Tired Girls

General posts about my experiences with fibromyalgia and Hashimoto's disease.

Saturday, November 15, 2008

What I did on my summer vacation: tapering, withdrawal, and Reboxetine

This entry is long overdue, as I’ve been through a lot of pharmaceutical changes over the last few months.  It started when I was in a drug trial for Relistor, and the study doctor suggested I enter another trial she was running for a “new” fibromyalgia medication, Reboxetine.  Reboxetine isn’t new by international standards, but I think it’s had trouble getting being released in the United States because of some patent issues related to the drug Strattera, so it’s just now in stage 3 studies and aiming for FDA approval in 2009.  The drug is essentially a reformulated, extended-release form of Strattera, and it inhibits the reuptake of norepinephrine.  I figured the trial might be a good thing, because I’ve always done well on SNRI drugs like Effexor and Cymbalta, and I’ve also had decent response to FMS “brain fog” treatments, like Adderall.  The trial was going to provide tons of free blood work, free EKGs, free urinalysis, free meds, and some financial compensation as well, so I was happy to enroll.

The doctor running the study said that she’d seen huge improvements for many patients, and encouragingly, the improvements were showing up in a matter of days.  It all sounded great except for one thing: to enter the study I had to stop taking both my regular antidepressant, Cymbalta, and my main opioid pain medication, methadone (I was allowed to keep using the occasional “rescue opioid”, which in my case was oxycodone).  Tapering one drug after long-term use can be a slow and tedious process, but I had to taper two at the same time, and I had to taper fairly quickly (I had about a four week window, maximum, to clear both from my system).  Both had their downfalls—the Cymbalta came in a time-release capsule so I couldn’t break it down into smaller doses (and I only had 60 and 30 mg pills in the house), and methadone is notoriously difficult to taper because of its long half-life.  At least it came in pill form, so I could break it down into smaller segments as needed. 

I went with the methadone taper first; I was taking about 30 - 45mg per day, so my dose was pretty small compared to the folks who are on 300mg+.  I thought the taper would be easy, because I was still taking a bit of oxycodone, and I figured that my brain wouldn’t notice if I just swapped out one opioid for another.  Wrong, wrong, wrong!  The actual tapering down to a dose of just 2.5mg per day wasn’t terrible, but when I quit that final 2.5mg it only took about 24 hours for me to have some pretty nasty withdrawal symptoms.  Leg cramping/restless legs, anxiety, intestinal cramping/diarrhea, cold sweats… I was pretty much a textbook case, although I don’t think I had too much nausea.  I felt miserable, and if I hadn’t had a ton of Ativan and Xanax in the house I think I might have given up.  I had the withdrawal symptoms badly for about a week, the symptoms lessened more after two weeks, but it was about four weeks before I felt like I really had all the methadone out of my system.  Other than Ativan, the thing that kept me from giving up was just putting each day behind me… once I’d survived three days of leg cramping, for example, I didn’t want to backslide and have to endure it again.

To say that I was surprised by the problems I had with the methadone taper would be an understatement.  I’ve never had any sort of addiction issues, and always I’ve found that slow tapering of any medication is an easy way out of my physical dependency symptoms.  In short, all my drug tapers have been easy, if not sort of slow, so I was shocked to feel actual withdrawal symptoms despite my best efforts to avoid them.  Since stopping methadone my pain is not as well-regulated, but I’m not as fatigued, and I’m definitely not as constipated.  The latter issue was a big, scary deal with methadone, and while part of me misses my cheap pain relief, I don’t miss all the bowel problems.  I’ve got a month’s worth of methadone left, but I don’t ever plan to go back down that road after those unpleasant four weeks.

You can probably imagine how excited I was by the prospect of tapering Cymbalta after what I endured with methadone.  It was pretty easy to cut my dose from 60mg to 30mg (all I encountered was a headache), but I wasn’t sure where to go from 30mg because I didn’t have (and couldn’t afford to buy) the 20mg capsules.  So, I did the unthinkable, and ill-advised:  I broke the capsules opened, hoped the little time-release balls would average themselves out, and just tried to make my own half-doses.  I guess it worked okay, because this taper was pretty uneventful (except for the aforementioned headaches, which were remedied by Advil).  There’s a chance it might have been worse if I’d been cutting all neuro-modulators out of my life, but starting Reboxetine relatively soon after stopping all my Cymbalta may have helped my brain with the adjustment.  It was missing some serotonin, but otherwise the landscape was pretty familiar.

