More Than a Pain in the Butt

Wasn't the story about the loss of my foot fun? It's the kind of story that you can tell at dinner gatherings, showing off pictures that I provided and everything. Trust me. There's nothing quite like bringing up meal-destroying material during family get-togethers. If they argue politics, you can bring it to a stop with pics of diabetic feet in varying states of distress. You don't even have to use my blog. Just let Google ruin the appetites of those you despise. 

I think it's time I concentrated on something I brought up during The Saga of the Foot. Pain management. If you don't control your diabetes, you're going to experience a measure of diabetic neuropathy at some point. Personally, I have some bonus pains. The osteomyelitis in the third metatarsal of my right foot that healed a bit goofy is aching as I type this. The Charcot foot also provides some interesting pains in the collapsed arches. And as a bonus, I once put on weight so swiftly you'd think I'd gotten pregnant, which would be a neat trick for someone without any female parts. That excess weight - concentrated in the trunk of my body - puts crushing weight on my lower spine, which has become arthritic, as well as showing signs of degenerative disc disease. 

The practice of medicine is constantly changing. What was once thought of as perfectly normal treatment is viewed with a frown or worse later on. Once upon a time, cocaine was an over-the-counter item at your local pharmacy. Go ahead and try asking where it's shelved now. I'll wait.

So the old view of pain management: give the patient the amount of painkiller that's appropriate for their level of pain. Tell them they can take that dose so many times a day and to call for a refill when they run out. The baseline of this tended to be 120 tablets of a narcotic that's taken every six hours as needed. For me, this was Percocet. It's a mix of oxycodone and acetaminophen.

But my doctor between 2006 to 2010 did BETTER! He prescribed a baseline painkiller to go with the short-acting stuff. MS Contin. That's Morphine Sulfate Continuous release. 

You already know this story, right? When you take narcotic painkillers like clockwork, you develop a tolerance to them. To counter this, the doctor increases the doses. My dosing when I started: Percocet - 5/650 - that's 5 mg. of oxycodone and 650 mg. of acetaminophen - every six hours and 15 mg. MS Contin every eight hours. Within 10 years, I moved up to taking straight oxycodone, 60 mg. four times a day and 75 mg. of MS Contin three times a day. 

When people heard these doses, they stood in wonder at the fact that I was conscious and at all functional.

There's one other medication that was mixed in there that I have some complicated thoughts on. When I first started taking it back in the mid-90's, it was called Ultram. Today it's known more commonly by its generic name, tramadol. It was labelled a synthetic opioid from the start, but wasn't classified as a controlled substance until 2 July 2014. Tramadol has been the only medication that effectively addresses my diabetic neuropathy without side effects. My understanding of it was that your body didn't develop a tolerance to it the way it would common opioids. When I started taking this medication during my very first symptoms of neuropathy, I would take up to 100 mg. four times a day. That's because I wasn't controlling my blood sugars, so my pain was continuous and intense. (That dose has dropped since then.)

For me, if my tramadol doses were suspended for whatever reason, it meant nothing to me. I didn't suffer withdrawals. Not even a little bit. All I'd ever feel was an increase in my neuropathy pain.

But others... If they had a history of opioid addiction, tramadol was a trigger for them. I saw this first hand with a roommate I had. He was prescribed 50 mg. three times a day as needed for pain from fibromyalgia, a different neurological disorder that causes pain. The problem was that there was once a point in his life when it was entirely possible 80% of his body was made of opium. Like anyone with an addiction, he would go through his 30-day tramadol supply in less than 30 days. He would then have to wait for his doctor to refill it, and his doctor was in absolutely no rush to do so. In that time, he would suffer withdrawals, along with the pain the medication was supposed to address.

I thought he was insane. Tramadol isn't addictive. That's what I thought. anyway. As I've said several times before, every patient is different. So I guess it really was a trigger for opioid addicts.

There are other medications beyond controlled substances to control pain. Like Neurontin, also known as gabapentin. It's an anti-seizure drug that has a few off-label uses, like pain management and as a mood stabilizer. And boy, do I have a story about this one!

I was in the hospital for depression. Yes, your charming host and narrator had attempted to - What's the phrase all the kids are using these days? - unalive himself. I was successful and have been writing this blog from beyond the grave. (Okay, maybe not. Would have made this blog a lot more interesting, though, wouldn't it? 😁) My doctors - all psychiatrists - knew that gabapentin was used to control neuropathy pain. I was already taking 300 mg. three times a day, but I was still experiencing pain. To address this, they doubled my dose.

