More On Pain

So, I’ve accepted that pain is going to be a part of my daily life.  The question remains: how to cope?

I can’t take ibuprofen anymore; it causes tinnitus. I have a consult pending with an ENT to see if there’s an organic cause, but I know for sure that taking ibuprofen makes it worse, so it is now reserved for severe headache, balancing the benefit against the consequences.

I had been taking Vicodin, about one a day.  I gradually, without even thinking about it much tapered myself off; it just doesn’t seem to help a whole lot.   I now take one a week or so, usually on the days where I have to work, and the pain is severe.

I saw my doctor Tuesday, after work.  I was in pretty bad pain when I saw her, about an 8.  Verge of tears kind of pain.  I hadn’t taken a Vicodin for work that day, because I wanted her to see me in pain.  I explained why I stopped taking the Effexor, and said I was open to trying a different SSRI, so she prescribed Zoloft.  Told her about not being able to take ibuprofen for pain, and she said we could try gabapentin (Neurotonin.)  Gave me prescriptions for both, told me to start them about a week apart.

After doing some internet research, I decided to start the gabapentin first.  It’s an anti-seizure medication that often helps with neuropathic pain.  I read many reviews of people with FM who have used it successfully to reduce their pain.  So I took my first dose last night.

The main side effects are drowsiness and dizziness.  I have never really had a lot of side effects from medication, so I was hoping I wouldn’t with this.  It’s only been twelve hours from taking it, so my experience is limited, but it did make me pass out on the couch, which after several nights of insomnia was a good thing.  Less of a good thing was being unable to move to the bed without help.  Even this morning, I’m dizzy, in a weird way.  I’ve been having bouts of dizziness, vertigo, which I absolutely hate, worse than pain.  With pain, I can still function, though it hurts.  With the vertigo, I’m down for the count; can’t do anything.  Can’t drive, can barely walk to the bathroom.  It’s totally debilitating.  Luckily, it’s only happened a few times.  With the gabapentin, this dizziness is a little different; it’s almost like being drunk without the euphoria.  I’m not nauseous, which helps; with the vertigo I am.  If I move slowly, it’s reasonably manageable, though I don’t think I’ll be driving.  I’m trying to find out from other users if this is a temporary thing.  And a dose related thing.  Right now, I’m on a very low dose; therapeutic  dose could be three, four, or even five times the dose I’m on.  I haven’t really noticed any effect on my pain, but I wouldn’t have expected it to happen this quickly anyway.  So I’ll try it for a week, see how it goes, then try the Zoloft.

A friend pointed me this morning to a link that discussed pain in a really intelligent, thoughtful way.  Chronic pain is so hard to quantify.  I’ve had some severe pain in my life; childbirth, though that wasn’t nearly as bad as I expected (I’d rate it about an 8), and the headaches when I had meningitis  and the pain from gall bladder attacks were both bad enough to induce vomiting from the pain alone. So that’s what I rate as a 10 on the numerical scale.  The most severe pain I can ever remember.  Contrasted with that pain, my day to day pain rates about a 5.  The problem with that is that five isn’t horrid.  Until you realize it’s never going to end.

That post linked to this one.  One of the comments on this post made a wonderful analogy; I’d like to give attribute but the poster was simply named as anonymous.  Here’s what this pain sufferer said:

I wonder if one of the biggest challenges with classifying pain is the fact that there are 2 types, transitory & chronic. Transitory pain can be excruciatingly awful, such as a broken bone, or a migraine, or childbirth… but it goes away. A few days of medication, and there is a resolution. It is clear that it can be “fixed” by drugs, breathing techniques, meditation or distraction techniques.

Chronic pain is a trickier beast. If you have a rock in your shoe, it is not a pain worth mentioning. It is a 1 maybe a 2. The assumption is that the rock can be shaken loose, that the foot will soon be comfortable again, since it is a small pain. It isn’t much, really, just a little thing. An aggravation in your shoe.

