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arkady and I may or may not make the Dev this evening as redcountess is having a hideous fibro day. Boo to fibro!
This morning I got up at the crack of arse to meet my stuff at the self-storage place. Amazing how small half a ton of records is:
Culture by the crateload.
I got it onto the pump truck (lever it up by the handle, just like in a cartoon) and lugged it off to our shiny new storage space:
Home sweet home.
Home to a string of pimp calls, including arranging an interview for nine tomorrow morning and a likely interview for Thursday or Friday. Then out to the Albatross to pack more stuff in boxes and make a deal with Arkady's landlord for departure and cleaning, considering we have quite enough room in the storage unit for a flatload of stuff.
More Australian pics: Gothbar June 2001 has had a pile of pics added. Perhaps YOU'RE in there! The front gallery page now lists latest albums at the top. No, no RSS as yet.
Jeez I'm buggered. Back bloody hates me too. Where's the beer?
Update 8:55pm: Leaving for Dev now!
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(no subject)
Date: 2006-05-30 08:34 pm (UTC)Since I got a new doctor, I still have those, but not nearly as often, and in between I can do things like take a three mile ride, wash the van, and mow the lawn all in one day without being dead for a week. Want the regimine she's put me on to run it past your doc? I know how annoying it is to constantly get advice on what you 'ought to' do, and how tiring it is to try things again and again and have them do no f'ing good, so normally I wouldn't say anything, but... well, seriously, this new stuff has been a miracle for me. I've done more in th past month than I've managed in an entire _year_ recently, and felt better doing it. It's damned near like being cured, and I thought I'd _never_ be able to say that.
(no subject)
Date: 2006-06-01 01:31 am (UTC)My current regimen: Lyrica/Skelaxin/Celebrex/Hydroxyzine (for idiopathic urticaria, bless my immune system)/Lunesta (for the inevitable fibro sleep problems). The Lyrica (pregabalin) is an absolute *miracle*, it's a new medication -- it works far better than Neurontin or Bextra or any of the other fibro/pain meds I've been on. I've had much more energy and alertness since I started taking it a few months ago. Highly recommended to anyone with fibro that they mention it to their doctors.
Glad to hear that you're doing so well on your new regimen!
**hugs** and **hot toddies** to
-- A <3<3
(no subject)
Date: 2006-06-01 06:21 pm (UTC)Lyrica is probably the best of my new meds. It's amazing stuff, it really is. I think it works so great because it's a neurological analgesic, rather than an anti-inflammatory. It makes for _wonderful_ sleep, in my case.
Sleeping pills leave me dead-groggy for about 24 hours (sonata for only 12, though I haven't tried Lunestra), so I don't take them unless I utterly _have_ to. I take a very low dose of melatonin instead, about 0.5 mg. Sometimes I adjust it up or down, depending on how much sunlight I've been getting, but never more than 0.75. Low doses of melatonin, in studies (and by personal experince, for me) have been shown to work better than high doses, and have less chance of side-effects. I've found that if I get too high a dose, I get really bad nightmares, feel really drugged out the next morning, _and_ it stops working.
I did take Vioxx for severe muscle cramps (walk across the floor, leg cramps, *fall and writhe*) but when they took it off the market, I was screwed because celebrex raises my bloodpressure really badly. Normally it's 112/75... it shot up to 190/89 on celebrex. So I looked around for an herbal alternative, and the closest I could come was Devil's Claw root. It helps. I take 3-6 400mg capsules a day, depending on how I'm doing. If you try it, keep in mind it's a diuretic, and drink a bit more water.
My primary pain med was switched from methadone (which was always a bit scary for me) to a duragesic patch. It seems to work as well, but I did have three weeks of being very, very sleepy before I adjusted to it, and getting the damned things to stay on when you're allergic to the adhesive on most bandages and surgical tapes is a pain. I've ordered a box of teguderms though, that should eliminate that problem. :) Best thing about the patch: _no_ ups and downs. No waiting two hours, hurting so bad you want to cry, for your next pain pill to kick in. Takes about 24 hours to build up to full strength the first time, though. Got ye olde Norco for breakthrough pain, but honestly don't think it does anything anymore.
