I hate relying on medications, but my life seems to revolve around them these days, well, for the past 15 years, really. Without meds I’m pretty useless, and in excruciating pain besides.
In any case, I’m not entirely sure if I’ve posted about the med situation on my blog or not, so I’ll give a quick recap (lol, it turned into a book of a post, sorry). I’ve been so out of sorts I don’t even have a good idea of time frames… so I’m not even going to try.
A few months back I suddenly developed an allergy to the muscle relaxant I’ve been taking for at least 15 years. I had upped the dose a few weeks before that, so I’m guessing I hit some sort of threshold and my body just said “no more”. It took several weeks to pin down what exactly I was having a reaction to, though, since I hadn’t really changed much and no one believed it could really be a med I’d been on for that long.
Panic ensued, because I feel completely dependent on meds at this point, and I was already in danger of losing the NSAID (my heart had been acting up) which keeps the entrapments in my arms down enough that I can use my hands, and I’ve been having trouble with the anti-convulsant I rely on for many of the nerve issues, because it’s caused some un-diagnosable problem with my hydration levels (that’s a whole other story). I had already been through every muscle relaxant several neurologists had thought to try, and a call to my current neurologist told me, simply and matter-of-factly, that I was completely out of options.
So I spent a few weeks completely panicking (I’m not proud), and desperately trying to find a way to get the allergic reaction under control without having to abandon the muscle relaxant completely. I had gotten a new NSAID perscription just before this all started, but I was afraid to switch for fear of complicating things… so I put that off.
My neurologist wanted nothing to do with sorting out the allergic reaction, even though it was clearly because of meds he’d prescribed (though he wasn’t willing to accept that fact). So I had to go to my GP (and my GP had recently moved, so I had to go to whoever was randomly available at her old office)… the various nurse practitioners there couldn’t agree on treatment approach and were arguing with each other. At some point they had me cut back to half dosage on the muscle relaxant and gave me an Rx for steroids to try to break the reaction.
I was also seeing a new specialist that week about the hydration issues, and ended up in his office, for the first time, itching like crazy, begging his people to find me an ice pack to quench the burning fire in my face, caused by the steroids they’d put me on, and not at all patient enough to deal with his arrogance. I still haven’t figured out why my completely reasonable indignation at being straight-up called a liar — presumably because I couldn’t remember precise blood pressure readings from a couple of random doctor visits months back, of all things — caused HIM to feel offended. But, given that he is good friends with my neurologist, that only served to make the muscle relaxant situation even more difficult to deal with….
My normally polite, reasonable, and helpful neurologist turned into a pompous jerk, and when my GP insisted that I follow up with him, because he was the prescribing physician for the muscle relaxant and my other meds, and they didn’t want to mess with what a neurologist was prescribing, he had the gall to tell me that he “wished he could be a gp, but he just wasn’t”.
In any case, at some point one of the gp people found a muscle relaxant I’d never tried before and decided to try to switch me to it. At first, it seemed like it might be working. My arms were achy, but they tended to be achy anyway. Whenever the dose wore off it felt like a giant was trying to tear me limb from limb, every single joint hurt like it was being pulled apart! But, if I could get the dosage right and learn to take it on time that wouldn’t be a huge issue, right? And I was out of options, this was the only muscle relaxant I hadn’t taken yet, so I tried and tried and tried to find a way to remember the doses on time, but I am really BAD at taking doses on time, and this one needed to be taken 4 times a day. I don’t have anything with 4 alarms, and I don’t have money to buy anything.
I was panicking more and more this whole time, btw. If I forget my muscle relaxant for more than a couple of doses I wake up with pulled muscles. Going without one is not an option anymore. I saw this med, as bad as it was, as the only lifeline left. So I kept trying to force it to work, when hindsight tells me there’s no way it would have worked. The aching in my arms was getting worse, and my hands were starting to atrophy. But the biggest problem was one I didn’t even realize was happening, and that was that the med itself was causing massive depression and anxiety. I didn’t realize it because I tend toward depression anyway, and the situation was so stressful it seemed warranted.
