Tips for Surviving the First Week on Cymbalta

FullSizeRenderDISCLAIMER: I’m not a doctor. Listen to your freaking doctor.

As I mentioned in an earlier post, I suffered some pretty wicked side effects my first week on Cymbalta:

  • sweats
  • migraines
  • dehydration
  • sleeplessness
  • dizziness
  • nausea

If I hadn’t known that these experiences were normal for people starting on Cymbalta, I might I have stopped taking it after the first day. They are not mild side effects, and it’s disconcerting to experience a drug changing your brain chemistry. (Cymbalta, generic duloxetine, is a selective serotonin and norepinephrine reuptake inhibitor (SSNRI)).

But my doctor warned me the first week could be rough, I read the pamphlet from the pharmacy, and I researched the experiences others had by browsing forums online before I started. Without these assurances that the body would adjust, I might have suffered severe anxiety.

My instructions were to start with 30mg for the first week, then bump up to 60mg. On day seven, I had adjusted pretty well. However, I was concerned that bumping up to 60mg right before traveling might be a bad idea. So I didn’t up my dosage until day 10. I didn’t have any problems at all jumping from 30mg to 60mg. It really was just that first week that was troublesome for me.

Knowing what I do now, here are are a few things I’d recommend for people with fibromyalgia preparing for their first week on Cymbalta:

  • Ginger tea: My favorite is ginger lemon tea. I add about a tablespoon of honey and a little milk. The ginger eases nausea, the milk soothes my heartburn, the steamy hot water eases my headaches, and the honey makes it taste soooo good.

  • Memory foam pillow: Actually, if you have fibromyalgia and are in the market for a mattress, I recommend trying out a memory foam mattress. It’s like sleeping on a soothing cloud for me. There are no pressure points and I notice a huge reduction in leg and hip pain for me when I wake up every morning. If a mattress isn’t in your budget, try out a 3″ memory foam topper or pillow. The pillow has eased some of my neck, shoulder, and jaw pain. (Sadly, however, I still clench my teeth at night, and my jaw cracks and my ears pop when I talk or eat.)

  • Water, water, water: Cymbalta was very dehydrating, and that exacerbated headaches and migraines for me. Drinking lots of water helped.

  • Excedrin migraine: Nothing in the world works for me like this stuff. It’s got acetaminophen, aspirin, and caffeine in it, which means it might not be the best option for everyone. Dosage instruction say to take two tablets and not to exceed two tablets in 24 hours. I found it worked best for me to take one tablet every 12 hours when symptoms were bad. It worked quickly for me, and the relief was almost euphoric.

  • Oyster crackers: If the Cymbalta makes you so nauseated you don’t want to take it with a meal, just eat a tiny handful of these babies.

  • Sick days: If you’re employed and you can swing it, you might want to anticipate taking time off from work while you adjust. In seven days, I called in sick once. I was just too dizzy to drive and too clumsy to walk the block or so to my job.

  • On-call help: My husband was around, and that was such a huge blessing. It’s not like I needed 24-hour care, but I sure didn’t feel like running to the grocery store for anything and he drove me to and from work a couple of times. Plus I felt better knowing that if I were going to have a serious reaction, he could handle the logistics of getting me to a doctor or whatever.

  • Sleep with Me Podcast: I mentioned this podcast on the blog once before, and it still works great for me. In fact, since November 1, 2014 I’ve listened to it every night with one exception. And on that night I had taken ZzzQuil and fallen asleep at something like 7:30 pm.

Have you taken Cymbalta for fibromyalgia? What was it like?

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How to Talk about Fibromyalgia Pain

FibroTrollIn my last entry, I added my personal commentary to a Facebook post from someone I’ve endearingly come to call FibroTroll™. Something about the anti-fibromyalgia rant struck a chord with me. As I read it the first time I couldn’t help but think to myself, this wasn’t written by someone who actually had fibro symptoms; this was written by a close friend or family member of someone with fibromyalgia.

Quoting FibroTroll™:

Fibromyalgia is latin for seeking pain pills. If you’re not, you’re misdiagnosed. There is no test for it and it does not cause organ failure or death. The symptoms are vague; tired and achy. My doctor once told me I had it, and I was like no, that is not a real disease, ma’am.. and my doctor admitted it has always been a catch all for undiagnosables. If there’s one thing that singes my suction cups it’s people whining about their fibro-frogging-myalgia. Seriously, if you are tired and hurty, there is another underlying reason and you need to find what that is before it’s too late. What do you want others to do for fibromyalgia awareness? Play you a violin? Even the guy who coined the name later recanted.