I’ve felt a sense of freedom since stopping methadone and Cymbalta, because Reboxetine isn’t supposed to have a discontinuation syndrome, so I’m no longer tied to my medication in the same way I was.  I guess I’m a bit tied to my small does of of oxycodone, but I’m comfortable with that drug and know from experience that I can taper it easily.  I lost a lot of weight in the process of stopping my meds, so it jump-started some dieting I needed to do (I’ve lost about 35 lbs. in the past year, but the most recent 15 lbs. has been since August).  I realized how fatiguing both methadone and Cymbalta were, but I also realized that Cymbalta helped to ease some of my chronic pain.  Overall, I think it was good to get perspective on how my medication made me feel, and I couldn’t do that until I no longer had the medication in my system.

I’ve been in the Reboxetine study for about seven weeks.  It’s a double-blind study with a placebo, but I know that I have neither a placebo nor the highest tested dosage… I’m probably around 4mg, or perhaps 6mg, on a possible scale of 2mg to 10mg.  There are good things and bad things about it, and I unfortunately have to say that it hasn’t been a miracle cure for my fibromyalgia, and I still feel pretty crummy most days.  However, it does seem to have decreased my overall pain level, and it definitely contributes to mental clarity (although the flip-side of that is that I’ve gone from wanting to sleep all day, to having trouble sleeping more than 6 hours).  It causes uncomfortable sweating and it sometimes feels agitating, yet it doesn’t cause things like heart palpitations or dizziness.  The one thing I wish it could do, and it can’t, is to raise my serotonin levels.  Reboxetine is successfully used to treat depression, and I’d hope it would treat mine as well as Cymbalta or Effexor did, but it’s unfortunately worsened my anxiety issues instead of improving them.  I’ve read that it can be combined with an SSRI if needed, and I’d love to try that, but I can’t until I’m out of this drug trial (and when I’m out of the trial, I won’t have access to the drug, so it’s a moot point).

For now I’m sticking with the Reboxetine study, but I don’t honestly know if I’ll last the entire 16 weeks, let alone decide to enter the continuation study (12 months).  My anxiety issues are troublesome, and I’ve found myself feeling nostalgic for Effexor or Cymbalta.  If either of those drugs were affordable for me I’d probably already be back on them, but they aren’t, so I’m just trying to hang in there in hopes that maybe the Reboxetine will work better the longer I take it.  If I had health insurance (or disposable income), my ideal medications would probably be Provigil and Effexor XR.  I’d also be on oxycontin or fentanyl patches instead of short-acting oxycodone.  For now I’m just trying to appreciate the things that Reboxetine is helping with, because there’s something kind of neat about waking up in the morning and actually feeling awake.

Posted by Leigh-Ann on 11/15 at 02:47 AM
Tired Girls • (0) Comments • Permalink

Wednesday, September 17, 2008

The FMS Round-Up

This blog has probably looked abandoned for many, many months, but it’s really just the blog of someone with FMS/CFS.  Sometimes we get tired!  I’d might as well start by letting you know what sort of meds I’m on at the moment:  20mg of Methadone every 8 hours, up to 40mg per day of oxycodone for breakthrough pain, 60mg of Cymbalta once a day, Ativan 1mg as needed for sleep, and Halcion .25mg as needed for sleep.  I also have both Provigil and Dexadrine available for brain fog, but rarely use either.  They’re both very expensive, and while Provigil works well, I worry about relying on it too much for work and then not being able to afford more of it.  I really think someone should put it through a clinical trial to see if it could be specifically labeled for FMS—it clears the mind without causing jitters, and I often find that being able to work enjoyably has a positive effect on how the rest of my body feels, too.