This is where things started going wrong for me. I became absolutely RAVENOUS! I wasn't just eating what was on my meal trays, but also whatever other patients didn't want from their trays. I couldn't control my hunger, and it wasn't really sated by eating. That's when I started gaining weight. 

I was told by one of the med nurses that gabapentin can hit with a double-whammy on the side effects front. Not only can it increase hunger, but slow down metabolism. That's what seemed to be happening to me.

By the time I'd tacked on 20 extra pounds, I explained to the nurses that controlled the ward that I needed to be seen by a neurologist or pain specialist. They said they'd call for one, and I waited. A week later, having packed on some more weight, I told them that I REALLY needed a doctor to come and address my problem with gabapentin. They said they'd call again, and I waited again. Another week went by, and by the end of it I'd gained an extra 30 pounds in about 30 days.

Remember when I brought up The Patient's Bill of Rights? Well, I could easily refuse to take the gabapentin, but I wasn't being treated with tramadol at the time, so I would have suffered a lot of pain. Besides, that would take a few days to become a problem. I needed a faster solution.

As the med nurse was making his rounds the next morning, he handed me my insulin syringe... and I handed it back. "No thanks," I said, remaining neutral to what was obviously not going to go over well in a psych ward! When asked why I would refuse my life-sustaining medication, I replied, "Well, I've insisted that I need a doctor to address my neuropathy pain. It's two weeks since my first request and no one's shown up. Since it's my right to refuse medications, I'll skip the insulin and more than likely become incredibly sick. That's when I'll be moved to a medical ward, and then some will HAVE TO come see me."

As insane as the idea seemed on its surface, it made a lot of sense. And by keeping my cool, I came across as perfectly rational. The head nurse eventually came to discuss the situation. He ASKED that I take my morning dose and he would personally call for a neurologist or pain specialist. I agreed, but warned that my lunch dose wouldn't be taken if no one showed up.

Two hours later, I was discussing treatment options with a pain specialist. This was the doctor who took a liking to my phrase "pain seizures." What can I say? I have a way with words and word-like substances. 😉

Because of where I'm currently located, finding proper pain management has been difficult. I'm actually scheduled to see a new pain doc in two weeks, so we'll see how that pans out. I came away from the last one determined to never see him again, despite him saying he was willing to treat me. (Maybe I should cover good and bad doctors soon?)

Meanwhile, my PCP has been handling my pain. It becomes somewhat difficult to do that with me because something on me is always breaking. This will sound insane, but just after I started seeing him, I sneezed so hard that I separated a rib from my sternum. It even has a name, costochondral separation. And this was the second time this had happened to me! Every breath was absolute agony.

So what can I say in summation to all of this? I mean, you're going to experience some intense pain if you're not controlling your diabetes. When and if that happens, what should you do?

1. Talk openly and honestly with your doctor. I've said as much before, but it warrants repeating. If you're not communicating with your doctor, you're in for a world of trouble. Improper treatments and medications can make things much, much worse.
2. Always, ALWAYS, ALWAYS, ALWAYS, ALWAYS discuss other options before turning to narcotics. There are other medications that can work depending on the severity of your pain. 
3. See recommended specialists. As the complications of diabetes accumulate, the list of doctors you'll need to see is going to get annoying at the very least. But you have to see them because they're specialists. They focus on just one aspect of medicine. They'll know about the latest treatments available to you.
4. Do not seek out narcotics first! Once you open that can of worms, you're in for a lot of needless drama. My fight to get off those absurdly high doses of opioids was one of the most difficult things I could do while simply sitting around. I was not addicted to them, but my body had become dependent on those high doses. (Where I exhibited addiction behavior was with cigarettes, which is a different story.) Overall, it was a pain to reduce my painkillers.
5. Take medications AS PRESCRIBED! Whatever the medication is, don't get creative. A common misconception is that "more equals faster." It does not. Not ever. Never forget that accidental overdoses are a thing that has claimed countless lives. (See numerous celebrity deaths for reference.)

That's all I have for today, folks. But you know what might be fun...? Putting up an unedited post. One that includes my every spelling and grammatical error. I don't know if I could pull that off. All of those little red lines beneath my mistakes would drive me up a wall!

And now... Place your bets! Can Rob get the picture of the beautiful, scantily clad young woman this time? You know he can't, but he'll keep trying. Let's see what today's photographic error is!

Well, we got close. It's her knee.