Fear of Pain



We know all too well, those of us who have Lupus SLE, pancreatitis, autoimmune illnesses or any chronic pain illness the PAIN. We learn after awhile what helps a bit, what doesn’t, how we tense up when we feel the worse pain or attack is beginning. As it’s been said, “Pain Demands to be Felt” that is after the “Fight or Flight” response fails. But what if there is no pain medication, holistic product, meditation or way to lessen that extreme pain?

As it’s been said, “Pain Demands to be Felt” that is after the “Fight or Flight” response fails.

That is the unique position I’m in. I am allergic or can’t tolerate any of the big gun pain meds. Believe me, after ten years of doctors trying, through process of painful elimination, I’ve learned one med at a time my body and opioids do not go together. I am allergic to morphine, dilaudid makes me ill and exasperates a bile duct problem I have which causes more pain. Oral, IV it doesn’t matter. Vicodin, Percocet, Tylenol with codeine it doesn’t matter, no go. I’ve used over the counter, holistic, essential oils, etc.  we are talking about excruciating pain like kidney stones, acute pancreatitis attacks, etc. also, I can’t take ibuprofen products.

Recently, after a very painful bout of acute pancreatitis, and the realization while in the hospital that dilaudid made it worse, my doctor decided to try me on the Fentynal patch. It’s a big gun but in patch form it would go into my system slowly for 72 hours. I wouldn’t feel the pain relief for around 12 hours. In those 12 hours I’d be able to use the ONLY medication that works for my moderate pain, Tramadol.

I was so hopeful but after reading horror stories about the patch thought this could be a nightmare as well. It was the first time I’ve been afraid of my Lupus. Never before did it scare me. Not the kidney damage, or the infections, or the pancreas being attacked. I was scared that I’d never find a medication I could be SURE would control the worst of the worst attack, flare, whatever. If you haven’t heard already, lupus can hurt like a son of a gun, over and above the usually chronic pain that invades our every day lives like a fly that keeps buzzing around your face and won’t leave you alone. You can’t concentrate, carry on a conversation with someone, read a book, take a shower, feed the dog, make some soup, get the mail, you get the point. So, what do you do?! I pray. Because I realize I’m in a predicament here and only God can give me the strength I’ll need to get through this day.

Regarding the “patch” I would put it on when I felt an attack coming on and just pray it kicks in before the pain reaches NUMBER 9 or 10 on that smiley face chart. It wasn’t long before I had an attack. I put the patch on, went to bed and laid there in the fetal position after also taking my Tramadol and carafate, etc. This was at 9pm. I woke up at 6am in a cold sweat, so nauseated and dizzy. I couldn’t stand up. I rolled out of bed and onto the floor on all fours. The pain had subsided from the pancreatitis BUT the side effects of the patch were so scary I was sure I’d overdosed somehow on the lowest dose patch they make. I got back in bed and thought I’m just working myself up into a panic attack or anxiety. To relax. I tried, but it was horrible. I can’t explain it only to say, I’d rather experience the pain than what I was feeling. I’d read that I was to keep the patch on for 72 hours (if it was working for me) but knew Fentynal and I weren’t going to be friends either so I took the patch off per instructions and laid in bed all day (I’d spoken to the doctors about my symptoms, I wasn’t overdosing,  I was sensitive to it) praying these symptoms would go away. I was too ill to even get up to put clothes on to get to hospital but had to have my pancreas levels checked and to make sure the patch symptoms weren’t dangerous.

So, Pain is Scarey. I worry about if I’m in a car accident, or break my leg! I guess a spinal block or just put me to sleep until such time you can wake me up and the pain won’t be so bad. Tramadol is a lot like Tylenol with codeine and many people say it doesn’t help them at all. It’s not for excruciating pain, but it does allow me to function from the pain of my Lupus. It’s Godsend. I guess this is where Lupus has me. Scared. And I don’t like this at all. Vulnerable. I need to work on that.


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