To someone not familiar with FMS, my list probably sounds like a lot of drugs.  I rarely use the breakthrough oxycodone, though, and often just don’t get the scripts filled.  And I’ve recently started to taper down my doses of both methadone and Cymbalta in anticipation of entering a clinical trial for a new anti-depressant-type product being specifically marketed for FMS, Reboxetine.  It’s already been approved in Canada, Europe, and Australia, but the FDA wants their own trials, go figure.  The trial starts next Monday and I’m supposed to be off all my meds so the doctor can set a proper baseline for my pain.  The tapering itself has been quite easy, and even though I’ve done it quickly, the only side-effects I’ve noticed have been a few low grade headaches and some mild jitters.  The worst part of tapering hasn’t been a side-effect at all, it’s been reality.  Without my medication I’m definitely in a lot of pain, and it’s not very nice.  If I end up with a placebo in the clinical trial (a 25% chance of that), I’ll be without pain medication or antidepressants for 19 weeks, which is risky.  I’d love to find a way to live my life without opioids, though, so if Reboxitine works as well as some say it does, it will end up making this temporary suffering worthwhile.  The trial also pays about $350 over the course of the study (not much compared to some other studies), but if I like the medication, I’ll get a year’s supply free at the end of the study.  Now that’s a great offer, with my Cymbalta costing about $200 per month.

So how ‘bout you?  Participated in any clinical trials lately, or had good results with any new meds?


Posted by Leigh-Ann on 09/17 at 08:49 PM
Tired Girls • (0) Comments • Permalink

Sunday, October 28, 2007

The CFS Diet

My fatigue was pretty awful the entire summer, and I eventually just gave in and let myself sleep 10 to 14 hours a day.  I didn’t get much accomplished, but I felt better if only because I wasn’t fighting my body over the sleep issue.  Much to my surprise, I stepped on the scale last week and I’d lost 15 pounds.  When you’re only awake few hours each day, you can only squeeze in about one meal!  It’s an incredible diet plan that I’ll be marketing to rich people who don’t need to work for a living.

Posted by Leigh-Ann on 10/28 at 06:26 AM
Tired Girls • (0) Comments • Permalink

Sunday, August 05, 2007

Newsflash:  CFS can make you too tired to blog

I’ve never been diagnosed specifically with CFS, but the way I’ve started to sleep for 20 hours a day, I’d have to think that the diagnosis is a possibility.  The extreme fatigue has been happening for the last two or three months, and it happens for a few days, then I get a bit of a break, and then it starts again.  I’d say that I sleep 20 hours a day at least three days a week—that’s pretty horrifying.  And it’s not just me, my partner is in the same boat.  We even wondered if we had carbon monoxide poisoning or something, but all our pets, even the tiniest birds, are perfectly healthy and lively, so the problem just lives in us.  For people who wonder what chronic fatigue feels like, it’s not just a sense of being dragged down or unenergetic.  It feels like being drugged, as if someone spiked your coffee with sleeping pills or cold medicine and you’d rather weep than be forced to keep your eyes open.  I have days where I go around and feed the pets in a rush because I can feel myself slowly collapsing, and I know I need to finish feeding before I can fall into bed.  Yesterday I went to bed at a reasonable time and I fell asleep normally and when I woke up, fourteen hours had passed.  I don’t even bother to fight it anymore, because there’s no remedy.  Provigil did a great job clearing normal FMS brain fog, but so far nothing can defeat CFS.  My doctor has offered me stimulants like dexadrine, but I worry I’d end up exhausted and jittery, and I can’t bear the idea of being any more of a disaster than I already am.

The worst part of the fatigue is the way it affects my work.  I love working, and I love my jobs, and I really fear losing them when I have two or three consecutive days of being incapacitated.  I hope the fatigue is a phase, and it will pass, maybe when the cooler weather arrives.  We’ve only used our swimming pool one time this year, because it leaves us so sleepy that we need a nap.  And if we’re napping, we can’t be working, and we need to work just about every waking hour because otherwise we’re sleeping.  I have no right to complain about my life, as I live with someone loving and kind, and I have a nice home, and I have food on the table and a family who loves me.  However, all that aside, parts of my life really suck right now.  When I started this blog, I didn’t realize that the “tired” part of the title would end up becoming such a prominent part of my life.

