My husband got home from work this evening and almost asphyxiated me when he used the bathroom without shutting the door or turning the exhaust fan on (get ready for my 10 commandments of pooping post), and when he was done, he plopped down on the bed with his giant cloud of stink and had that look on his face that could only mean one thing; he had an epiphany. Many of the greatest minds on the planet do their best thinking while dropping deuce.
He explained how he sometimes gets pins and needles when he spends too much time sitting on the toilet because it cuts the circulation off, and it made him think maybe my problem is circulatory rather than neurological. When did I ever describe my pain as pins and needles? When your leg falls asleep, it’s an uncomfortable sensation that’s difficult to describe, but I wouldn’t call it painful. At least not as I perceive it.
I gave him a little education on what it might feel like, but even explaining, it’s impossible to know how those words translate to his own experience. Pain is unique to the person experiencing it, which is why it’s difficult when asked what the quality of your pain is.
Sometimes our words get replaced in our medical records based on what makes sense to the provider. That being the case, the quality of my abdominal pain is crampy. A word that I’ve never used to describe my Crohn’s related pain. I tell them it’s like an alien is trying to bust out of my guts, that it feels like I’ve got a bunch of razor blades snaking through my intestines, and yes, there is some cramping from the gas and diarrhea, but all of this can’t be quantified into a single word like “crampy”.
The same goes for neuropathic pain. About the best I can come up with is “burning”. It does burn, but it also stabs, and itches like a motherfucker.
Let’s start with the burning. It’s a constant pain that varies throughout the day and gets much worse at night. I have yet to find an explanation for this, but I assume it’s similar to the cyclical rhythm of RLS. It could also be that while supine, or laying down, there isn’t as much circulatory resistance to the extremities, so the added blood flow warms them up and intensifies the burning sensation. It feels like hot oil burns from my feet, up to my knees, and in my fingertips. Anything that touches my skin results in excruciating pain, which is why I’ve taken to sleeping on top of the sheets and under a blanket with my feet hanging out. I can’t give the pain a number, because when I think I’m at an 8, I get the stabbing pain that cranks it up to a 20.
Stabbing. Just like it says, it’s the feeling of the skin being pierced with a dull needle full of rubbing alcohol, times 1,000. Or a million bee stings on top of a sunburn all over every millimeter of my skin on the aforementioned areas. In short, it’s not a picnic.
Lastly, there’s the itching. It’s not constant, but it’s insatiable once it starts. It’s very similar to having an itchy rash. If I accidentally scratch, it only gets worse. I’ve scratched myself raw multiple times, and when it gets really bad, I have to sleep in knee high socks, because I can and will rip my skin off while half asleep.
I’ve tried all sorts of stuff for this pain including tylenol, biofreeze, aspercream, voltaren gel, lidocaine patches cut up and adhered to the most painful areas, gabapentin, oxy/hydrocodone, and the only thing that works is Tramadol. This is not an advertisement for Tramadol, but it has been my miracle. While relatively weak on other types of pain, it’s a fucking champ at slashing the neuropathy pain to an acceptable level. It also helps somewhat with my abdominal pain and slows my bowels down a bit, which makes me a happy camper.
Pain is not the only vexing component of PN. There’s also proprioception loss, which means you have no idea where you are in relation to your surroundings. I frequently run into doorways, and climbing/descending stairs is risky business. Darkness or closing my eyes quite literally turns my world upside-down. I’ll topple over, and I’m on the ground before I realize what was happening. Loss of awareness of joint position results in strains and sprains of my fingers, toes, ankles, and knees, and even broken bones.
On paper, peripheral neuropathy is a benign condition and doesn’t seem like a big deal. From my perspective, it’s a huge fucking deal, even in contrast to the illnesses I have that could quite possibly kill me long before I’m older and grayer.
I’m stretching my pills so I don’t run out before I can request a refill (which happens to fall on a Saturday. Bastards.). The next few days will be rough, but I’ll handle them the same way I always do. In an insomniac haze. Then I’ll get my 20 day supply, which happens to be my last refill on this current prescription, and hope to the God of Bean Burritos that my prescription gets renewed next month. It’s a crapshoot. For now, I’ll count myself lucky that I’ll have 20 days of managed pain and go from there.