Response to commercial Lyrica about how to treat fibromyalgia

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When I was diagnosed with fibromyalgia in 2008, Lyrica had just become the first drug approved by the FDA to treat it. At first I was so happy to see ads on TV Lyrica, because I saw it as a sign that fibromyalgia is being validated as a real illness (people like my pain despite medical). In addition, every time someone asked me what fibro felt he could say: “You know that commercial for Lyrica showing the whole body of the person on fire? It feels exactly like “.

But now I’ve been taking Lyrica more than seven years I find myself arguing with the TV every time I see those ads. This is why.

If you take the trade at face value, they would have you believe that the following is true:

graph representing fibromyalgia pain

But for me, the treatment of fibromyalgia is not like treating a sinus headache or strep throat, where they know and understand the parameters of the disease, there is a standard treatment that cures most cases, and there is a predictable , linear improvement once the patient starts taking the necessary medication. a clear cause, treatment clear, clear effect.

Fibromyalgia for me, however, is a puzzle where the pieces are not only in constant motion, but also constantly changing in size and shape. And what me and most patients fibro I know, there is one thing that gets rid of all our pain. We had to develop a whole range of tools to cope with our disease. So that’s the first moving part.

Second, not all tools work for me all the time, or even work the same way from one day to another. There are a lot of throwing spaghetti on the wall and see what sticks. And what sticks changes from day to day; in very bad days, you can change from hour to hour, or even minute to minute.

Here are some examples of what is in my toolbox:

cardio (walking normally aerobic and recumbent)
physiotherapy exercises
stretching / yoga
meditation / visualization
pad Thermal
ice bags
hot baths
my TENS unit
cognitive behavioral therapy
Emotional Freedom Technique (EFT), or “tapping”
anti – inflammatory drugs (and constantly having to adjust doses)
non – narcotic (analgesics and constantly having to adjust doses)
narcotics (pain killers and constantly having to adjust doses)
epidural and nerve ablations for back
medicines for mental health (and constantly having to adjust doses )
migraine and nausea medication (and constantly having to adjust doses)
my CPAP machine
medications for insomnia
Now, let me show you what seems to try to use these tools to manage my pain. Let’s take two hypothetical day, say Monday and Tuesday of the same week, and say that in the two days my pain level is eight.

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Here is the third mobile part: Even though my pain levels may be the same in the days, I have no way of knowing what each “eight” consists of. It could be the same things. It could be a mix of old and new reasons. The eights could even be formed by completely different things. And I have no way of knowing what the real. So I have no idea what tools will work. This is where the spaghetti-launch begins.

Actually, a better metaphor might be the building blocks, and I’m starting with tools I know to help me feel more comfortable. So every day I’m trying to build a tower of blocks made of my pain management tools that is equal to the height of the tower made up my pain level for that day.

This is where the puzzle pieces not only move, but change shape. So this is also where the commercial Lyrica are misleading. And this is definitely the place where opponents of narcotic analgesics are wrong. Because no one block gets rid of all my pain. So do not spend my days just popping pain pills and zoning. I spend my days trying to figure out what combination of blocks will bring much relief as possible for that particular day.

So let’s say that on Monday, through a lot of trial and error, I am able to find a combination block is equal to the amount of pain I’m feeling that day. It could look like this:

bar graph showing fibromyalgia treatments

Pain-wise, this is very good. But because we do not know exactly what is causing the pain today, I do not know exactly why these particular tools worked in this particular way on this particular day. So I do not come away from the day with a prescription for pain relief that is guaranteed to work every hour of every day the individual pain. I could try to use the same blocks on Tuesday and have it look like this:

bar graph drawn by hand on the treatment of fibromyalgia

So I returned to trial and error again, as always, absolutely no guarantee that any of my other blocks pain work that day. I could find a few blocks to add to my tower pain relief.I could find enough to match the size of the tower pain of that day. Or you could try each and every one of my tools and has none of them work, meaning you only have to find a way to cope with the pain for the rest of the day and then hope for better luck the next day.

So next time you see on television Lyrica, or know someone living with chronic pain and disease, or hear people debating whether people like me who suffer all. single. day.relentless, agonizing pain and must have access to legal narcotic analgesics that help us function and actually have a good quality of life </ end rant> I hope you think of this post. Because the management of chronic pain is very, very difficult. It is a full time job that did not register in which we work and damn ass out to do, no vacation days or weekends off. No, eveR breaks. We 24/7/365 service for this job. (And if you do not mind, I’d ask you to take just a few minutes and imagine if your job was so suspect that your brain will not allow you to..) We are those ducks are gliding across the lagoon: holding it together, management of this beast of burden while creating a good life on the surface, while all the paddling like crazy under the water to make it all work.

So maybe next time you see one of us also could say something like: “Wow, that sounds really hard. I feel I have to go through all this. You’re doing a good job. “

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