Specific Conditions

Figuring Out Meds!

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Oh… meds. Sorting out meds is such an adventure!

Sometimes we get lucky and hit the jackpot the first time around! That’s always awesome. Other times, it’s not so easy!

It’s always fun when we try to figure out a new medication these days. Because I already take a number of different medications, there are risks for interactions. So, sometimes I have to sit in the doctor’s office for a while as we run different medication options through the system and wait to see if any interactions pop up. At my first visit with my neurologist, we had to go through three or four medications before we found one that didn’t interact with any of my other meds!

This time, my rheumatologist and I were trying to find a new pain medication to add to the mix.

We decided to start with meloxicam! It’s an NSAID like Advil or Aleve. My pain is inflammatory, and NSAIDs are anti-inflammatory. At first, things were great! Before taking meloxicam, my inflammation was bad enough that I couldn’t close my hand in a fist. A few hours after taking meloxicam…

I could make a fist!

But things went downhill from there. After the initial feeling of mild pain relief, things didn’t really get better. In fact… they actually got worse when the meloxicam started triggering my cyclic vomiting syndrome.

At first, I didn’t even realize it was the meloxicam.

Cyclic vomiting episodes happen on their own, so I just figured it was just a random episode. But then another one happened the next day. I never have episodes two days in a row, but I chalked that up to being a total fluke. Then I had an episode for a third day in a row.

That’s not a fluke.

I started thinking over the timing of the episodes and anything that had changed over the days leading up to the episodes. That’s when I realized those last three episodes had all happened like clockwork within a few hours of taking the meloxicam. So, I skipped the next day’s dose. And my stomach finally started to feel better!

What a relief.

I called my doctor and he officially took me off of meloxicam. We’re now trying a new NSAID called diclofenac. It’s possible that I will be fine on diclofenac, but it’s also possible that I won’t be able to tolerate most prescription NSAIDs because of my cyclic vomiting syndrome. It’s going to take some trial and error to find out.

I do know that I’m okay with prescription strength Advil! It doesn’t do a whole lot for my pain, but at least it’s better than nothing. So if it turns out that diclofenac triggers my cyclic vomiting syndrome, too, I’m not too worried. At least I have prescription strength Advil as a fallback. And I have a great rheumatologist.

I’m sure we’ll figure out something to keep my pain levels low enough to keep me functional!

My Favorite Pain Scale!

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For the longest time, I was lost when someone would ask me where my pain was on a scale of 0-10. A typical pain scale looks like this:

All of this is very, very subjective.

For example, I had someone tell me that natural labor was the worst pain I’d ever experience in my life. For me, it wasn’t. My worst pain has caused me to pass out. Natural labor didn’t come close. So for that person, natural labor would have been a 10 on a scale like this. For me, the very worst of it was an 8 to a low 9… and I had a long second degree tear (a second degree tear involves muscle). I would put most of my labor in the 5-7 range.

This one is a little better, but the whole “facial grimace” thing doesn’t work for me, either. I will be laughing and cracking jokes all the way up through level 7-8 pain. Until I get to the point of not being able to think straight, I’ll be finding something to laugh about. Humor is my favorite coping mechanism!

You know what else doesn’t work with this one?

Look at level 4-6. “…may interfere with your ability to do certain normal activities such as reading, watching TV, having a phone conversation, etc.” I showed this pain scale to my RA support group and they cracked up laughing. “Level 4-6? Oh you mean Monday – Thursday?” Level 4-6 pain is just normal everyday pain for a lot of us. We are watching TV, on our phones, and reading specifically to distract us from the pain. So this pain scale doesn’t work for chronic pain patients, either.

Of course there’s always this pain scale…

Slightly dramatic. But sometimes very tempting to use!

So if those three don’t work… which pain scale do I prefer? I have two!

This is the pain scale that helped me figure out how to rate my pain. Noting how much the pain is affecting my activity level and my ability to think or talk was incredibly helpful!

Even better… I found out this looks like it is a variation of the Mankoski pain scale:

As someone who deals with chronic pain of varying intensities, I feel like this is very accurate. When my pain gets to the level that it’s hard to concentrate well enough to hold a conversation, mid level painkillers are only mildly effective. The Mankoski pain scale puts both of those at an 8.

A NOTE TO MEDICAL PROFESSIONALS:
If you have a chronic pain patient, they may present in a couple of ways.

  1. They may have become sensitized to pain. They might be aware of their pain all the time. Sometimes what happens is something called central sensitization. The pain nerves become more active and the body just starts feeling more pain all the time.

    OR…
  2. They may have become desensitized to pain. We see this happen ALL the time in my rheumatoid arthritis support group. People miss broken feet and fractured ankles for days to even weeks. They’re so used to their RA pain that walking around on a fracture was nothing to them.

I know for me, I have become desensitized to pain. This has actually caused some issues for me because I don’t present like a typical patient during an injury assessment examination when the assessment requires looking for tenderness. We’ve had torn ligaments and muscles show up on MRIs and I hadn’t flinched when it was palpated during the exam. It doesn’t really faze me compared to the pain I deal with on a daily basis. I’ll know when something feels injured and likely needs to be checked. I just don’t present normally during the assessment. For me, I need providers who trust me when I simply say, “Yes, that’s tender,” and believe that I’m not being melodramatic when I give them examples of how an injury is impacting my functionality.

Thankfully, my regular doctors know how I am and are fantastic about this. Know your patients!

Chronic pain friends: I am working on getting a printable pain scale ready for the site! Once it’s ready, I’ll link it back to here.

Love and gentle hugs ❤
Emlyn

Managing My Daily Meds

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One thing I hear often is, “You must take a lot of meds!” Well… yes and no! It’s really a matter of perspective. To some people, what I take is a lot. To others, it’s not much at all! Personally, I don’t feel like it’s a burden. I’m a lifelong asthmatic, so I’ve been taking daily meds of some kind for as long as I can remember. It’s just what I do!

Yes, it’s annoying sometimes.

Yes, I get grumpy about it and don’t feel like doing it some days.

But I still try to be a good patient and stay on top of my meds. So, without further ado, here’s my med box!

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Upcoming Series!

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You guys! I am super excited about this. I am working on a very big project. A little while ago, I was talking to my therapist about how hard it was being where I am with my RA and lupus. Right now, we’re still waiting to see if my new medications will work. I’m not working. I’m stuck at home. I can’t go outside much during the day because of my super sun sensitivity. I can’t go out much at night because I need sleep. It’s a lot of watchful waiting stuck at home, and I don’t feel very productive.

The other thing that’s hard is that what I can do changes from day to day.

It’s really hard to have a routine when you don’t know what you’ll be able to do from one day to the next. Most of the time, I end up feeling like I’m just sitting around waiting to get better. It’s not very beneficial for my mental and emotional health.

So… I came up with something!

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T-3 Days: Colonoscopy Prep & Brain Meds

/ emlynboyd

So… life with multiple chronic conditions gets interesting again! Yesterday, my neurologist changed my brain meds for my Chiari malformation. That was a fun chat. He warned me that my new medication might make me a little out of it.

Me: That’s nothing new.

Doc: You might tell the same story over and over.

Me: I do that already!

Doc: You might forget what you’re doing while you’re doing it.

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