Sunday, August 29, 2010

Health update

Health update:
It's been a while since I've blogged about how things are going, so I figured I'd write an update, for those who are interested.

I stopped the Lyrica quite a while ago, maybe 5 days after I started taking it. It wasn't helping, at all, and the side effects were annoying. I'm now on MS Contin, which didn't help at 1 tablet a day, helped a little at 2 tablets a day, and one day I had unbelievable pain, I couldn't move, so I tried a third. And my pain just disappeared. I did feel a little disoriented/spacey, but anything is worth it if I'm pain free! I also slept very deeply for the first 3hrs that night. So I need to contact my doctor [consultant physician] again, (we're working out the right dose, increasing in the smallest increments possible as necessary) and let him know that 3 tablets a day, spread out from when I first get up until late evening is enough to kill pain.

Sleep hygeine/getting up at the same time each day:
I'm still getting up at 1pm each day, because my sleep pattern hasn't adjusted yet, and I've had to get up at different times the past week (9am, 11am, etc.) so I think my body is just really confused as to when it's meant to sleep! I'll move it back to 12.45pm or 12.30pm as soon as I've adjusted to the change. It's really difficult, because my meds that are supposed to keep me awake don't work well enough anymore. I've never taken them daily, because I've never had enough, but now I'm just so desperately in need of sleep that I could fall asleep if I lay down, even for a minute. So I can't lie down, unless my pain is really bad, enough that I can't sit up or move.

I doubt I'll ever be able to get up at 9am every day. I know I'll have to get up early some days for school in November and next year, but it's different; if you're getting up at 9am when you're at home, there is nothing to do. I'm too sick and sleepy/exhausted to study, which leaves watching tv or going on the internet. They're all nice things, but from 9am-11pm? No thanks. Even if you add in reading, writing and tidying my room, I'd be so tired that I'd need a nap. But I'm not allowed to nap. I think on weekends I should be allowed to sleep in, until midday at the latest, but eventually I'd hope to get up by 11am.

Weird. Why am I more awake some days than others?
I seem to be more awake and alert when I know I have to do something/be somewhere. For instance, yesterday I got up at 1pm, took my meds, made my bed, got dressed, etc. and was sleepy the whole day. Today, I had maths tutoring, and I got up at 12.45pm, was a little awake and alert before my meds, and am still quite awake now, after 9pm. It's the same with school, (except the 6.30am starts) I only struggle with breakfast, because I'm not hungry in the mornings, but if I don't eat a lot, I'll be starving in the middle of my first class. I am allowed to eat in class, but it's awkward... Like I'm drawing more attention to myself. So I eat a big breakfast (usually curry and rice, or spaghetti bolognese, or something filling) and then am so stressed by school that I can usually only manage a bit of rice or a sandwich with some water for the rest of the day. Then I get home, and am de-stressed, and immediately starving!

My pain has got worse; I read in the paper that it's been the wettest year since the drought began, and it's a colder, more bitter winter than last year. This explains my pain. But now my knees seize up, and my ankles hurt terribly, and I get awful rheumatism-like pain in my limbs. The joints are the worst. I really hate leaving the house now, because as soon as I do, it's instant pain. And the pain doesn't go away until I'm really warm and have taken enough painkillers. A lot of nights it keeps me awake. Thankfully we got an inverted heater/cooler installed in my room, and we got a grant to cover part of it, (as I can't regulate my body temperature) so now I can warm up my room and stay warmer. My new quilt is also super warm, and all of these things help with the pain. Heat packs are great, too.
Does anyone else get this sort of pain, or have tips to minimise or cope with it?

My sleep hasn't figured itself out yet. Some nights I sleep okay, other nights I'm awake until 6am, then wake hourly, not to mention when my younger brother gets up and gets ready for school. That's usually from 7.30am-8.40am. If I could sleep from 11pm, it'd be fine. But I can't, and I need more sleep than I ever have: 10-12hrs a night, just to minimise my pain and so that I'm not sleepy all day. I just hope my sleep will improve before my exams!

Well, that's about it! If there are any other things you'd like to know about, comment, and I'll respond. Thanks for reading! Alex. xoxo


  1. The only thing I find that helps my general achyness and it also seems to help my sleep is taking a bath every night before I go to bed with Epsom salts.

    You are right about "not having anything to get you out of bed" making you want to sleep more. I think it's part of depression. I had to take this semester off of school because of my Fibro and right now I can't even get to where I can work regularly (which I do from home). I still try to get up at a regular time every morning (usually around 10am) and go to bed at a regular time (Usually around 10pm). I try to be in the bath by 9pm at the latest. I find a regular routine helps me more than anything and when I get out of that regular routine I just feel a lot worse.

    My regular routine: Get up around 9am. Get online while I eat breakfast and take meds (usually about an hour or so). Then I get on the treadmill for about 20 minutes. Take shower, brush teeth, etc. From there what I do just depends on the day and what I need to get done. My hubby gets off work at 4 and we usually eat dinner together. I'm usually amazed at how fast the day goes while he's at work.

  2. Alex, my sleep has not been perfect since I got this horrible stuff, but it's better than ever because I'm really well now. I can relate to your description of pain and its many vagaries. What helps one day sometimes has no effect another. Keep lots of helpers handy like sock buddies that you can warm up in a microwave oven. Julie's idea about a warm bath is excellent. Sometimes nothing soothes like warm water -or- some regular movement therapy. HOWEVER... I would encourage you to try to get in as good a daily sleep/wake/cyle routine as you can. Getting up and going to bed at the same time each day will eventually help because your systems will fall into a regular pattern, re-learn what they are supposed to do and begin producing the right hormones that they should, etc. etc. Right now I blog, podcast & help people get well from these illnesses. If you're interested in talking more, shoot me an email, gal. I would love to help if I can! (((Hugs))), Cinda Crawford (former sufferer of CFS, Fibromyalgia, Lupus, Lyme, Arthritis, sleep dysfunction, thyroid imbalance and too much more to name!)

  3. Sorry- I forget to leave my email. Send to & I'll answer you back.

    Feel better now, you hear? CC

  4. @Julie: It's could be depression, my doctor thinks I might be depressed because of lack of sleep, but mostly it's that I need rest, and my body is telling me to rest all the time. I do function better when I have something to do with study scheduled, like maths tutoring.

    I have a routine, and have had one since I was told to follow "sleep hygeine" at 8. To be honest, my Mum had set a routine for me before then, anyhow! So I've always had one, it's just I've never been able to get up early.

    I do find heat helps - a hot shower, or a heatpack all ease my pain, and warm me up in winter. I'm always freezing to death! Lately my joints have been seizing up, so I hobble around the house like an old person. It's depressing to feel so old!

    @Cinda: It's the sleep routine I have problems with. If I go to bed at 11pm, I could stay awake until 8am, simply because my body thinks that it is daytime. As for the waking, when I do get some sleep, I wake so regularly, sometimes every 10mins!

    I keep to a routine, but 9am is too early for someone with Idiopathic Hypersomnolence, and meds that aren't strong enough. I can fall asleep even after I've taken double the amount of "wakefulness" meds. My body has refused to "re-learn" a normal sleep pattern for over a decade!

    Thanks. =) I'm seeing a sleep clinician tomorrow *groan* and I really don't want to hear about sleep hygeine. 11 years of it and no results. I just hope this sleep clinician has an idea that's new, and might actually work!!

    Alex. ^.^