When I was first diagnosed with fibromyalgia back in 2008 Lyrica had (I think) just become the first drug officially approved to treat it. At first I was so happy to see Lyrica commercials on TV, because I saw them as a sign that fibromyalgia was being validated as a real illness (people like my pain doctor notwithstanding). Plus, whenever anyone would ask me what fibro felt like I could say, “You know that commercial for Lyrica that shows the person’s entire body on fire? It feels exactly like that.”
But now that I’ve been taking Lyrica for over 7 years I find myself arguing with the TV every time I see those commercials. Here’s why.
If you take the commercials at face value, they would have you believe that the following is true:
But treating fibromyalgia is not like treating a sinus headache or strep throat, where the parameters of the illness are known and understood, there’s a standard treatment that clears up most cases, and there’s a predictable, linear improvement once the patient starts taking the necessary medication. Clear cause, clear treatment, clear effect.
Fibromyalgia on the other hand is a puzzle where the pieces are not only constantly moving, but also constantly changing size and shape. And speaking for myself and most of the fibro patients I know, there is no one thing that gets rid of all our pain. We’ve all had to develop an entire range of tools to deal with our illness. So that’s the first moving part.
Second, not all the tools work all of the time, or even work the same way from one day to the next. There’s a lot of throwing spaghetti at the wall and seeing what sticks. And what sticks changes from day to day; on really bad days, it can change from hour to hour, or even minute to minute.
Here are some examples of what’s in my toolbox:
-cardio (usually aerobic walking and recumbent bike)
-physical therapy exercises
-stretching/yoga
-meditation/visualization
-heating pad
-ice packs
-warm baths
-my TENS unit
-massage
-chiropractor
-sessions with Lynne
-cognitive behavioral therapy
-EFT (Emotional Freedom Technique, or “tapping”)
-writing
-anti-inflammatories (and constantly having to tweak the doses)
-non-narcotic painkillers (and constantly having to tweak the doses)
-narcotic painkillers (and constantly having to tweak the doses)
-epidurals and nerve ablations for my back
-mental health meds (and constantly having to tweak the doses)
-migraine and nausea meds (and constantly having to tweak the doses)
-my CPAP machine
-insomnia meds
Now, let me show you what it looks like to try and use these tools to manage my pain. Let’s take two hypothetical days, say Monday and Tuesday of the same week, and say that on both days my pain level is an 8.
Here’s the third moving part: even though my pain levels might be the same on subsequent days, I have no way of knowing what each 8 is made up of. It could be the same things. It could be a mixture of old and new reasons. The 8s might even be made up of completely different things. And I have no way of knowing which one is true. So I have no idea which tools are going to work. This is where the spaghetti-throwing begins.
Actually, a better metaphor might be that of building blocks. Because I am starting with tools that I know help me feel more comfortable. So every day I’m trying to build a tower of blocks made up of my pain management tools that equals the height of the tower made up of my pain level for that day.
This is the place where the puzzle pieces not only move, but change shape. So this is also the place where the Lyrica commercials are most misleading. And this is most DEFINITELY the place where opponents of narcotic painkillers get it wrong. BECAUSE NO ONE BLOCK GETS RID OF ALL OF OUR PAIN. So we do not spend our days just popping pain pills and zoning out. We spend our days trying to figure out what combination of blocks will bring us as much relief as possible for that particular day.
So let’s say that on Monday, through a bunch of trial and error, I’m able to find a combination of blocks that equals the amount of pain I’m feeling that day. It might look like this:
Pain-wise, this is great. But because I don’t know exactly what’s causing today’s pain, I don’t know exactly why these particular tools worked in this particular way on this particular day. So I don’t come away from the day with a recipe of pain relief that’s guaranteed to work every single time for every single pain day. I could try using the same blocks on Tuesday and have it look like this:
So then I’m back to trial and error again with, as always, absolutely no guarantee that any of my other pain management blocks will work that day. I might find a few more blocks to add to my pain relief tower. I might find enough to equal the size of that day’s tower of pain. Or I might try every single one of my tools and not have any of them work, which means I just have to find a way to ride out the pain for the rest of the day and then hope I have better luck the next day.
So the next time you see Lyrica on TV, or meet someone who lives with chronic pain and illness, or hear people debating whether or not people like me, who suffer Every. Single. Day. from relentless, agonizing pain should have access to LEGAL narcotic painkillers that help us function and actually have a good quality of life </end rant>, I hope you think of this post. Because managing chronic pain is really, REALLY hard. It is a full-time job that we did NOT sign up for and we work our freaking asses off to do it. With no vacation days or weekends off. No breaks, E-V-E-R. We are on call for this job 24/7/365. (And if you don’t mind, I’d like to ask you to take just a few minutes and imagine if your job was like that. I suspect your brain won’t let you do it.) We are those ducks you see gliding across the pond: holding it together, managing this beast of a burden while also creating a good life on the surface, all the while paddling like a maniac under the water to make it all work.
So maybe the next time you see one of us you might also say something like this: “Wow, that sounds really hard. I’m sorry you have to go through all of this. You’re doing SUCH a good job.”