I also take Calcium and D3 supplements, as well as magnesium. And B12. Lots of B12, and it seems to make a difference. But I think maybe the biggest thing is the thyroid supplement she prescribed. There have been several studies recently indicating that people with 'low normal' thyroid ranges and a host of symptoms including fatigue, muscle pain, etc. are actually, despite nominally 'normal' ranges of thyroid in their blood, hypothyroid, for various reasons. Some of them just don't make proper use of what's there, others are 'tolerant' of their own hormone and need more of it than normal. So my new doctor's view is that you might as well try to get these folk up into the 'medium' range and see if they feel better. I'd tried doing this myself once with OTC raw thyroid, and it didn't really do anything, but the thyroid she prescribed (says 'armour thyroid 60mg, I take two)did. Lots. We're talking a serious energy boost, and coupled with the constant pain control for major stuff from the duragesic patch, and the disappearance of all the constant, annoying, little unexplainable pains that had no reason to exist thanks to the Lyrica, and a bit _more_ energy from the b12 shots, and getting _real_ sleep, also thanks to the Lyrica... well, it was _nice_!
For a muscle relaxant, I take one tizanidine (zanaflex) at night, but combined with the patch, the sedative effect is just a bit too strong, so I'm asking her for something less sedating, like flexeril, when I see her tomorrow.
So... one of the major things you're already got going for you. My doc says, if need be, Lyrica can be increased up to 300mg a day. I'm at 125mg right now, and it seems to be doing pretty good.
_Really_ long... con't in next post.
(no subject)
Date: 2006-06-01 06:22 pm (UTC)But I didn't see any pain control in your regime, except for the Lyrica. Is that by choice, or will the doctor not prescribe it? I can say from experience that constant pain, even if the pain itself isn't disabling, can be a crippling illness. It wears you out, affects your memory, your energy, your immune system, and everything else. You honestly don't know how big a difference it makes not to hurt until it happens. In my case, I never really realize just how bad I was hurting until it stops, too. IMO, one of the most important things about treating fibro is to get the pain under control, because until you do that it remains a huge stressor on the system, and as fibro pain is increased by stress, you end up with a horrible feedback loop sorta thing going on. If you're afraid of narcotics, or have a bad reaction to them, or have a doc who just won't prescribe them and no other option, then you might try Ultram (tramadol). I took that as my _only_ pain med for six years. It's non-narcotic, and despite what some idiots will say, non-addictive according to every actual study that's been done on it. It can produce a mild euphoric effect... though I always found it to be more of a "Oh god I'm not hurting YAY!" thing than anything else... and acts sometimes as a very mild anti-depressant. But _mainly_ it's a really good, non-narcotic, general analgesic. _Not_ a stupid, useless anti-inflammatory. They're also cheap, now that there's a generic, and OTC in some countries. They also come with tylenol as 'ultracett'... ultracett is useless. Doesn't work worth a damn. Ultram worked really well for me for five years, then I finally became tolerant (or my pain levels increased, not sure which one), and it just didn't cut it anymore. From what I've read, it works for about 25% of fibro patients, and when it works, it works _well_. When it doesn't, it doesn't do anything, and I've never seen horrible side effects listed from it. Worst I've seen is 'it made me itch all over so I stopped taking it', which is possible with any med.
Other than that... high doses of B12, enough D3 that your body can process calcium (or some natural, unfiltered sunlight, same thing :) ) melatonin as a gentler alternative to sleeping pills, and... I'd honestly recommend anyone who's thyroid levels were low to normal trying a couple of months (takes a while to build up, but I noticed a difference within 2 weeks) on a prescribed supplement, just because there's such a huge correlation between fibro and hypothyroid, and unless you're near hyperthyroid to start with, it's not going to _hurt_ anything.
A good doctor who listens to you, and who believes quality of life is important, and who's willing to learn and be flexible in your treatment is the best thing you could find.
Good luck!
(no subject)
Date: 2006-05-30 11:02 pm (UTC)(no subject)
Date: 2006-05-30 11:02 pm (UTC)(no subject)
Date: 2006-05-31 12:14 am (UTC)(WHY oh WHY didn't I meet you in 2001! AARGH!)
(no subject)
Date: 2006-05-31 01:06 am (UTC)But as for not meeting me until you were over there, and I was on holiday, better late than never my dear one. And I'll be coming back to London.... did you ever end up getting those photos of me you took in London developed?
(BTW, it's my birthday on June the 10th ;-) Pity we don't have Skype! It'd be nice to hear your voice!)
(no subject)
Date: 2006-05-31 06:53 am (UTC)(no subject)
Date: 2006-05-31 06:53 am (UTC)(no subject)
Date: 2006-05-31 01:01 am (UTC)(no subject)
Date: 2006-05-31 08:21 am (UTC)(no subject)
Date: 2006-05-31 11:44 am (UTC)(no subject)
Date: 2006-05-31 12:28 pm (UTC)(no subject)
Date: 2006-05-31 12:30 pm (UTC)