In 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.
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™.)
Talking 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.
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.
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.
Chronic Pain Barbie as seen on Chic Vegan