Because gifts of comments like that? Are some of most powerful, soothing tools we have.
Jenny, every time I read something you’ve written about Fibromyalgia I learn something, and I also think exactly what you said: “Wow, that sounds really hard. I’m sorry you have to go through all of this. You’re doing SUCH a good job.” For realz.
Aw, thanks so much!
You go through this every day, and still you write and still you hold on to that wicked sense of humor that I adore. I am in awe of you, my friend. I’m so sorry that this is your job, your reality. You ARE doing a great job.
Thank you for this Jenny. You have explained Fibromyalgia in a way that I have been never able to. I am going to save this and share whenever I come across someone who just doesn’t understand. Thank you and I hope that you have more good days than bad. From one Cranky girl to another. 🙂
From a fellow duck, thanks for putting my thoughts into words on a page that I can share with those I love. You get it right so many times and its so easy to understand. It’s perfectly written. Keep battling, girlfriend. You are not alone, from one cranky fibro girl to another, we’ll continue to paddle like mad under the surface.
Omg!!! Thank you for speaking to my hate of those commercials!! I have had people compare those to my life as if to say, ‘well the lady in the commercial got better, why haven’t you?!’ Thank you, thank you!
~Nikki
I live with chronic pain and use some of the same tools as you to deal with it, including the maximum dose of lyrica daily. I still have pain every day, and yes- every day is different and management is a real challenge. Thank you for this post, it’s such a good description of the daily battle we face trying to manage our pain.. Jess x
You are truly and inspiration. What you wrote speak truth to what fibro feels like and what a job it is to try and live a “normal” life. At the end of the day I’ve realized that the only ones that know what we go through and how hard it is is us. I’ve stopped trying to explain….. but you do an amazing job. Swim on our duck friend, swim on.
Those commercials used to make me cry in frustration. When I tried lyrica, I had the side effect of having suicidal thoughts and because very anxious and couldn’t sleep. Thank goodness my doctor recognized right away what was happening and immediately took me off it.
I hate them too. Even though I take it twice a day, and it does help. I already had depression and was on meds for that, I too had the horrible suicidal thoughts. But I’m a psych nurse (or was) and knew what was happening. For me the benefits outweigh the side effects because anxiety and insomnia were already a part of my life. I’ve been on it for 2 years still have the SE but less pain. It’s a double edge sword. Less pain/SE or having those thoughts because of the pain. I can manage the se I color a lot. We’re all doing a wonderful job.
I used to be on lyrica be cuz the VA insisted I at least try them before they wud renew my narcotic pain med, all I did was gain Wright which made me more depressed, I’ve done every medical thing I was asked n yet back to lyrica, now that my weight is a problem they finally believed me, I wud love NOT depending on anything other then exercise but u hit it right on the nail, I’m working hard to keep my pain tolerable, Thank you so much for sharing
I have only recently been diagnosed with fibro but have struggled with nerve and muscle pain for several years now. Thank you for the support that you give others by finding the perseverance and determination to minister in such a powerful and far reaching way. I appreciate your efforts to educate us. Good days and gentle hugs.
I hop many people WHO do NOT fibro read this and try and try to understand and have some empathy–Lyrica—-U SUCK!!!!
I can relate. Because of the new CDC guidelines doctor has suspended all narcotics until I change my anti-depressants and stop taking lorazepam for anxiety. Doesn’t feel very compassionate to me.
Dead on, my wife loves this cause it it exactly how she feels and tells the world what she really goes through!
As a fellow fibro warrior I totally agree! You put that into words beautifully. Like everyone else with fibro, or nearly everyone, I too tried lyrica. It didn’t work at all. Not even a little. I think it increased my migraines. Doc and I were just laughing the other day how she’ll ask me if ice tried xyz, I say yes but I don’t remember why it didn’t work. Keep being strong. And thank you!
I am new to your page so this is the first thing I saw. It is possibly the best way of describing Fibro I have ever heard! Thank you so much for helping me feel a sense of normalcy! This is fantastically written! I look forward to seeing more from your page!
Hi Jenny,
Thanks so much for sharing this. So many Fibre-friends will be able to relate to this so very well.
We don’t get overt Lyrica commercials here (S. Aust); rather the drug company has commercials saying “if you have nerve pain, talk to your doctor”. I’ve been on Lyrica for a number of years, plus various other meds. I agree that there is not a linear aspect to treatment of pain, and the effectiveness of pain medication varies widely from day to day.
I claim as a ‘superpower’ that I am constantly doing my best to find ways to survive. My big issue is that of clothing so my superpower is being ‘the woman who lives/gardens in her pyjamas. And I constantly need to adapt in that respect. What I could wear in the same season last year, my skin may not be able to tolerate this year. Even if I find nightdresses or PJs that are soft enough, I may have a day where I cannot tolerate the seams – so I turn the garment inside out. This summer I’ve ended up in my birthday suit when that failed as well. Wearing a bra is like putting on thick barbed wire, particularly since I’ve had shingles twice along the bra line on my back.