Posted by Leigh-Ann on 08/05 at 05:17 AM
Tired Girls • (8) Comments • Permalink

Sunday, May 20, 2007

Fentanyl patch observations

I had such high hopes for the fentanyl patch, but sadly, it hasn’t yet worked any miracles.  I do feel some decrease in pain, but it’s not nearly what I felt from 20 mg of oxycontin.  I don’t even think it works as well as 10 mg of oxycontin.  The patch is supposed to last for 72 hours, but it’s practically useless after 48 hours, and definitely dead after 60 hours.  After about ten days on the 25 mcg patch I tried two patches, to test the effects of 50 mcg, and it was much more effective for pain relief, but it really exacerbated symptoms of nausea, fatigue, and urinary retention.  I’d reach a point with oxycontin where I really had no side-effects to speak of, so it’s difficult to deal with a resurgence of them.  The most prominent side-effect I’ve noticed is reflux (GERD), and since I started the patches, I’ve been taking Zantac daily.  The experience has really made me appreciate how well my body tolerates oxycontin/oxycodone.

Sadly, I think I’ll just end up going back on oxycontin when my fentanyl supply is up.  I can’t stay on 25 mcg because I’m not getting enough pain relief, and if I move up to 50 mcg, it will literally double the cost, to about $250 per month.  I have no affordable break-through pain options with fentanyl, either.  Switching back to oxycontin, but increasing my dosage, will still cost about $210 per month, but I’ll be able to be more flexible about the dosage (i.e., I can take it either two or three times a day, depending on how I feel), and I’ll have inexpensive oxycodone available for break-through pain.  I also won’t have to deal with nausea, urinary retention, or GERD, which will save money on supplemental meds.

I’d hoped fentanyl would help give me my life a sense of normalcy, and that I’d perhaps be able to enjoy a day or two of continuous pain relief, without having the ups and downs of taking shorter-acting pills.  It really doesn’t do that.  Even if I didn’t have the nausea, GERD, etc., the patches still only last about 48 hours, so I’m faced with having an entire day of pain while I wait to change patches, or my costs increase substantially as I go through 15 patches per month instead of 10.  I just haven’t been at all happy with the results I’ve had, and I’ve noticed that I’ve been quite unproductive in this month of experiments, too.  I think it’s time to go back to what I know works, even if it’s not a perfect solution either.

Posted by Leigh-Ann on 05/20 at 12:16 AM
Tired Girls • (1) Comments • Permalink

Tuesday, March 06, 2007

The doctor brings up Provigil

Not much to say lately, just work, work, and work.  It’s “good stress”—I’m working two jobs from home that I absolutely love—but I’m now dealing with a new enemy.  Instead of just being generally tired and lacking “pep”, I now get along pretty well for three or four days, and then absolutely collapse from exhaustion for the next two.  Since I found pain relief I know I push myself harder, and I think the fatigue is my body’s reminder that I’m only masking my problems, not actually fixing them.  My exhaustion is pretty hard to miss, because I can literally fall asleep if I put my head down on the table after breakfast, or if I close my eyes while sitting at my desk. 

My pain relief isn’t absolute, by any means, but I can use my meds to build a “comfort window” of six to eight hours each day, and that’s when I’m productive.  Outside of that window, I’m too sore and brain-addled to do mental work, but I can cope with things like feeding the pets, making a simple dinner, or watching TV (such a challenge!).  Now that I’m having these major periods of overwhelming fatigue, I may need to add a serious “upper” to my med regime if I want to reclaim that lost time.  The doctor and I discussed it today, and decided we’d make a decision about trying something like Dexadrine or Provigil in two months.  I don’t know if anything like that will help.  I know Provigil kills my brain fog, dead, but it doesn’t necessarily help me stay awake when I just want to fall asleep.  Brain fog and fatigue are two different things.  I’ll keep an open mind, however, and try to settle into some good sleep patterns over the next two months to see if that helps.  I really push myself to the limits because I want to achieve so much.

