally have found this to be true. I have pretty much been on the same dosage of pain medication for more than ten years. Most of the time I don’t become drowsy or nauseous from my meds. They do what they are meant to, they reduce my pain. Constipation is an issue but, but it’s controlled with senna, a laxative.

Physical Dependence
If you experience withdrawal symptoms when you stop taking a medication, you have a physical dependence on it. This can occur with recreational drugs, prescription pain killers, anti-depressants and other medications. With continuous use of prescription pain medication, physical dependence is normal and to be expected. Understand, physical dependence is NOT the same as addiction. [click here for more info.]

Symptoms of withdrawal may include agitation, insomnia, diarrhea, sweating, and rapid heart beat. On occasion, I have experienced withdrawal symptoms when I have run out of my pain medication or gone twenty-four hours or more without taking my meds. My body most certainly has developed a dependence on my prescription pain killers. I do not, however, have an addiction to them.

Addiction
Physical dependence and tolerance relate to changes in the physical body. Addiction, however, is behavioral; it’s the use of drugs for non-medical reasons; it means a person is craving drugs not for pain relief but for mood altering effects.

Symptoms of psychological dependence can include:
•    Regularly using more of the drug than intended;
•    Difficulty cutting down their intake of the drug;
•    Becoming anxious about not having access to their substance;
•    Loss of interest in activities they once enjoyed;
•    Their abuse is interfering with work, family, or social responsibilities;
•    Lying or acting secretively;
•    Denial of drug use;
•    Forgery of prescriptions;
•    Theft of drugs from other patients or family members;
•    Selling and buying drugs on the street;
•    Using prescribed drugs to get high rather than for medical needs.

Pain medication should not be withheld simply for fear of addiction. Patients who use pain medication for authentic medical needs, in truth, are at LOW risk of becoming addicted; it is in fact extremely rare. [click here for more info.]

SCD & Pain Meds #1: Managing Prescriptions

I recently read a post on the Sickle Cell Warrior facebook page. Since childhood, this person’s mother has always given him his pain medication when he needed it. Though he is now twenty-one years old, he and his mother follow this same pattern. Their main reason in doing this is to prevent addiction.

The problem is, if he’s having a crisis while his mother is at work, he has to wait for her to come home so she can get the medication from her hiding place. Obviously, this is an issue because he has to wait for his mom to get home, thus prolonging and increasing his pain. While I understand taking precautions to prevent addiction, I don’t understand the logic behind this methodology.

One Week’s Worth
Teaching your children to become independent adults responsible for their own health care needs, is vital. Parents, after all, won’t always be there and patients need to learn early on how to manage their own medicine. May I suggest a couple ways you can help your child take charge of this aspect of their health care?

Like many things, baby steps is often the best approach. Rather than just one day handing your adolescent an entire bottle of pain medication, give them a week’s worth of pills, or a few days. This will allow you to monitor how quickly he/she goes through their medication. As they demonstrate to you their responsibility to self-administer, increase the amount you allot them. In time, they will prove to you, and themselves, that they able to handle that part of their health care on their own.

Calendaring
One of the methods I use to monitor my pain medication intake is by calendaring out my medication. Long ago, I purchased a five week long pill container. As you can see from the photo, I have numbered one container for each day of the month. Each container has four slots to separate daily doses of medication.

When I get my pain medication refilled each month, I lay out all thirty-one containers, and put into each slot the proper number of pills I’m allowed to take each day; two pills from one prescription and one from the other.

By calendaring out my medication in this manner I don’t have to worry about: coming up short at the end of the month; going over my prescribed daily allotment of pills; or loosing all of medication.

This method has really helped me. Before I did this, there were times when I ran out of my medication before the month was over. This happened when my pain level was higher that month than the previous one. But since I began using this system, this hasn't been an issue.

The truth is, I don’t always have a need to take all fourteen pills that are prescribed me during a 24hr period. Other times, when a bad crisis has struck me, I have to use a little bit more than what is allotted me. By calendaring out my meds like this, I know when I can take a little more medication without risking coming up short or overdosing.

Breaking Down a Pain Crisis

Having been in a moderately-severe pain crisis the past several days, I decided to write about how I feel while having a crisis. Hopefully this will provide insight to parents and others seeking awareness.

Mentally Foggy
When I’m in a moderate to severe pain crisis, the combination of the pain and the pain medication causes me to feel...foggy to say the least. It’s extremely difficult to think clearly; or type out a coherent sentence without having to correct a dozen spelling and grammatical errors. No joke; it took me almost a minute to type out that last sentence.

It Hurts to Talk
It not the best conversationalist when in pain. While in crisis I’m using all my focus to regulate my breathing and mentally cope with my pain. Also, it’s physically hard to talk when I’m having a severe pain crisis; I become short of breath very easily. In addition to it being physically difficult to speak with others, I have a hard time properly communicating my thoughts. The pain and medicine clouds everything making it difficult express my thoughts. 

It Hurts to Laugh
Like talking, laughing can be very painful when I’m having a moderate to severe pain crisis. The physical exertion of laughing, and the amount of oxygen it uses, just adds hurt to the pain, or salt to the wound as they say.

Need Oxygen
For the past twelve years of my life, I have slept with oxygen at night. Without it, my O2 levels drop to 70% when I sleep. I have an oxygen concentrator. It’s a machine that uses the air in the room to create oxygen equivalent. When last tested, my machine was 98% comparable to pure oxygen. When I’m having a severe enough pain crisis, like right now, I use the oxygen when I’m awake and asleep. Sometimes I will use my concentrator for several days straight. It certainly helps.

