Understanding CRPS


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.

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9 thoughts on “Understanding CRPS

  1. I just wanted to share a bit of sympathy. Chronic pain is awful, and the current issues with pain medications do not make it any easier. Perception of pain does get screwy, too. I fractured my ankle a few months ago and spent a week walking around on it because, well, I could so it couldn’t possibly be broken, right? My flavor of pain is Crohn’s Disease, with all of the delightful secondary add ons. I spent a bit of time in pain management and one thing I learned–if the meds make you functional they are necessary. Rotating pain meds can help a bit with dependence, but any long term medication can cause a physical dependence. It has gotten to the point I just expect a really crappy week or two spent in withdrawl after a surgery or bad flare up. That doesn’t mean you don’t need it. I have had to take long term steroids and they cause a physical dependence and you have to taper off of them. I couldn’t help responding when I saw this and the next post… two things that I can get behind, pain that makes you wonder just how high that damn pain scale goes before you explode and the terror that the war on opiates can cause the innocent chronic pain sufferer. Hoping for a cure for you, better treatments, better understanding, and some precious precious moments without pain.

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    1. My father has Crohn’s it isn’t a condition I would wish on my worst enemy.

      And thank you for reaching out. You’re right, dependency issues exist for any medication. But in the current climate, I do get a little afraid for all us chronic pain sufferers. At some point, the world, including medical professionals are going to have to wake up to the fact that opiates are the only thing keeping some of us going. I spent 5 months in agony, trying to find a medication balance that works. I found it in Lyrica, but I still need the opiates more days than not.

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    2. And yeah, at the ER in triage they asked my pain level and I just looked at them for a minute because he said on a scale of one to ten… to which I finally responded admit me and just remove the leg. So he wrote ten. Nope, not accurate. If it was a 10, I wouldn’t have bothered to come.

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  2. I’m so sorry. I feel your pain. I, too, suffer from CRPS. Nothing, absolutely nothing helps my pain, not even pain killers. So I’m even gladder to hear that you get a little relief from some of the medications. No one should have to endure this. I also want to saw my leg off at times. My blood pressure constantly stays so high due to the pain, and I’m close to passing out. All. The. Time. Showers are the absolute worse. The water feels like firey acid, and trying to wash up feels like using sandpaper on raw skin. The pain is literally unimaginable until one is actually experiencing it.

    And you’re spot on about the pain level. It’s not a 10. It’s more like a solid 30. I’ve had bad experiences telling the nurses I’m “at a 10” because they want to explain 10 is the highest it goes, after I told them I’m wayyy beyond a ten. Last week at the doctor’s, I just told the nurse it’s a 10, and she said, “Okay, well 9 is crying, and 10 is like you’re about to pass out.” It’s beyond aggravating. I just told her that I’m close to passing out all the time. No one understands our pain, but it definitely helps to have a good support system, such as family and friends.

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    1. I am so sorry and everyone thinks oh, pain meds she must be pain free. Nope, I don’t remember the last time I was pain free, it just makes the pain more tolerable. I am so sorry they don’t make you even a little bit more comfortable in your own skin.

      Suggestion: when they ask your pain level ask for a saw to cut off your leg because it will hurt less. I get decent results with that answer to “what’s your pain level” and “if someone ran over you with a car, multiple times, then you’d understand what I live with daily.”

      Daily pain should not be “hit by a car”.

      I have the other spectrum. Cold makes me hurt worse so hot showers I can do but let me go outside without a jacket when it’s 65 degrees and I’ll cry from the pain.

      And clothes hurt when your skin is that sensitive. I have never been so aware of a pair of pants in my life some days. That is the only pain the lidocaine helps with is the skin sensitivity. It doesn’t soak into my hip and make me feel less like I’ve been hit by a truck. But I can use it to not want to scream because my pants moved wrong.

      I’m currently trying to write about it from a patient’s stand point to give more understanding to what we feel and how much it hurts to just exist.

      I can’t always explain my pain but when I can phrases like it feels like my bones have turned to dust in my skin come tumbling out and imagine if a building fell on you.

      I am so sorry you have this awful disorder or disease too. It is truly hellish.

      Liked by 1 person

    1. Unfortunately it will be tomorrow before I get it. I’ve managed all of 3 hours of sleep in the last 48 because of pain and I just took a couple of Tylenol PM along with 2 Benadryl because I hope to get more than 3 hours of sleep tonight.

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      1. I know what you mean. The only time I sleep is from passing out from exhaustion. I just sent the email, but definitely take your time responding; and more importantly get you some rest if possible.

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