I finally made the connection shortly after a call with my neurologist, in which I desperately pleaded for some advice, and he was a total arrogant jerk (this is not typical of my interactions with him for the several years previous, so I assume it has something to do with having recently ‘heard about me’ from his idiotic endocrinologist friend). The fact that I started bawling at one point should have tipped him off to the problem but he was too pompous to pay enough attention to realize what was happening. Thankfully, with the help of my best friend, we put two and two together not long after that and made the connection. I was devastated but knew I couldn’t keep going on that med, so tried going back to the old one, on a low dose.
Cue allergic reaction all over again, but with the arm pain back to a reasonable level and the giant-is-trying-to-rip-me-apart pain gone, and the black cloud of chemically induced complete and utter dispair lifted, my ability to reason started to return, and things didn’t look as scary as they had. At this point I was certain the allergic reaction was caused by the muscle relaxant, so I decided to go ahead and try out the new NSAID I’d been prescribed. Much to my surprise, it is awesome!! I have recognized no side-effects, it’s 24 hours so I only have to remember to take it once (and my right arm gives me a loud and clear reminder to take it if it wears off). All of the angina I was having with the high dose ibuprofen has disappeared, the TMJ pain in my jaw all but disappeared, and my arms are more useful than they’ve been since the entrapment started back in 2005.
Fred helped me research muscle relaxants again, and when I finally got in to see the neurologist I took a list of 4 that I didn’t remember having tried before. He ruled out 2 immediately… one was dangerous with my neuropathy and the other was one he refuses to prescribe to anyone, and I didn’t want to have anything to do with anyway. The third he could only find as an injection and he didn’t want to mess with it, and the fourth was one he’d never prescribed before. We decided to try it.
(He took the time at this appointment, now that I was no longer suffering from severe med-induced depression, as I had been on our previous phone call, to tell me that he was trained in dealing with depression, that I had seemed depressed recently, and if I ever needed someone to talk to I should come to him. I am very proud of my ability to hold my temper at that point… since I had tried to reach out to him for help when I had been in that state, and he obviously was the last person I should have tried to talk to, given the arrogant and pompous way he had responded to me in my distress.)
So I started the new med. It didn’t “feel” like it was doing a very good job. My muscles still felt rather tense, but they weren’t cramping all the time or pulling in my sleep, so that was good enough for me to try it for a while. The only side effect I noticed immediately is that I was hungry. No, starving. All. the. time.
Despite my size, I don’t usually eat much. I just have a really sucky metabolism. I found a while back that if I don’t eat meals, and just snack a little at a time, it helps my metabolism enough to lose a little weight, so I have been in the habit of just eating healthy snacks for a while now, and not many full meals. But this new muscle relaxant demands meals. Huge meals. And snacks. I was afraid I’d gain a lot of weight but after a couple of months I seem to be holding at about 5 lbs over where I was, so apparently it’s kicking up my metabolism even as it demands more food… doesn’t help the food budget, unfortunately.
But I can live with hunger. As annoying as it is to be hungry most of the time I’d much rather that then the alternative. I also found recently that there was supposed to have been a notice on the med instructions that you’re *supposed* to take it with a full meal, because it has as much as a 70% higher absorption rate when taken on a full stomach. So I’ve started experimenting with always taking it with a meal and it now feels like it’s doing a better job at the actual muscle relaxing. I was taking a very small dose of the old muscle relaxant every couple of weeks to try to force my muscles to relax when they got too tense, but I haven’t had to do that now in a little while.
