Out Of The Ashes

One of the first PILD pieces I ever wrote was about drug addiction. It was an incredibly poignant piece of prose, but the basic theme was this: Anyone can become addicted to prescription pain medicine. This is a simple fact.

This is a new blog, and since many of the readers may not know me from “…..And The Moon Sees All”, let me clarify why I am writing about this particular subject.

In 2003, I believe, after years of bizarre pain and recurring injuries that I could not explain, a doctor sat me down and said “All of your tests have come back negative. Your blood work is good, everything’s negative. Your MRI is clear. Your x-rays only show the spinal issues that the MRI showed 4 years ago. Have you ever heard of Fibromyalgia?” I had only heard about it in passing, I did not know a lot about it. Not much was known about it on a whole, but in all honesty, I was a little too distracted, because knowing that what I had was not Lupus was much more prevalent in my mind.

My world changed that afternoon, and has continued to change every day since then. I finally had answers for what was plaguing me. Unfortunately, I did not know just how much the disease itself would plague my life, what it would take away, the time it would rob me of, and I still have no idea what it will do to me in the future.

When all of the pain began, I was put on several different types of pain medication and a muscle relaxer as the standard operating procedure. Coming from a background where I had worked for a professional athlete who’d had his demons with pain medication, I was not a fan of what this entailed. I was not going to become a person that lived her life based on her next dose, nor was I going to become this person that abused what she was given. To this day, I am still one of the most responsible users of medication that I know.

As the years have come and gone, I’ve pretty much adhered to a 2-3 times a day policy, even on my worst days. Technically I am allowed 8-10 pills per day. Many years ago, when the medication simply wasn’t strong enough because I’d been on it for so long, I was taking the maximum allowed dose every single day. Eventually, it all stopped working and I lost my patience. I then weaned myself off of it and now, on the absolute worst days, I will only take something at night. During the day I will take Tylenol or Aleve, but at night, I allow myself the prescription. On days when I cannot move a muscle or get out of bed, I might allow myself a morning pill, but I’ll definitely chastise myself over it.

Millions of people suffer from Fibromyalgia and Chronic Pain. There are a laundry list of side effects from each and the truth is, to this day, I still don’t know for sure if I have one or the other, or a combination thereof. My doctors have been lax. They have found it easier to refill prescriptions and try to refer me elsewhere because what I am going through is truly out of their wheelhouse.

I took very high doses of Cymbalta for 8 years and it did give me aspects of my life back. I almost felt like a regular person again. However, once it stopped working, I could no longer go back on it. I have tried multiple times at the 20 mg level (the lowest dose possible) and even that is too high a dose for my body now. I have tried Lyrica and while I know it helps some people, for me personally, I think it is a seriously awful drug. It was like being 100% aware in a coma. In turn, I’m not touching Savella with a ten foot pole.

My first referral was to a pain management center where they spend the entire day performing epidurals and nerve blocks. Strictly speaking, unless you are done having kids (which I am NOT, and obviously this only applies to women), you shouldn’t be using this as a form of pain relief unless you’ve chosen not to have kids. The risk of an epidural wearing off for me in the future in the middle of childbirth is a risk I am not willing to take. I spoke with my doctor about it and he was mortified that this was the only option being made available to me. He agreed with my perspective and said that if I went through with it, I would absolutely have one fail during childbirth. At that point, I was left without options.

I have tried experimental medications, some of which have only recently been approved for the treatment of Chronic Pain. One in particular robbed me of a week of my life, I will never take it again. I have done several courses of Eastern Medicine and while some of it worked well, others were so temporary that I don’t feel like two hours of pain relief is worth spending a week in bed. Herbs are not addictive, but you do continue to seek pain relief from them if they work. It becomes a different type of pattern, albeit a natural one that isn’t habit-forming.

My next step in this lengthy, exhausting process is a Fibromyalgia specialist. Yes, they do exist, but they’re hard to find and it’s not easy to get on a waiting list to see one. Many of them do not take any form of insurance, except Medicare, so they definitely don’t make it easy for you to seek out pain relief and the proper treatment method for your body. However, I am determined to get in to see the one in my area, even if that means a 6+ month wait, or longer.

I did nothing to cause the Fibromyalgia from creeping into my body and systematically trying to take over. There is a widespread belief that it is caused by physical and/or emotional trauma in your life, and the on-set is different for everyone. It is widely speculated that mine was caused due to a gymnastics injury that lingers to this day, but the truth is, my doctor was simply going over my history and looking for a particular physically traumatic event to try to help me find some closure as to how it may have happened. We will never truly know with any certainty.

Some people have Fibromyalgia or Chronic Pain so mildly, that their flare-ups are just a few days per month. Others are experiencing pain so severe that they cannot function or take care of themselves, their lives change in the blink of an eye. None of us WANT to end up in wheelchairs, but I keep hearing about it and that is incredibly scary to me.

This disease is like many, it is a predator. It targets anyone, it does not discriminate. It can, and it does, happen to anyone.

So, the next time someone tells you they have Fibromyalgia, do not tell them they “don’t look sick”. I can’t tell you how often I get told that I “look great”. Yes, and it takes me 5 hours to look that way.

Don’t judge someone with any form of Chronic Pain or Fibromyalgia. Do some research and do what you can to lighten their load, even if it means cleaning a room for them when you can, taking them to doctors appointments when you are able, or cooking for them so that they don’t have to struggle in their attempts to put a meal together for themselves and/or their family. Be a supportive ear, and don’t take it personally when they inevitably have to cancel plans with you constantly because the pain is too much. They aren’t doing it on purpose, they don’t hate or dislike you, but they DO hate their pain. Do what you can to put their mind at ease. Be kind, be courteous, and above all, treat them the way you’d want to be treated if you found yourself in the same position tomorrow. If they weren’t able to go with you to see that movie, bring it to them when it comes out on DVD and provide them with a fun movie night at home. Make them comfortable. Show them that you care. Take their pain seriously and they will respect you for that. If you walk away from them thinking that they’re faking it or that it’s “all in their head”, pause for a second and factor in the simplicity of karma.