When I was formally diagnosed in 2007, my own version of an FDA-approved-medication trivia game began. It was a mash up of “drug tic-tac-toe” & “side effect roulette”. If my years of experimentation can help one person reading this, it was all worth it! This is my experience, but is in no way a manual. My hope is that it can maybe give you, or someone you love, an idea of what to expect with each Rx.
At the age of 15, I started having what I now know where symptoms of Fibromyalgia. Although I went for many years without a formal diagnosis, the pain was anything but informal. Many of my doctors along the way attempted to give me relief from the pain way by way of narcotic pain killers. What is extremely important to know as a Fibro, or family member/supporter of a Fibro, is that traditional pain killers don’t usually work for us. They just don’t. Narcotic medications such as Vicodin, Oxycontin, etc. don’t deal with the pain that our bodies magnify and misconstrue. At the core of this illness is an internal confusion. Our nerves magnify pain that may be minimal, as well as often misread from where it is coming. Narcotic pain killers tend to knock us out and make us feel what I describe as “blurry”. All this while not necessarily toning down the pain. So, in the words of the D.A.R.E campaign, my suggestion is to “Just say no!”
*Alert! VERY Important piece of advice!*
Before you start on this journey, or if you are already on it, hit pause and have a sit down with your doctor. Ask for an appointment in their office, not in an exam room. It seems like a small technicality, but it sets the stage for the conversation, while removing the vulnerability of being half naked in an open-backed gown.
At this point let your physician know that you want to start the trial and error process of figuring out what medications will help you to have the best quality of life. I was lucky enough to have a ROCK STAR NEUROLOGIST who had initiated this conversation with me. He explained, in no uncertain terms, that it would be a long road ahead, but that we would do this together as a team.
Along with doctors, I’ve changed my medication regimen too many times to count over the years. At one point I was on ALL of these at one time and my side-effects had side effects!:
Slowly, one at a time, and under a doctor’s supervision, I tapered myself off of most of them. Personally, I can say that I am all the better for it. However, one of the tricky aspects of this stupid illness is that there is no one medication list, dosage, or regimen that acts as a standard treatment for everyone. It presents itself so differently in each one of us. It also depends where you live, how the weather effects your pain, your age and weight, etc. (For example, the low pressure systems in Southern California have increased my pain significantly, compared to when I was living in Southern Florida.) Also, this is also not a complete list of the medications I’ve taken over the years. If there is one in specific you’d like to know my experience with, go ahead and ask me in the comments or private message me.
Let me also say that I don’t believe that living with Fibromyalgia WITHOUT ANY medications is realistic, nor necessary. So don’t feel guilty that you take medications. I’ve seen so many blogs, web sites, and “health supplement companies” say that someone was “cured of Fibromyalgia” with a juice cleanse, (or some other nonsense), so buy now for $99.99! Humph! Although healthy eating is of the utmost importance to us Fibros, just as it is to non-Fibros, cutting out all sugar for example, isn’t going to cure anyone of this illness. Anyone who claims that it (or anything similar) will, is a…well, a charlatan. Pure and simple. There are no legitimate medical studies to prove that diet can eliminate your symptoms or remove the illness all together.
So with that in mind, let me walk you through my experience with both the medications that are specifically FDA approved for Fibromyalgia, and those that aren’t, but are generally thought to be useful to us:
Let me tell you, this is some serious stuff! It can REALLY help with the pain, however after being on it for about 3 1/2 years, it wasn’t worth the side effects. The nausea the manufacturing pharmaceutical company describes in the list of side effects isn’t any ordinary nausea. It is more of a mouth watering, dizzying, fatiguing, turn of the stomach type of nausea. It felt as though I’d drank a half gallon of carbonated water, then immediately gone outside and jumped on a trampoline.
They say you shouldn’t drink alcohol while taking it, and let me tell you, that is no joke! A measly 2oz of wine would make me feel so sick, as if I’d drunk the whole bottle. Within an hour or so I’d then start to feel a “hangover”, including the dehydration, exhaustion, and headache.
Although drinking is not on the top of the list of things I worried about having to give up, it was still disappointing. But the truth is that the daily nausea that came with each dose no matter how much I ate ahead of time, was disabling. I’d have to make plans around taking each dose, carefully planning to not be around friends or family when the serious queasiness kicked in. It was truly an imposition on my day to day living and socializing. It had to go.
I’m sure you’ve seen the numerous commercials for this medication, with the artsy ladies who can once again bake, paint, and do whatever else people living in a perfect world do for hobbies. (Notice how they never talk about how Lyrica can help you vacuum the house? Not inspiring enough, I guess.) It was originally used, and I believe still is, as an anti-seizure drug for people with varying degrees of epilepsy. They found that it worked for neurological pain, which is essentially what we Fibros are lucky enough to have! (Sarcasm.)
