It’s been a heck of a week, friends.
Friday was a trip to the pain management clinic, which — per usual — was wholeheartedly depressing. I find that I feel even worse whenever I come out of those appointments because I realize how useless they are. Pain management clinics, that is. Massachusetts as a whole is now attempting to curb prescription drug addiction. That’s great. That’s dandy. But now my clinic’s stance is that they will not prescribe opioid pain medication to anyone except for cancer patients. We’re talking even something like Tylenol 3, which my pediatrician used to prescribe to me after the First Accident. Patients who’ve (responsibly) used Percocet or Vicodin for years are now finding themselves wanting and in withdrawal. Actual pain patients are being treated as addicts.
So I get my nerve medication and antidepressants, but then the big gaping black hole they don’t cover is alive and writhing and screaming in my head all day, every day. When I asked how to handle that hole, the nurse practitioner, oblivious to the fact that she has never experienced a decade’s worth of pain, actually had the gall to say, “You have to learn to live with the new you.”
Pretty close to my actual reaction.
I could’ve kicked her teeth in, but that probably would’ve been labeled “pill-seeking behavior.” This is also what she said to me before my spine surgery, so I decided to take a year-long sabbatical from their clinic until I became too complicated for my surgeon’s pain management office. I didn’t want to start all over again with new doctors, so I returned, my pain now widespread and diffuse.
The problem is that there is no specific genesis for this pain I have. It started in my neck and back, sure. But now it’s in my head. It’s in my legs. It’s in my arms. It snakes throughout my trunk. How do you treat that? You can’t just inject something and expect it to reach the rest of the body.
Except you can. You can do an IV of lidocaine, apparently. That is what Monday’s adventure was. The pain team infused me with three syringes of lidocaine, which can at most be repeated once a month, and at its best will last about three to four weeks. The goal was to calm down my central nervous system enough for me to function properly. Sensors were applied to my chest so they could monitor my heart rate, and the blood pressure cuff kept constricting my arm every few minutes.
During the procedure? Heaven.
< Insert choir of angels >
The drug was injected over the span of about twenty minutes. The doctor kept asking me questions, waiting for side effects to kick in — which happened almost immediately. I swooned back into the pillow on the hospital bed, wagging my tongue around; it’d gone numb. My face was tingling. My eyes slid around in their sockets like pool balls. Suddenly every word I tried to say became a picture in my head, and the spaces in between sentences, in between syllables, became gargantuan. They came out of my mouth like a trail of drool. My body was jelly and seeped down the cot, collecting in a puddle on the stark white sheets. They kept asking me what my pain was on the normal one-to-ten scale. I started at about a six; I slurred my way to a one, which I haven’t experienced in more than ten years, and then ended at about a three. I was crying. The pain was almost gone. The pain was almost gone.
But not for long, naturally. Barely an hour after the procedure, once Husband had poured me into the car and then chauffeured me home, the base of my head was alight. My spine was crackling with fire. My hands and feet were jolting. What I think happened was that once they stopped injecting the medication, my body went from zero to sixty. No pain to all the pain. I spent the afternoon and evening snuggled up in bed with Fattie, waiting for the lidocaine to stop swirling around my bloodstream and settle down like the doctors said it would.
Hi there, Fattie Ding-Dongs!
Now it’s Thursday. Tuesday was all kinds of awful. Yesterday I was better, I actually felt good. And today, I’ve crashed. It’s been an emotional week, to say the least. It’s hard to have your hope dashed over and over again. The worst part is that this pain clinic said if the IV lidocaine doesn’t work, they would attempt an infusion of lidocaine mixed with ketamine. If that doesn’t work… shrug.
Sucks to be you!
It’s been a very trying time for both Husband and me. It’s difficult to stay optimistic when it seems that the pain management clinic is being so thoroughly unhelpful, refusing to prescribe pain pills in order to protect themselves from government crackdowns. The problem is that modern medicine doesn’t understand pain very well. It’s entirely subjective. Every person experiences it differently, and what is trite to one individual might crush another.
Every day this week has been depressing, so guess what? We’re ending on kittens.
I know you’d eat my corpse if it came down to it, but good God, you are all adorable fluff monsters.
Wear, Tear, & Care 
Ending on kittens…I approve. Did the same thing this week. 🙂
I’m enjoying reading you blog.
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Thanks so much, I just discovered yours as well, thanks to your group post. I love the name!
