Since we’ve hit the 6 month marker I feel like we don’t really need to count days anymore. Instead of counting towards something now this is just about me, and life with this annoying condition. So if you notice the missing “Day…..” I didn’t forget it, I just don’t feel like it’s necessary anymore.
Okay, moving on….
In my Changes and Stuff post I mentioned I was getting ready to start 2 new meds for pain relief. I started on a Tricyclic Anti-Depressant and some Lidocaine patches called LidoDERM. Both of these are pretty effective for people with nueropathic pain (think Shingles, Diabetes, Fibro, stuff like that). Whether or not they would work for me, however, was questionable. When you are desperate for some semblance of a life off of your couch you just have to keep trying. For those of you counting with me, these are medications number 17 and 18.
The first thing I filled was the Amitriptyline (generic for Elavil) and started on 10mg a day at bedtime. The first night I noticed about an hour in that I felt like I weighed a bazillion pounds. It felt like I was walking through quick sand whenever I would try to move. About 2 hours into my first dose I had a “crushing” headache. It was as if someone was trying to pop my eyes out of my head like a zit. That night I slept like crap, constantly scratching my arms in a half sleep/half zombie mode.
The next day I felt groggy, cranky and ironically enough it was the worst pain day of my life. If someone would have made me rate it on the 1-10 scale I would have said 11. It. was. Brutal. That night I took my dose an hour earlier to try and have less groggy-ness the next day. The second night was just as the night before; nasty headache and quicksand, along with zombie like scratching (this time it was my face) mixed in with some really vivid (and weiiiiiirrrd) dreams. My second day on the med was space cadet city, I couldn’t focus to save my life- I even missed my exit on my way to work. That night’s dose was the same thing again, quick sand, headache, bad dreams and a little less scratching thanks to Benadryl before bed.
I had really hoped the weird side effects would get better, hoped that I would start to notice some pain relief after a few days to make the side effects worth it. No chance. Today is day five and I am a mess. I am constantly tripping over my own feet, I can’t focus on anything (driving is a no, no), I am hostile and cranky and want to crawl out of my own skin. My head is killing me and I swear I am trying to kill myself. So far today I have managed to drop a water bottle on my head, tripped myself twice at the mall, and almost fell over backwards while just standing in once spot. The best part? While doing my hair my hand just stopped working and I dropped my curling iron on my face and burned my eyelid and cheekbone.
I was not happy.
Add into that the constant panic attack just hanging out at the surface ready to run free (finally had to take a Xanax just to get back to “normal”) and my tongue’s refusal to put words in the right order. I am ready to break up with Amitriptyline.
This makes me really sad. My dream was that this med would work, I mean really work and I would start to feel like a normal person again. I mean, I knew it couldn’t be perfect. I knew there’d be some side effects and that I would still have some pelvic pain but any kind of relief has to be better than this. I was even ready for the idea that if the 10mg didn’t do anything I could titrate up to 15mg and so on until I either got relief or couldn’t tolerate the side effects. Sadly, based on the last 2 days of my La La Land residency this isn’t going to happen. I can’t bring myself to take it again tonight for fear I won’t make it to work tomorrow.
I was so hopeful that this would work, and 2 weeks from now when I want to go the Calvin Harris show with my friends I could. I would be able to go and dance with my husband and best friend and laugh and not have to worry if I was on my feet to long, or if I would make it until the night was over. I was so hopeful that when I take my kids to see the ocean for the first time in April that I would be able to enjoy it. That I could walk the beach with them and not have to sit down, or take more meds so that I could enjoy it with them. I was dreaming of 3 hours in a seat on the plane without needing ice packs and Tramadol just to get through the flight. My break up with my newest flame makes me feel like this all just slipped through my fingers….
I’d cry, but it has numbed away most of my emotions today…
While Amitriptyline and I have been seeing each other casually I have also been seeing the LidoDERM patch for topical pain relief on the side. -Remember, I told you I was a hussy ;)- The first time I used one was in the middle of a nasty flare (think back to day one of the Amitriptyline) and it didn’t do a dang thing.
The next day I put one on my lower back before I left for work and it took some of the edge off which was a nice surprise.That lower back pain is so intense that it is almost impossible to work around it. Usually it takes a very frozen ice pack, Ibuprofen and 2 Percocet to calm it down. It is always accompanied with a lot of hip and thigh pain so I was very thankful that the LidoDERM patch took the edge off while I waited for the other meds to get to work on my pain. A day later I was experiencing that burning/aching feeling deep in my pelvis so I threw on one of those patches to see what it would do. About 5 minutes later both of my inner thighs started to burn and tingle in a “pins and needles” kind of way. The directions say that’s bad, so I took it off and I haven’t used one since.
I have a whole box of these patches and the jury is still out, but I will keep trying them in different situations and see what happens. Based on the price of the box, and the efficacy thus far, I can’t see myself refilling the prescription when I run out.
Writing the Changes and Stuff post really opened my eyes to how much I have given up. How much less I go out and how much my pain is still really running my life, and to be completely honest here, it really upsets me. I understand that I can’t go out and be an Olympic athlete or anything, but I can’t sit on my butt and be a couch commando for the rest of my life either. It’s not reasonable to expect that I will avoid every activity that might increase my pain and result in needing an extra dose of pain meds here or there. If I live by this philosophy how will I ever leave my house? How will I take my kids to the zoo or travel to different countries? Heck, how will I go to the grocery store and do laundry!?!
There is just no good reason for me to be in so much pain all the time. I am not asking for miracles, or even a 2 out of 10 on the pain scale but a 4 or 5 out of 10 as a daily level would be nice. With my favorite season right around the corner and all these things I am longing to do, I feel suffocated by my lack of support when it comes to managing my pain. It’s frustrating to see so many other people getting back to their lives while I sit on my couch and pray that my pain will just…..disappear.
I know there are going to be down sides to every form of treatment I utilize. Side effects to every medication I take, concerns about what I will have to go through in order to relieve my pain. But when the alternative is living on my couch in my sweatpants for the rest of my life, can you blame me for wanting to try them anyway?