Teens in Chronic Pain

My Mom’s birthday is tomorrow and I bought the perfect card to describe my relationship with my mother. As a teenager and now college student dealing with chronic pain and 10 surgeries, she has been my support system through all the bad and my cheerleader during the good times. For that, I will always be grateful.

Moms Make Everything Better:

You’ve had a bad day or a terrible night,

And you don’t have the strength to stand up and fight.

You want to give up. Life is awful, all right.

But who really cares? It’s your mom.

Your heart just got broken. You’re feeling alone,

With more angst and sadness than you’ve ever known,

So you take a deep breath and pick up the phone.

Who’s always there? It’s your mom.

You’re so overwhelmed. There’s just too much to do.

It feels like the whole world is leaning on you.

You can’t even imagine how you’ll ever get through.

Who’s by your side? It’s your mom.

You’re upset and confused - big decisions to make.

Which path to pursue? Which chances to take?

Would it be a smart move or an awful mistake?

Who’ll be your guide? It’s your mom.

Yes, all through your life, whatever you need

To make you feel better or help you succeed…

Some advice or a hug or a kind, thoughtful deed,

It’s always one hundred percent guaranteed:

Who loves you the most? It’s your mom.

While recovering from my tenth surgery this past week, I finished reading a great book entitled Our Daily Meds: How the Pharmaceutical Companies Transformed Themselves into Slick Marketing Machines and Hooked the Nation on Prescription Drugs. As someone who relies on pain medication on a daily basis and a college student planning on going into public relations, I thought that this would be an interesting read. While I thought it started off a bit slow, the book quickly picked up and the research that this author, who used to cover the pharmaceutical industry for the New York Times, was astounding. The biggest thing I took away from this book was to make sure I independently researched the medications I had been prescribed.

According to the book, a lot of medications are only 40-50% effective. The new drugs tend to be old, much cheaper drugs with a slight alteration that with tons of marketing can become a billion+ dollar drug for the company. As I’ve mentioned in previous posts, I take Vicodin (lowest dosage) every day to deal with my chronic knee pain. Before I had surgery last week, my pain intensity has significantly increased due to an injury and my Vicodin was no longer helping enough. I saw my pain specialist, who I see about once a month, and he upped my Vicodin dosage, gave me a prescription for this anti-inflammatory cream, and a prescription for Cymbalta. He told me that Cymbalta was an anti-depressant drug that had been proven to help with pain including fibromyalga. He gave me free samples of Cymbalta and the cream.

I had just started reading this book and the author frequently used anti-depressant medications as examples of medications that are really pushed onto people. I’m not saying that it’s not important and effective or even discounting its helpfulness to other people. However, I decided to look up Cymbalta on Google before I started taking it. Boy, was I glad I did. The drug turned out to be an anti-depressant for people with major bouts of depression (I was definitely down about all the pain, but not depressed) and also helped with pain on the side. I then looked at the side effects on websites that allowed patients using that drug to leave their feedback. On one site, Cymbalta had 1400+ reviews and a majority of them were negative in nature. Another site had close to 1000 negative responses. To put this in perspective, the Vicodin page had 26 and the few negative ones were about constipation. These patients complained that (1) Cymbalta wasn’t incredibly effective, (2) either made them insomniacs or made them drowsy all the time, (3) made some taking it only for pain and not depression contemplate suicide, and (4) had intense withdrawal symptoms even after being on the drug for only a week. I didn’t want to risk messing with my mind when I’m just going through a rough spot with my pain so I opted not to take it.

Now I’m not completely blaming my doctor for prescribing me the medication. I know for a fact that pharmaceutical sales representatives come by his office and he certainly has his fair share of medication pens, paper, brochures, etc. I believe that a representative told him that the drug could help with pain and highlighted the key positive points. He’s incredibly busy. Packed with patients, depositions all the time, fighting insurance companies, etc. I think sales representatives take advantage of that fact. So I think it’s smart for us, as chronic pain patients, to double check our doctor’s prescription in case something like this comes up. We should be informed as to what exactly we’re putting in our body and if it’s worth the risk.

I came across this letter to people without chronic pain at this blog and wanted to post it here:

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Thats what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

- Author Unknown