Impatient
It’s very difficult to be patient when you’re in pain. In fact, I often don’t realize how impatient I am being with friends or family members when I’m not feeling well. And sometimes I don’t feel well for weeks or months at a time. I imagine being friends with a Sickle Cell patient has it’s own set of challenges; but we are worth it.

Food and Water
It’s hard for me to feel a desire to eat when I’m in a severe pain crisis. Pain can often cause nausea, so I think that has something to do with it. I also have to force myself to drink an appropriate amount of water when in crisis. And of course, this is the time when I most need it.

Don’t Want to Move
Sickle Cell pain isn’t like other kinds of pain; you can’t just work past it. It doesn’t take much to cause a mild pain crisis to transition into a really bad one. Sometimes just moving an arm or standing up makes the pain worse. Often, you can’t and/or don’t want to move in the slightest of ways.

It’s Hard to Read
Reading, writing, and drawing were/are things I can do that put little strain on me. However, there are times when the pain is so bad that it’s impossible to think straight enough to read or write. There have been times when I’ve tried to read a paragraph of something, and it’s taken ten minutes to get through it and understand it. Or times when I’ve tried to write something and I just can’t get it out. Pain alone will do that do you. Pain medication alone will do that to you. When you combine severe pain with increased and potent pain medication...an Einstein you do not become.

Physically Tiring
It’s mentally and physically tiring being in constant pain. It zaps you’re mental and physical strength. Sometimes, the act of lifting a glass of water is difficult and momentarily enhances your pain. As a result, getting up and doing anything is extremely taxing.

Run a Fever
It’s not uncommon for me to run a low grade fever while in crisis. As I mentioned in my “About Me” section, I came to my family straight from the hospital as a foster child. My mother had borne three children of her own before fostering and adopting. As an infant, before I was diagnosed with Sickle Cell Anemia SS, my mother suspected something was not right. Often I would cry as if in pain and run a low grade fever. That symptom of having a fever while in crisis has continued throughout my life.

Spiritually Numb
For me, maintaining my spirituality and feeling God’s presence is the number one most important thing in my life. Sometimes the combined effects of the pain and medication causes me to feel cut off from the spirituality I’m use to feeling. It’s not that I’ve done anything to cause that feeling; it’s just a byproduct of the pain crisis.

Stay Warm
For all Sickle Cell patients, this is always of great importance. It doesn’t take too much time in a cold room or being in the cold outdoors before a crisis can be triggered. Staying warm is extra important when in crisis. I’m even more sensitive to the cold when I’m having sickle cell related pain. In addition to wearing thermal underwear during the winter months, I have an electric blanket--that I’m using right now in fact--to stay warm.

Don’t Touch Me
Sometimes the pain is so severe that the simple act of being touched is agony. When in crisis, I don’t even like to shower; the impact of the water hitting my skin is quite painful. Being patted on the shoulder, having somebody rub my back, or having my cat lay on my lap (like she’s doing right now) can make my pain soar. When in a severe state of pain, I don’t want to be touched by anybody or anything.

Conclusion
Being married to, family of, or friends with a Sickle Cell patient requires a great amount of patience and understanding. There have been, presently are, and always will be days, weeks, months, or even years when I can do very little physically. I have lived with family who were either unwilling or unable to understand that, and it caused conflict. A great amount of conflict in fact; and that put a physical strain on my body that was not healthy for me.

My objective in sharing these insights with you is not to voice my woes. My purpose is to help family and friends of Sickle Cell patients understand what your loved one may be experiencing. Being informed and having insight will help you be more patient with that special person in your life.

"What Do You Mean by Sickle Cell Pain Crisis?"

Happy New Year to all my readers! I hope 2014 is good to you.

I’ve noticed from conversations with various doctors that the term “pain crisis” means different things to different people. For me, a pain crisis means any kind of Sickle Cell related pain. Sometimes a pain crisis is very faint and mild, other times it’s crippling agony. But some of my doctors think of a pain crisis as something that has caused hospitalization.

In my adulthood, hospitalizations have become more rare than when I was a child and teenager. In the past twenty years, I’ve been admitted less than a dozen times. The first twenty years of my life I was admitted to the hospital over one hundred. June of this year will be three years since my last hospitalization. Pain crises, however, those are very frequent.

People ask what a pain crisis feels like. It’s hard to describe. But the best way I can, is by telling people, “You know when you’ve exercised or used muscles that you haven’t used in a long time, then the next day it hurts to move? The mild to moderate pain crises kind of feel like that. The really bad ones, however, it’s like having a million needles in your back, arms, legs, knees, joints, and all over your skin. It's like they are under your skin; and every time you breath and every time your heart beats, those needles push against your skin and retract.”

Often I compare pain crises to the weather. Sometimes it’s cloudy outside and there’s a light mist of rain. It’s quiet and in the background, but you are aware that it’s present. Then there is the monsoon level of pain crises where the wind is blowing you off your feet; the rain is pouring down so hard you that can’t see a thing; thunder is roaring over head and shaking your house; and lightening is filling the sky. I’ve had the faint dull achy (aka: light mist) kind of pain crisis last as long as a year. I’ve had the monsoon type last many days. You never know.

My point in addressing this has to do with communication. When I see a doctor and they ask when my last pain crisis was, I always ask them “Tell me what you mean by pain crisis.” Usually they mean hospitalization, not Sickle Cell related pain. Proper communication with your doctor’s is of huge importance.