LindsayThursday night, after my neurologist appointment, I started taking Gabapentin for the neuropathy. If you have followed this blog long enough, you know I overthink the crap out of new meds before I actually take them. Like, weeks of researching and asking other chronically ill friends and scanning local obituaries to make sure that I will tolerate one little pill.
But not this time. After not sleeping well and lying in pain for a week and a half, I returned from the pharmacy on Thursday, ate dinner, and popped a little white pill. At that point I just wanted to sleep for an hour straight, and if the Gabapentin was going to kill me, at least I’d go down in a blaze of glory.
A sleeping blaze of glory.
I make it sound all badass, but my medication anxiety did rear its ugly head, and I only started with 100mg the first night for the neuropathy. It helped me sleep a little better, so the next night I bumped it up to 200mg, and have continued at that dosage since. It causes extreme drowsiness, so my doctor advised against taking it during the day, but ideally he would like me at 3-400mg per night.
For the first couple of nights, I actually started getting some decent sleep. But the pain wasn’t much better. For the past few weeks, the pain was in my feet and the palms of my hands. By my appointment on Thursday, it was up in one ankle. By the next day, it was up to the knees. Each day it has progressed a little more, and has now spread all the way up to my face and ears. It’s everywhere.
And I mean EVERYWHERE. Including my groin. Which would be awesome, if it was the tingly sensation that had spread. But it’s not. Of course it’s not. Because my life is devoid of groin-tingling occurrences. No, friends, it’s the dreaded burning sensation that has now spread everywhere, including to the promised land, the holy grail – my hoo hoo. I literally have burning loins.
I’m super surprised that the neuropathy is spreading like wildfire. I’m no longer sleeping well, because it hurts to have anything touch anywhere on my body, even clothes. I realized this morning that even the car air conditioning hurts when it blows on my arm.
I talked to my boss and will be working from home indefinitely. I’m grateful that’s an option, and will look forward to more time with this handsome fella:
I was supposed to travel back to my hometown this past weekend to take my mom to the theater. As you probably know, she has a degenerative brain disease and won’t be around forever. Everytime I see her, I wonder if it will be the last time. Disappointing her has implications that may reach farther than whatever time she has left. And, like a true loin burner, I got cocky and bought the non-refundable plane ticket since I hadn’t missed a trip to see her in over a year-and-a-half, and had to eat the $350 plane ticket.
I’m starting to wonder if the Gabapentin is partially to blame. The pain didn’t start spreading fast until I started the Gabapentin. I feel best in the afternoon, which is about when the previous night’s dose would be wearing off. My neurologist said to try a night without it, so keep your fingers crossed that I’m not a smoldering, albeit med-free, mess tonight. Like a burning bush.
And that, my friends, is the only “4-year and tens of thousands of dollars” Catholic high school education reference I have for you. A burning bush.
All I really want right now is a big hug, and for this to be over, but it hurts too much to get one and I think I have a ways to go yet.
And, while we’re wishing for things, tingling fire-free loins.
“There is a crack in everything.
That’s how the light gets in.”
― Leonard Cohen
Smell ya later.
– Linds
Oh, dear. I could no be any sorrier. Sending a long-distance, not touching, virtual hug and my wish that you get a bit of sleep.
Thank you!
You know we’re friends, right, and I *really* feel for your pain but I have to tell you I laughed through this entire post. You are freakin’ hilarious 😀
As someone who has had tingling neuropathy in her………..er, how do I say this delicately…………OK, I can’t…………I’m just gonna have to say it………clitoris, it sounds like fun but as you and I now know it absolutely is not. Nope. Not in any way, shape or form. There’s a reason I haven’t had sex in a decade.
On a serious note, well done you on trying a new drug – I know how scary that is! I’m so sorry it hasn’t been the miracle we were all hoping for though – let us know how you get on without it x
I left a comment with a word in describing a woman’s anatomy – you may need to check your spam folder as it hasn’t appeared LOL! x
Lol. You have been commenting on my blog for years, and only NOW WordPress thinks your comment is spam? It saw the word “clitoris” and thought, this dirty bird is trying to post porn on this wholesome, family-friendly site.
The wholesome, family-friendly site is mine, by the way. In case it wasn’t obvious from the discussion on burning loins. 🙂
Yikes! This sounds…awful.
Pic of Fletch doesn’t show up sadly, I just see a grey circle with a line through it 🙁
I’m so sorry you’ve had to miss out seeing your mum. That’s heartbreaking. And the cost is just the last kick in the nuts.
“Because my life is devoid of groin-tingling occurrences.” – I shouldn’t laugh but I did! My life is also devoid of such occurrences. Wouldn’t it be grand if meds had that as a side-effect though? 😉
I’m glad working from home for the foreseeable future is an option, that’s really reassuring to hear and I’m sure that takes one weight off your mind.
It certainly seems coincidental that pain has spread so far, so fast after starting this. I’ve not tried Gabapentin, I declined when it was suggested a few months ago because I stupidly thought ‘nah I don’t want to try another one I HAVE to take every day, I want one where it’s my choice’. Could be worth trying but it affects everyone differently. This though? This is pretty damn extreme. I really do hope a day or two off it can ease the burning and then you’ll have your answer.
Biiiiiiig hug your way. A gentle one. Don’t want the burning bush to spread!
Fingers are crossed for you, Linds. ♥
Caz xxxx
Thanks for your comment, Caz! It would be wonderful if meds had groin tingles as a side effect! Why aren’t we ever that lucky? Instead we end up with nausea or migraines or weird skin rashes.
I’m with you on meds you have to take every day. I HATE the idea of having to take something everyday for the rest of my life. Not only is it depressing, but I imagine that can’t be good for our livers. I hope one day there are other options.
Since you declined the gabapentin, did you find something else that helped?
And thanks for letting me know about the Fletcher pic. It always shows up normally on my computer, so I never know. Hopefully it is fixed now.
Aww yes I can see gorgeous Fletcher now 🙂
I feel the same with having to take something every day, forever. Forever is a long time!
Nothing I’ve found particularly helps. Tramadol does a little for some pain, but doesn’t touch other types of pain. Sumatriptan works for my migraines though, and for that I’m grateful. Just wish there was one thing to cover all types of body pain, from nerves to joints and in every area.. but alas, doesn’t seem to work that way! xx
Well, that sucks. Hope you get some relief soon.
Im sorry to hear about your neuropathy. I do not live with chronic neuropathy but I have my issues with back problems and tingling and twitching from time to time. I can’t imagine having to live with it on a daily basis. I so relate to the medication anxiety as well. Anything stronger than Ibuprofen and I will become hyper focused on potential side effects and be sure I am the 1 in 10000000 that is going to die from the drug. Best of luck to you on your journey and I wish you well.
Thank you! I’m the same – I always prepare to get whatever side effects are listed for a new medication. Most of the time it’s not worth taking any meds. Sorry to hear about your back problems!
Oh no. 🙁 Hoping something has helped by now. Sending you gentle, from a distance, hugs. I have IC and can relate to some of the pain you referring to, it’s very, very uncomfortable to say the least. Isn’t it weird how certain pains we can tolerate better than others? The others just make you want to crawl out of your skin. Or is that just me? Well, at least you have a cuddle buddy to keep you smiling. 🌸
I’m the same! For some reason, the burning pain is particularly frustrating for me, more so than other types of pain I deal with on a regular basis. Perhaps it’s because it’s almost impossible to have it so my feet aren’t touching anything, whether it’s shoes, the floor, the bed, etc.
My cuddle buddy is the BEST. Don’t know what I would do without him 🙂