Today was the first time I told the doctor I’d tried Provigil “illegally” by ordering it from the Internet.  He didn’t bat an eye, he just wanted to know if it worked, and then asked if I wanted him to write me a prescription for it.  Sadly, I couldn’t afford “Made in the USA” Provigil even if I had a legal prescription, so I’d probably end up ordering from Canada.  My meds continue to be so expensive… I think I spend between $400 - $600 per month just on my basics.

Posted by Leigh-Ann on 03/06 at 04:00 AM
Tired Girls • (1) Comments • Permalink

Monday, February 05, 2007

Spoon theory

I had a nice rant over on The Blogpound about people who don’t comprehend the enormity of living with FMS/CFS.  Then one of my regular visitors, Helena, sent me a link to a wonderful blog and an entry about ”spoon theory”.  It’s certainly appropriate and I identify with it completely!  I’ve added the blog, But You Don’t Look Sick, to my blogroll, and look forward to reading more of it.

Posted by Leigh-Ann on 02/05 at 07:09 PM
Tired Girls • (2) Comments • Permalink

Monday, January 15, 2007

Report from my last appointment

I saw the pain management doctor on Wednesday, and he prescribed 5mg of oxycodone for me to take as needed for break-through pain.  So far I’ve only taken it twice, both pills on the same day, but it’s nice to know I have it.  He wanted to prescribe Percocet, but I was hesitant to take the acetaminophen if I didn’t truly need it.  With the oxycodone, I can add-on something like ibuprofen if I feel it’s necessary, and I’m better able to keep track of what I’m taking.  The doctor also offered to increase my oxycontin to every 8 hours, but that seemed excessive, and I didn’t want to deal with an increase in side-effects.

Here’s my current FMS medication regimen:

1 x 10mg Oxycodone CR every 12 hours
2 x 20mg Cymbalta every 24 hours
1 x 50mg Vistaril for nausea and itching
1 x 1mg Ativan for sleep before bed
1 or 2 x 5mg Oxycodone as needed (not often)
..,plus my thyroid meds, and an acid-reducer a couple of times per week.  Oh, and Colace.  Lots and lots of Colace!

I’ve taken Provigil just once, and it doesn’t seem to be necessary if I’ve got my pain under control.  With the pain managed, I’m able to stay quite focused on work, and I feel relatively energetic.  At most, I can really work for about six hours straight, but I can slowly pick away at other projects when I’m not feeling very well.  I still have one day a week, at least, when I feel like hell and want to cry at the thought of climbing stairs, but at least I have some decent days in-between.  I’d say that in one week I have two good days, three so-so days, one kinda crummy day, and one super-crappy day.  Those aren’t official terminology smile I’ve got so many part-time freelance jobs that there’s always work to be done, but I can usually do a little something almost every day.  If I make sure I take both an Ativan and a pain pill before bed, it helps guarantee that I’ll feel slightly human when I wake up in the morning, although I still have trouble sleeping for more than seven hours.

I’m back at school via distance learning, taking veterinary technology.  I should have it all under control until the end of the second semester, when I have to do 200 or so hours of practical work in a clinic, and that will separate the fibromyalgia patients from the students.  That’s when I’ll really find out if I could work full-time at such a demanding job.  Even if I can’t work full-time, I’d have the option of working part-time after graduation, or even working at home doing writing as a “licensed professional”.  I’ve also been fantasizing about going to veterinary school at UC Davis… I’ve got lists of my prerequisites, and I’ve checked off what I’ve already got credits in.  I don’t think I could hack it because it would require moving and lots of money, but it’s fun to dream about.  I’m signing up for a distance learning physics class at the University of Minnesota to meet one of the prereqs I don’t think I have, and to add to my growing list of institutes of higher learning where I’ve earned at least three credit hours.  Some people collect Hummel figurines, I collect transcripts.