As a result if I have to get to an appointment or do my best to do something pleasurable, it takes days for the subsequent feeling of being on fire and torn to shreds to ease off. And I suspect like most of us, it can take many changes of garments to find the least problematic one…and I’ve lost count of how many earrings this earring junkie can no longer wear as they are too heavy for my ears!
I’ve often had to try on a few pairs till my ears feel like they can cope – I keep at it as it’s one way that I still feel like a human being, and express my personality. And don’t get me started on trying to cope with bedcovers and finding something that I can happily use 2 nights in a row. That sums up part of what a day in the life of this ‘duck’ is like…as well as trying to work out which elements of my toolbox might have a chance of helping me get through…just like all us ‘Cranky Fibro Girls’!
They now believe the HSV-1 virus is causing Fibromyalgia. The FDA is fast tracking Phase III Clinical Trials for a drug that will suppress the virus.
http://me-pedia.org/wiki/Fibromyalgia#Trials
If I am correct in what the theory is, the HSV-1 virus (same virus that causes cold sores) is attacking the central nervous system. Once the CNS is under attack a lot of body systems begin to break down. Depending on how hard it is attacking, how the CNS is handling it and genetics is probably playing in to each patients exact symptoms and severity.
Thank you for writing out what I’m feeling right now but even worse so that I just feel like I’m a lab rat to them and they are just throwing meds at me testing them out
It scares me
I just recently been diagnosed and still not fully mentally or emotionally digested this
Thank you for writing out what I’m feeling right now but even worse so that I just feel like I’m a lab rat to them and they are just throwing meds at me testing them out
It scares me
I just recently been diagnosed and still not fully mentally or emotionally digested this
Although I don’t have fibromyalgia, I do (like you) get migraines and see several similarities between how the two are treated. First, it seems that both have their share of “It’s all in your head” skeptics. Second, migraine attacks not only differ from person to person, but can also differ from attack to attack within the same person. Third, the same is true about treatment: not only what helps one migraineur might not help another, but what helps in one migraine attack might not help in another.
Thank you!! It is so hard to explain.
I feel the same way about the commercials!
OMG! This article is awesome! It (finally) hits the nail on the head! Between the constant pain but inconsistent cause it’s like herding cats! For years I have tried to “track” any/everything to come up with a solution or a plan to avoid “tigers!” No can do!!! Thank you for putting words to my madness!
For 16 years I have had fibromyalgia and I was a nurse until I got disability. I kept telling my doctors it’s not just Fibromyalgia I really think it’s Lupus. I finally got to a Rheumatologist that had my blood work done at a state-of-the-art laboratory, not a chain like Quest or Lab Corp. I went in to discuss my results. “YOU HAVE SYSTEMIC LUPUS,chronic liver disease, hypothyroidism. …” and a virus I thought only dogs could get as well as Fibromyalgia, osteoarthritis and on and on. Anyway I read this blog about Lyrica and I agree with you 100+% about everything you said.
Thank you, I hope you are finding some comfort throughout the day.
You are my hero! !
It was on The Mighty site
You are my hero! !
Thank you for this, my husband does the same thing. Except he is so med sensitive he cannot take any of those, one stopped his heart, epidural stopped his breathing, another he was losing his sight, another his memory and another he had no control of his anger. So he argues all the time with the TV. So far only thing that helps is morphine. Even medical marijuana does not help. So I fully understand your arsenal of fibro weapons we have one too. We had too get a massage bed to stop some of his issues and we just got a chair so he does not feel so isolated in the bedroom, expensive yes but very helpful.
P.s. It helped him knowing someone else is doing all the same things he does.
From a fellow fibromyalgia sufferer, great job describing what a typical day looks like. I resent the lyrica commercials because they show the person returning to normal activities! Even after I have my pain to a bearable level I can’t possibly function like I used to. Maybe they should use real fibro patients. Anyway, great job and thank you for validating what we are all going through. You are a true inspiratio
Just wondering if you have tried to cut out inflammatory foods from your eating plan? My skin used to feel like it was on fire and it was itchy. I lived it pain daily. I could barely move. When I cut out 98% of grains, all dairy, and all added sugar and all high fructose foods it was amazing I felt so much better. Just trying to help if you have not tried this yet.
FINALLY..SOMEONE WHO GETS IT..WHO UNDERSTANDS WHAT I FEEL.THE PAIN,THE HOPELESSNESS,THE UNEXPLAINED FEELINGS I HAVE,LYRICA DIDNT HELP ME,JUST MADE ME HUGE…NOW ALL I HEAR IS EXERCISE AND YOGA,NOBODY SEEMS TO UNDERSTAND HOW IMPOSSIBLE THAT CAN BE AT TIMES..MOST TIMES I CAN HARDLY MOVE LET ALONE EXERCISE.IM SURE IT CAN HELP,JUST NOT ABLE TO ,I WONT GIVE UP,ITS NOT IN ME TO,I TAKE NO PAIN PILLS,IBUPROFEN,NEURONTIN,CYMBALTA AND CELEXA AND MEDS TO SLEEP,TO BE SEMI PAINFREE WOULD BE HEAVENLY…THANKS FOR BEING HERE.