I still take Lyrica once a day. I started off, back in 2008, taking 100 mgs twice a day, but found that the morning dose would make me even more foggy during the day than usual. It was the drowsiness side effect that is one of it’s most common. After speaking with my Doc about it, we decided to try to cut out that morning dose because I could mentally manage the daytime pain. But at night I continue to take 100mgs, using the drowsiness to my advantage, helping me to fall asleep.
99% of the time I stick to the 100mgs, once day at night time. However, if I am having a particularly bad pain day, specifically in my legs, I’ll add in a 50mg capsule. Never more than a total of 150mgs. I don’t do that often because the next day, I often still feel drugged from it.
Being that I was in my early 20’s at the time I began taking Lyrica, the weight gain so often reported by other patients was of great concern to me. My doc assured me that if I stayed at a low dose such as 100-250 mgs a day, that I would avoid that pleasent side effect. So far, in the last 7 years or so of taking it, I’ve had no weight gain… well not from Lyrica!
The good effects of this drug don’t last in your system terribly long, but before taking it my leg pain was unbearable. When I say leg pain, imagine how your legs feel when they fall asleep. Now, imagine when you first start to move your leg because you know its the only way to bring the feeling back. That “pins and needles” feeling that makes the hair on the back of your neck stand up… THAT is what my leg pain feels like. That’s why I decided to stay on the low dosage of this medication. I’d never sleep if it wasn’t for the help from this drug.
When I was having crazy migraines, a headache specialist tried to increase my dosage of Lyrica because it has been known to help Fibros with Migraines. Instead, I was a walking zombie. I was so tired, even worse than the average fatigue with this illness. I decided I needed to go a different route to dealing with the debilitating Migraines.
So, the headache specialist decided to put me on Zomig for the migraines. Although it truly did help when I couldn’t fight the migraines, its a dangerous drug. You can’t take it more than twice per week. For me, that was scary. Really scary.
When we moved to Florida, the headaches began to subside. They were at their worst when we were living in San Francisco, so I think that the weather and constant changes in the barometric pressure were to blame for them. When we have low pressure storms herein So. Cal, I am still prone to getting them. So knowing that, I just try to lay off the computer, stretch a whole lot more, and pay attention to my head. I haven’t taken it in almost three years now.
One of the biggest issues with Fibromyalgia is our fatigue due to lack of real restful sleep. Back in 2007 I was prescribed Lunesta. In my mind, this is also a dangerous drug. Its highly addictive, super expensive, and tastes like rotten food. YOU HAVE NO IDEA HOW HORRIBLE IT TASTES! The problem that finally made me decide to stop taking it was that it stays in your system for much longer than 12 hours. Yes, I’d sleep at night, but I’d also sleep in the morning, the early afternoon, and be a zombie the rest of the day until I had to take it again. I began to fear that my body didn’t know how to sleep without it. Then I realized, my body wasn’t sleeping WITH it. It took me a while to taper off of it, and I was up for days once Iw as fully off of it, but its gone!
Now, I use LIQUID melatonin. It comes with a little dropper, and you’d laugh at the amount I take. Its smaller than a kids dose. But with Fibromyalgia comes chemical sensitivity. So, its more than enough. It can be hard to wake up in the morning, but once I’m up, I don’t feel groggy like I did with Lunesta, Nyquil, or a night without sleep.
Inevitably, there are going to be days, or sometimes weeks, that epitomize this illness. Times when the pain is so unbearable you wish you could just cut it out like an infection. Sitting still can be impossible, all while moving is just as painful. Being touched can make your skin feel like its covered in a layer of fiber-glass, while your muscles beg to be massaged. Its a true juxtaposition.
So on those REALLY bad days, or when I go for a couple of weeks in a flare that won’t subside, I take 1/2 of a 250mg Soma, which is 125mgs. Soma is a muscle relaxer, so it will make me loopy and quite drowsy for a couple of days. I don’t like to feel “high” or “drunk”, so I only take it when I can’t handle the pain anymore. I try not to take it more often than MAYBE 2x a month because it is again, highly addictive. I have been fortunate enough to not have a substance abuse problem with all of these highly addictive medications, mostly because you have to enjoy the way they make you feel in order to take them more often than I do. However, I believe in never saying never, and I always proceed with immense caution.
So, that brings me to Tramadol, my saving grace. This is the generic for the more commonly known, Ultram. This drug has been around a long time and is a NON-Narcotic pain medication. I take it serveral times a day, and I can’t tell you how much it helps. Again, it isn’t long lasting, but its one of the few things that help like clockwork. Just don’t take it too close to bed time because it gives you a bit of mental energy and you won’t go to sleep. Don’t get me wrong, I still feel the pain, but it is so much more manageable.