If I was talking to someone with CRPS and didn’t have it, I would think they were probably an opiate addict, because there are meds to treat the pain… which is true and not true at the same time.
4 days out of 7, I consider having my leg removed at the hip, which sounds awful, but the pain is so intense, that I can’t think of any other way to stop it than amputation. The meds do help with the pain; Lyrica, Gabapentin, and Cymbalta all make the pain more manageable and keep me from cutting off my leg with a Sawzall, which I am considering today. On that stupid smiley face pain scale at the hospital and doctor’s office, my pain doesn’t even come close to any of those smiley faces. It is well above all those. That’s with the Lyrica. I’d say it’s a 15 on the average day.
Today is a bad day. I’m avoiding showering because I know how much it will hurt to get into the tub and back out and to stand and shower. And I’m out of Vicodin, which is why I said if I wasn’t suffering from CRPS, I’d think CRPS patients were drug seeking. I’d say my pain just sitting in the chair and typing this blog post is a 25. I know, it sounds ridiculous to think that pain can get that high without actually accidentally removing a limb, but it can.
My leg feels like it is encased in ice, I’ve learned this is caused by the nerve pain I’m experiencing and the worse the pain is, the more my leg feels ice cold. But when I tell people that, they look at me like I am crazy. So what happens when my pain is this high? I can’t eat. The smell of food makes me want to puke. I haven’t eaten all day. Not a bite of food. Instead, I have taken 1,000 mgs of Tylenol and a butalbital.
They aren’t helping. And before you lecture me on taking that much tylenol on an empty stomach, well, I couldn’t stand to eat, so I had to take it on an empty stomach. I was hoping it might provide a touch of relief, just enough to make it so I could at least choke down a piece of toast. It didn’t. When I’m in this much pain, if I manage to fall asleep and last night it took 2 Nyquil, 2 clonazepam, 1 150mg Lyrica and a 4mg tizanidine to fall asleep. I grind my teeth much more. Around 3 am, my husband woke me up and had me move to the spare room because he had to work today and couldn’t sleep through my teeth grinding. I ate a mouth guard. There weren’t enough pieces to make a whole one, so I know I swallowed some of the plastic. I also broke a tooth in my sleep from the grinding and clenching because of the pain. Thursday was a killer for me. I took my last two Vicodin until I refill on December 5th because I couldn’t eat my pain was so high and I was considering the Sawzall again every time I came to the garage to have a cigarette. This means I have 10 very long days until I can refill. Wonder if I can go that long without a shower? It’s already been 4 days. Everyone I have talked to with CRPS says the same thing, they count their days in pain killers. Half of them are on much stronger pills than Vicodin. And all of them say it’s a miracle if they make it 30 days and still have pain killers left at the end of them, because anything can turn mild pain into excruciating pain that leaves them sick. Like I’m experiencing right now.
Until CRPS, I thought I was pretty pain tolerant. I’ve accidentally shoved a wood burner into both thumbs, I’ve cut off the tip of my finger with scissors, I have had migraines for 29 years and I thought they were bad. Nothing compares to this, none of that pain prepared me for what I experience now. And then there are the angry days, like today. They are usual days when I am experiencing a lot of pain. I get angry at the world. I talk to my father constantly about the drugs because he’s been in AA for 34 years and has some experience with addiction. But he doesn’t think I’m an addict. He’s seen the MCGill Pain index scale and believes I am in as much pain as I think. I’m just ready for the pain to stop.