The you-can’t-die-from-it-so-suck-it-up tone to me is a dead giveaway that the writer is annoyed that someone he or she knows can’t (or in his mind, won’t) will themselves back to normal health. I can almost hear the internal muttering of the author. “So what, if you hurt? When I hurt, I push through it. I don’t use pain as an excuse.” Or, “Of course you can’t do anything. Now you’re addicted to pain pills. If you got off them, maybe you could function again.”

Then, so as not to seem like a total asshole, I suppose, FibroTroll™ backs down slightly. It’s like he’s saying “I don’t truly believe there’s anything physically wrong with you, but if by some random chance there is? Well, it must have a socially and medically uncontroversial name. Cancer. Diabetes. ALS. Multiple Sclerosis. Diaper rash.  Anything but fibromyalgia.”

I think a huge part of the disconnect between patient and spouse, patient and doctor, patient and best friend, or patient and adult child is that many of us diagnosed with fibromyalgia aren’t really good at talking about pain. Some of that is caused by our symptoms. We spend all day, every day trying to forget about our pain. Who among us really wants to try and explain it ONE. MORE. TIME. to someone who’s just going to shrug it off anyway?

Am I right?

Problem is, attitudes like that can actually produce more people like FibroTroll™.

Pain Means Different Things to Different People

The word “pain” has been watered down to the point it’s almost a cliche in and of itself. Consider these literal and idiomatic uses:

  • Pain reliever
  • Back pain
  • Pain in the neck
  • Great pains were taken
  • On pain of death
  • Growing pains
  • Share your pain
  • No pain, no gain

People hear you say that you’re in pain, and all they can do is draw from their own experience to interpret what you mean. And God help you if the person you’re talking to believes pain is nothing more than that 12 hours of muscle stiffness and soreness you feel after a workout. And that it feels good to boot! Or what about someone who thinks they can actually share your pain just by hearing you describe it? No matter how much they might want to understand, very few people (if any) will be able to imagine what you’re going through.

That is, unless you change the way you talk about your fibromyalgia pain. It’s easy to say “My neck hurts.” Unfortunately, it won’t mean a whole lot to your audience.

To ease some of that frustration, I think it’s important for those of us diagnosed with fibro to ramp up our pain vocabulary. To speak using words that are less ambiguous. To know our audience. To get the message across in a way that increases our chances of getting help and reduces our chances of being completely misunderstood.

Talking to Your Doctor about Fibromyalgia Pain

Do you know what your doctor knows about pain? Understanding how pain is defined and differentiated in the medical field is your first step to a more accurate diagnosis, which (fingers crossed) will lead to quicker and more effective treatment.

Acute Pain versus Chronic Pain

Acute pain is normal pain and considered “good” by doctors because it warns us that something is wrong. Burn your hand pulling something out of the oven, and not only will you not leave your hand there to burn, but there’s a decent chance that next time you’re cooking something you’ll be more careful. 

Acute pain starts quickly and goes away over time.

Chronic pain is when “the pain itself becomes a disease.” It can last, weeks, months, years, decades. It might come and go, and you might have a few good days. But it has a habit of returning. Chronic pain can cause the nervous system to become hypersensitive. The pain lasts longer and feels more intense than it should.

If you’re seeing a doctor for the first time or going to a new doctor or specialist, be specific about the duration of your pain. Has it been going on for 4 months? 8 years? Estimations are fine, but saying “a long time” is subject to interpretation. In my experience, good doctors will work to get more specific information out of you with follow-up questions anyway. But what happens if you catch your doctor on a day that she’s swamped and in a hurry to see all the patients on her list? What if he forgets to dig deeper or makes an incorrect assumption?

It might also be helpful to classify your pain. I don’t use these words myself when I talk to a doctor, but knowing these classifications for pain helps me describe how pain varies over time or from area to area.

Hyperalgesia: An increased sensitivity to pain, which may be caused by damage to nociceptors or peripheral nerves.

Allodynia: Pain due to a stimulus which does not normally provoke pain.

Paresthesia: A sensation of tingling, tickling, pricking, or burning of a person’s skin with no apparent long-term physical effect.

Before I move on to the part about talking to your loved ones about pain, I want to get up on my soapbox for a minute. I have had the opportunity to hear a lot of people talk about how frustrated they are with their doctors for not knowing what’s wrong with them and not knowing how to fix it. So I want to take a moment to stick up for the profession in general.