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Hi there, I’ve had exactly the same experience as you, although my conditions may be different to yours. I too have had a lignocaine infusion, and hoping that it would work, unfortunately it did no good whatsoever. So on returning to the pain clinic, I have been told I have one more option of medication to take, if that doesn’t work, then I guess, I will have to carry on as I have been , which has been over twenty years in pain. I hope they can sort something out for you to relieve your pain, sending you best wishes 😊
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Did you feel worse afterward? I’m trying to figure out why an anaesthetic would make me feel so God-awful. I guess it technically is a toxic drug that they’re injecting, even if it’s supposed to numb things. This week has just been terrible, though. I’m sorry that you are in the same situation that I am re: medication options. Sending you best wishes and many spoons!! ❤
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Yes I did. It made me feel really strange, they asked me while they we’re infusing me what pain level I was in. I was in 8 before, 8 whilst being done. The same after . I was really hoping that it would work for me. As I’m sure you did too. Also whilst it was being done, they were very concerned with my heart rate and pulse as they were really high. Not what I call a very good experience !!
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Gads – as a former EMT, I can’t believe they are using IV lido as a pain med – I knew it has been used in capsule form – but WOW – IV lido is a HEART med used in life-threatening emergencies. WOW.
I took the pill form of lido for almost a decade for neuropathy caused by nerves damaged during several back surgeries. Then, WHAM – started effecting my heart one day. Had to stop. I miss it, as its absence caused the pain to creep back into my life and piggyback upon other pain that lives in my body.
Made an error the other night – I was in so much pain in the middle of the night. Heat, ice, IF unit – nothing would help. In my middle of the night fog, I slap on lido patch – 30 min later – I am ready to climb walls – my heart rate out of control. DUH.
Pain Clinics IMHO are scams and they all suck. I have been to 6. I was literally kicked out of my last one last year. I called to make an appt for an injection and was told by the nurse, “we aren’t miracle workers – we can’t fix you. You can’t come back.” Period. WHAT? What did I do that prompted that nastiness?
On my own now – managing things based on my research – waiting for my new PCP to figure out what to do with me and waiting for European technology to be approved by our slacker FDA.
Keep writing and making pain “fun.” If we don’t, we will surely go mad!
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Oh-I have a comment on the use of ketamine for chronic pain. If its the “coma” therapy (well, not exactly a coma, but patients call it that. They put you out for a couple hrs w/ketamine, then wake you up. It is used in Europe. Not a permanent solution, but DOES help.
When I worked in neuro research, we used ketamine as surgical anesthesia (rats/mice). Powerful stuff. It helped the animals recover comfortably from the brain surgery we performed. Or so it seemed. Those that don’t get ketamine for the anesthesia had a prolonged recovery.
If someone offered me ketamine therapy – I jump at the chance. Not offered around here-Boston. Any mention of it raises eyebrows. Oh, these “experts” are SO behind the times. They should hop on Google Scholar more often and learn what’s going on in their own field.
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You’re in Boston? I’M in Boston!! They said that lidocaine/ketamine was the last resort before they had nothing else to offer! (Also, Boston? Friend? Yes!) Not sure if it’s the coma therapy. They have barely discussed that possibility with me.
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The infusion feels great for an hour or two but that’s it for me. Others get long lasting relief. I am still doing weekly lidocaine trigger point injections. They work and last for at least 3-5 days depending on where they are done. I wish you all the best!
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This. All of the this. SO MUCH THIS. YES TO ALL THIS.
Gah.
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I have had chronic pain for around 4 years.about 14 months sgo i hsd a single lignocaine infudion-it worked fir 2 weeks-2 whole weeks! Awsome. After a year of trying (a nd reacting adversley to most!)a whole heap of drugs, i did a 3 day set of lignocsine infusions.naturally i was excited and expecting benefit even greater than firdt one.-
Big letdown-im still in awful plsin PLUS a dsy after the last infusion i have developed a large red painful patch on inner upper arm-it feels like bad sunburn and has goosebumps over it at times. I am in tears!i just want to die!
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I FEEELLL FOR YOU, FOR ALL OF YOU! I KNEW YOU WERE OUT THERE YET, I WISHED, I HOPED, I PRAYED THAT YOU WEREN’T; THAT YOU REALLY DID NOT EXIST; THAT I WAS, THAT I AM, TRULY A UNIQUE AND INSANE-LY PSYCHO THAT MY BODY INVENTED UNBEARABLE PAIN! I DON’T KNOW WHETHER TO BE HAPPY OR SORROWFUL, YET I AM BOTH AND THE WHOLE GAMETT IN BETWEEN. LOVE TO YOU ALL
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