I’ve been on the med a while now, and it has a few other ‘side effects’ that I’m starting to realize. I’m not sure whether these are results of the med, or results of being off of the old muscle relaxant… and I’m trying to belay getting excited because I haven’t been on it long enough to know if these things are permanent or not (since my condition tends to wax and wane and relapse, and I could just be having a really good couple of months)… but here’s what I’ve been seeing…
I can wake up like a normal person. No startling or shaking or whimpering or crying or screaming most days. No freaking out my little summer guests when they try to wake me up in the morning. In fact, several of the kids mentioned the difference this year compared to last year. Also? I wake up after about 8 hours, and most days I can stay up for the whole day. I may sleep a day or two here and there, but I’m not averaging 10-12 hours a night these days, and I feel more awake most of the time.
My muscles are getting stronger. I can feel my arms returning to normal. Not just normal for me, but strong, like they used to be before the entrapments started. They still shut down on me if I use them much, but the atrophy that had started on the bad med is completely gone and they’ve gained strength beyond where they were before that. My calves are getting stronger as well. I expected that, as they always go into hypertrophy when I don’t have a proper muscle relaxant, but this doesn’t just feel like hypertrophy, they feel like they’re responding to my nerves better, and my footing and balance feels stronger. This, of course, could just be fleeting or caused by a good few months with my neuropathy, I don’t know if it has much if anything to do with the new meds, but I’ll take it anyway.
I bounce-back faster. This one is huge, and I think it’s definitely a response to the med change. My neuropathy has always had a pattern… I use a muscle too much, my nerves go on strike and shut down on me. They’ll get really sore and the muscle will start shaking and eventually I just won’t be able to use that muscle anymore, or I’ll have very limited ability to make it tense and hold. I reach this point suddenly, so I usually don’t know I’m overdoing it until it’s too late. When this happens I have no option but to stop whatever it was I was trying to do. Usually for the rest of the day that muscle, or set of muscles, is useless, the next day it’ll be sore but usable, and the day after that it will be completely useless again, depending on how badly I overdid it that may last just a day or several more days. I’ve lived with this pattern since I was about 10.
But that pattern is gone. The past few times I’ve overdone it, my nerve has shut down like normal, all the same signs, etc. But in an hour or two, maybe a little longer if I really overdid it, it’s back to being strong again. The next day it’s fine. The day after that it may be really sore, but it’s been usable. I’m almost in shock over this. It’s great, but I don’t know what to think. Is this a new pattern?! Can I rely on this? If so, my disability just lessened significantly. I feel like I’m waiting on the other shoe to drop, to find out this was just a fluke, but it’s been a while now, and the new pattern seems consistent so far. I’m sure there will be limits on it, I imagine that at some point in overdoing it I’ll push too far and break over to the old pattern, but for now I’m really excited.
There are two bad things I’m dealing with right now besides the hunger. The first one I’m pretty sure is caused by the new muscle relaxant, and that is headaches. Lots and lots of headaches. And migraines. I’m hoping there’s a pattern that will let me do something to avoid them, but I haven’t found it yet. I’ve just been eating Tylenol a lot more regularly than I’ve ever had to in the past.
The other one, and I’m not entirely sure it’s related to the meds, as there was some evidence of it before I switched, but it seems like the new meds have exacerbated it greatly… when I get tired, my attentive memory all but disappears. I can drive safely, but I become a total airhead and forget how to get where I’m going. I lose the ability to count because every little distraction makes me forget what number I was on. I can’t remember names, I can’t keep my focus on anything, etc. It’s very disturbing and a little confusing… I took an online IQ test while in the middle of one of these episodes and my IQ was only slightly lower than the last time I took that test, so I know it’s not affecting my mind as a whole, but it certainly affects my ability to function in day to day type stuff. I was pushing hard for a few weeks and I just kept getting stupider and stupider until I got the time to rest up. I’ll have to be more careful about planning rest time in the future, I guess.
In any case, the hydration issue isn’t cleared up, and probably never will be (short of Divine healing), but despite the issues, the current batch of meds seems to be a huge improvement of where I was before the allergic reaction started. I will do my best to remember this entire ordeal as an object lesson on patience… that God knows what he’s doing, and He can bring me through to a better place even when it seems like the bottom is falling out of everything.