Doctors are just human beings like you. Prepare for your visit, learn to be your own advocate, and remember that it has taken hundreds and hundreds and HUNDREDS of years to learn all we know about the human body so far. To assume that doctors should have fibromyalgia completely sussed or have a definitive test for it is a little absurd. (I’m looking at you, FibroTroll™.)

chronic pain barbieTalking to Your Loved Ones about Fibromyalgia Pain

The advice I offer in this section assumes you have a normal, loving relationship with your friend, significant other, child, or whomever. If you’re married to a prick or your daughter’s a hedonistic druggie with anger management problems who doesn’t understand why you can’t pick up her son from daycare because she’s getting her nails done, forget trying to explain yourself. Spend your time talking it out with someone who’s going to be supportive instead. (I mean, duh. Didn’t anyone tell you that stress compounds fibromyalgia symptoms?)

Okay, so. There are three rules to talking to your friends and family about fibromyalgia: be understanding, be descriptive, say something positive.

Be Understanding

Clearly the world doesn’t revolve around people with fibromyalgia. Your first job before you bring it up in conversation is to understand that unless the other person also has fibro, there’s a pretty good chance they won’t have a clue what the fuck you’re talking about. Your job is to be totally okay with that. Don’t expect them to get it, and you won’t be disappointed. Take notice that they’re trying to understand, and you’ll be humbled by how much they care.

If you’re like me, you went from Type-A to groaning every time you have to stand up without any formal warning of what was coming. It’s not your fault, but it’s not anyone else’s either. If you mourn the way you used to be, the people who spent the most time with you might be mourning too.

Be Descriptive

Avoid words like “pain” and “hurt” and “tired” and “exhausted” unless you can back them up with a descriptive analogy that’s somehow meaningful.

Meaningless: I get migraines.

Meaningful: When I have a migraine, my arm aches. It feels like it’s wrapped tightly in a blood pressure cuff  lined with thumbtacks from shoulder to wrist. My vision is distorted. I see squiggly lines whether my eyes are open or closed, and I can see letters but can’t read. It’s normal, but still a little scary. And I feel like someone has sewn up the base of the back of my skull from ear to ear with a single thread and then yanked it tight to pull the the top and bottom skin taught.

 That’s a typical migraine for me, by the way.

Say Something Positive

If you know anything about me, you know that I’m no Pollyanna. But talking with another person requires interpersonal skills. You have to be aware of their feelings too. I mean, you can be all gloom and doom if you want, but I bet you real money the next time you broach the subject they tune out or start to get angry. So count a motherfucking blessing or something during each of your fibro talks, okay? It isn’t that hard.

  • Some days are better than others, and I hope we take advantage of those days.
  • I’m so glad to have you in my life.
  • Jenny and I are starting water therapy next week, and I’m looking forward to it.

My last word of advice is to write a letter or at least write down some notes if you’re trying to share with someone what it’s like to be you. I have a hard time expressing myself through speech on a normal day, because I’m a writer. But it’s even harder to make coherent points and remember everything I want to say due to a number of fibro syptoms and treatment side effects.

Image Credits:
Chronic Pain Barbie as seen on Chic Vegan

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Newsflash: Someone on the Internet Says Fibromyalgia is Fake

I belong to a couple of Facebook groups for people who, like me, have been diagnosed with fibromyalgia. Typically, I just lurk and glance at the conversations that pop up in my News Feed. Mostly I watch people talk about their symptoms, their struggles, their disability denials, their long list of doctors, their even longer list of prescriptions, and thank my lucky stars I’m getting by.

Today, though, one of our group members found this post somewhere else on Facebook, and shared it to the support group’s page. Several were understandably very upset.

fibromyalgia is fake

Personally, I don’t see that there’s much point in being upset by anonymous trolls on the internet. Many people in the support group routinely share how hard it is to get family and friends to see them as anything but lazy pill poppers. So no need to go looking for drama.

Still, I can’t help but comment here on the blog. Not to feed the troll, but to sort out my own thoughts. Both for me, and for anyone who doesn’t know what it’s like to live with chronic pain but thinks it might be edifying to read a more reasoned response than the gems tucked away in Facebook comments. (Fibro sufferers on Facebook mostly resorted to things like wishing FibroTroll™ had fibromylagia or posting a picture of J.C. flipping the bird with the caption “Even Jesus thinks you’re a cunt.”)

So, yeah. People are really touchy about this subject.

Let me just do this line by line…

Fibromyalgia is Latin for “seeking pain pills.”

Cute, but no. The word fibromyalgia is a catchy little word made by combining a few Latin roots: “fibro” (connective tissue fibers), “my” (muscle), “al” (pain), and “gia” (condition of). Some people who have been diagnosed with fibro take pain pills; some don’t.

I occasionally take Tylenol or Exedrin Migraine if the pain disrupts my sleep or prevents me from getting shit done or the migraines make me feel like I’m stroking out. Though I don’t need anything stronger, I don’t judge anyone who does. I get that people who don’t experience pain on a daily basis don’t understand this dependency on dirty pills Nancy Reagan taught us to fear more than the devil himself. And it’s totally acceptable for those people not to understand. I don’t know what it’s like to be someone else either. But there’s no need for anyone to be an asshole about any of it.