But it isn’t a little thing at all.

At first, it is an annoyance, really. An aggravation, if you tend towards anger. But after a while, the pain dominates your thinking. All you can think about is how long until I can take the pebble out of my shoe.

You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower. When that doesn’t work, you walk faster.

You buy better shoes. You buy a cane. You take Tylenol, and Advil, but the pebble is still there.

You try hopping. You try crawling. Still a pebble.

Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining.

“What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? I can barely think past the constant background noise of the pebble! How am I supposed to work as well as I used to?

But of course no one else can see the pebble. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Pain is a transient thing, after all. No one could REALLY be in pain ALL the time.

Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say.

Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

Chronic pain doesn’t have to be a strong pain to have a strong effect on your quality of life. Even a chronic pain of 2 or 3 should be taken as seriously as a chronic pain of 7 or 8, because your life changes in so many ways.

And it doesn’t just affect the person with the pain. My kids are 6 & 8 and my daughter has never known me when I wasn’t in pain, and my son was too young to remember it.

My pain affects their life every day, and I hate that. I find it so hard to live with that knowledge.

It doesn’t have to be a 10 on the pain scale to be a 10 on the “negatively affects quality of life” scale. If a doctor can give me back my quality of life by medicating my pain, even if my pain isn’t a 5 or higher, then why on earth would they choose to not medicate it? Why would one force my kids to make sacrifices in the richness of their life experiences just because one thinks my pain isn’t strong enough to warrant treating with anything more than over the counter meds? If OTC meds were working for me, I wouldn’t be in the doctor’s office saying I’m in pain and please help me do something about it. I’d be out there doing fun stuff with my kids and enjoying my life to the fullest. Yet, being young, and female, and diagnosed with fibromyalgia among other things, I find it next to impossible to get adequate pain control, and our lives are the poorer for it.

This is the root of chronic pain.  It changes our lives, every day, every minute, all the time.  It makes my son think twice before he asks me to get up to come see something he wants to show me.  It makes him ask how just going to watch him play baseball can wear me out so much. It makes my family schedule shopping trips around my pain schedule.  It makes my husband avoid intimacy because he’s concerned about my pain.  It makes me rethink and reroute everything I do. It adds stress to my thoughts and to my relationships, not to mention my finances.  It causes grief, anger, and transient depression.  It’s always there. The affect it has on my family is worse than the pain, so often I do things I probably shouldn’t because I want to be there for my family, and then of course, there’s the payment due, in the form of days or even weeks of a flare caused by doing too much.

It’s more than four years since I first noticed the symptoms; the fatigue and the brain fog was the worst at first, and I didn’t understand it.  Then the last two years it’s been the pain. And it’s still getting worse.  More symptoms, more diagnoses, more drugs and tests and consults with doctors who simply see me as an overweight middle aged pre-menopausal depressed* female with multiple complaints.  They turf me to the next guy in line and never think about how my disease affects my life.

One more link: a really helpful, thoughtful pain scale: The Mankowski Pain Scale.  It really is the most practical scale I’ve seen.  On her scale, I’m chronically at five or six, with flares to eight.

Current plan: Continue trial of gabapentin for at least a week.  Waiting for approval for the following consults: ENT, GI (colonoscopy), Physical Therapy, possibly Rheumatology.  See doc in two weeks.  Remind her of elevated cortisol and see if aldosterone remains elevated.

*Re: depressed: I always need to make it clear that they see me as depressed, but I am not.  I have moments of depression, as anyone with a chronic issue would, but other than my pain, I love my life, my family, my fiber obsession, music, all the things I do.  I see myself as a very lucky, blessed woman with so many good things in my life, and I appreciate all of then every minute of every day.    There is nothing wrong with a diagnosis of depression when it’s justified, but too often it’s the box they put us in when they can’t figure out (or deal with) what is wrong with us.

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