If you’re not [seeking pain pills], you’re misdiagnosed.

Fibromyalgia was my diagnosis only after a laundry list of other diagnoses had been explored, including but not limited to: hypothyroidism, MS, CFS, lupus, rheumatoid arthritis, depression, lyme disease, IBS, RLS, sleep apnea, and blah, blah, blah.

I have had hypothyroidism for more than a decade and was concurrently diagnosed with depression and fibromyalgia last fall. I may very well be misdiagnosed—it happens frequently enough with all kinds of syndromes and diseases and disorders—but until my doctor or the larger medical community comes up with better answers, fibromyalgia is all I have to work with.

The symptoms are vague; tired and achy.

Those might be the symptoms FibroTroll™ went to the doctor with, but I had a very specific list of symptoms that I talked to my doctor about. I tend to shorten this list a lot when talking to non-medical professionals for a few reasons: 1.) I don’t want to rattle off the list repeatedly; it gets old 2.) I don’t necessarily want to tell anyone face-to-face that some days I’m so inflexible wiping my ass is a struggle, and 3.) I can read body language and understand social cues.

My doctor admitted it has always been a catch-all for undiagnosables.

And if you think FibroTroll™ is upset that no one has figured this stuff out yet, imagine how doctors and patients with the diagnosis must feel about it! I don’t see anything wrong with the term fibromyalgia. The collection of symptoms related to fibromyalgia are common enough from patient to patient to merit them being grouped together and given a name. This one word makes my life a whole hell of a lot easier to talk about when I see a medical professional.

If there’s one thing that singes my suction cups, it’s people complaining about their fibro-frogging-myalgia.

Seriously, the only people I’ve run into that are offended by my being honest about how I feel are people who want to project their own selfishness back at me. Generally, these are people who don’t want you to ask them for help because they have more self-gratifying things to do and they don’t want to feel guilty about doing them. These people, once identified, are quickly relieved of the chore of being part of my life.

Seriously, if you are tired and hurty, there is another underlying reason and you need to find out what it is before it’s too late.

I don’t know why I didn’t think of this! I’m calling my doctor right now to schedule an appoi…oh wait. I know! I’m calling up my doctor first thing to ask him if he’ll order tests for all the things that fibromyalgia doesn’t mimic. Seems reasonable.

What do you want others to do for fibromyalgia awareness? Play you a violin?

Actually, no. Just understand that when people say they have fibromyalgia, they feel like shit. All you have to do after that is try not to be an asshole about it. You can even continue believing that people with fibromyalgia are making it all up if you want to—just keep it to yourself or share it with someone that won’t be hurt by it.

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Fibro Update

Nothing big to report lately. I had a couple of follow-up appointments with the rheumatologist who helps me manage the fibromyalgia and depression, and all seems to be on the right path. My brain is still great. In fact, if I pair a little caffeine with my Cymbalta I feel emotionally high. That is, until that moment in Love Actually where Emma Thompson’s character opens her Joni Mitchell CD and excuses herself to her bedroom.

Of course, the flip side of the caffeine high is that it seems to be tearing up my stomach. So I’ve been trying to strike a balance. If I go totally off the caffeine, the headaches and migraines return. If I have too much of it, it feels like someone’s inside my stomach scraping the walls with a dull razor.

But back to my most recent doctor’s appointment. I put on four pounds in three weeks. I’m not happy with this, but I have decided that my weight takes a backseat to making sure I don’t stress my body into flare ups. Plus it’s Christmas. Plus–and I don’t know if this is the medicine, the ailment, or just a lack of willpower on my part–but I always feel hungry these days. Basically, I’m just giving myself permission to be obese (I am, in the clinical sense, obese–I’m not body shaming myself) for a while.

The only complaint I had for the doctor was that I still felt exhausted and weak all the time, despite my sleep schedule being much improved. So I got the there’s-no-pill-for-exercise talk followed by the don’t-exercise-outside-in-cold-weather talk. I just nodded. Fibromyalgia and depression can both be improved with aerobic exercise. The trick, or so I’m told, is to stress the body ever so slightly. If it knows you’ve had a workout, you’re pretty much screwed.

Because our apartment is maybe seven steps long by five steps wide once it’s filled with furniture, I decided I needed this to have any hope of getting indoor exercise right now. With all the time I spend at my laptop freelancing, I’m very hopeful. Once upon a time, I spent a fair amount of time on a treadmill, but then I had to sell it when we moved. So I think I’m disciplined enough to make this worth the expense, particularly as I add on a couple of freelance projects for 2015.


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