Posted by Leigh-Ann on 01/15 at 12:34 AM
Tired Girls • (0) Comments • Permalink

Tuesday, January 09, 2007

Back to the doctor (heigh ho)

I’m off to the physiatrist tomorrow—it will be my third appointment.  I’m unfortunately going to be forced to tell him that I’ve been feeling substantially worse since my last visit.  At first I was better, perhaps because I began to take my oxycondone every 12 hours, but for the past four weeks or so I’ve felt absolutely miserable.  I’ve had days where I can barely climb the stairs, days where I can’t concentrate and get no work done, and days when I just want to curl up into a ball and give in.  Today was one of the latter days, although I’m feeling improved after taking about 15mg of oxycodone plus 400mg of ibuprofen.  I hate to think that I might have to take that much medication on a regular basis, but my lower dose of pain meds isn’t cutting it.  Part of my problem is definitely stress-related, but it’s hard to not be stressed when you’re in pain.

Posted by Leigh-Ann on 01/09 at 07:29 PM
Tired Girls • (0) Comments • Permalink

Tuesday, January 02, 2007

Happy New Year

Happy New Year to all the tired girls, allergic girls, girls in pain, and everyone else in-between—may we all find comfort in the upcoming months!

On a totally unrelated note, I wanted to post a link to AGLOCO, a new “get paid to surf” program.  It’s in beta testing right now, but when available you’ll be able to earn money for a few hours of surfing the Internet through a propietary toolbar.  It’s not a lot of money, but if the link gets out and around in the chronic pain community, it could help us all earn a bit of extra cash to pay for exciting things like prescription medication.  I can’t promise it’s not a scam, and I always take these types of ventures with a grain of salt, but the company is run by reputable people who’ve been in the Internet business for a long time, so I’ll hope for their success.  Get paid to browse the Internet.

Posted by Leigh-Ann on 01/02 at 02:11 AM
Tired Girls • (0) Comments • Permalink

Friday, December 29, 2006

If I’m not posting…

...it’s just because I have nothing to say smile

Seriously, I feel like such a bore if I just moan and complain, although this is an FMS blog so I suppose that’s to be expected.  I have good days and bad days.  On my good days (for example, Dec. 23rd and 24th), I feel energetic and happy and pain-free.  On my bad days (every day since), I’m exhausted, feel like my limbs are too heavy to move, and my pain meds work just marginally.  I’ve had to start supplementing the oxycontin with ibuprofen to make it last longer, and to make it work better.  That’s a far cry from when I took OC a few years ago, and it eradicated all my pain completely.  Now I’m lucky to get a window of a few hours without pain (those are very welcomed!).  I’m sleeping very well at night, but after I exert myself, my recovery time is getting longer and longer.  I don’t know if it’s because I’m getting older, or because of the cold weather, or because of holiday stress, or because my illness is just getting worse.  I’d prefer it if isn’t the latter.

My unique FMS pain spot is in the soles of my feet—my heels and the balls of my feet ache like they’re bruised.  It’s not plantar fasciitis pain.  I don’t think I’ve ever had a moment without foot pain over the past year.

In any case, this is just a whiny, “yes, I’m still around” post.  I had a nice holiday, although life getting back to normal seems to be what my body likes best.

Posted by Leigh-Ann on 12/29 at 04:49 AM
Tired Girls • (0) Comments • Permalink

Thursday, November 02, 2006

Pain and productivity…

...are like oil and water.

My lack of posting is mostly a result of keeping busy, and not for a lack of things to say.  Flippy and I started to apply for freelance jobs back in early October, and suddenly we were swamped with assignments (and new things to learn).  I’m now doing some website design, some freelance “sales” stuff via the Internet, writing three or four blogs, and just about to start working for a mortgage broker (again, I’ll do that online).  It’s been fun and challenging, but I never cease to be amazed at how productivity can be totally suffocated by discomfort.

When I sit down to do work and I’m in pain, my mind wanders.  I have trouble focusing on tasks.  I tend to jump from one thing to another, and I’m easily distracted.  I feel exhausted, even if I’ve just woken up.  However, the second my pain meds kick in, I’m eager to work, enthused, alert, and I really enjoy what I’m doing.  For the last year or so I’ve thought that I wanted a new job and that I was tired of the Internet, but I think I’m just tired of hurting.

I’m really, really happy to have my oxycondone, and it’s totally changed my attitudes about work and life.  Unfortunately, it’s not working as well as it did when I first took it a few years ago.  On a positive note, it never makes me nauseous anymore.  On a negative note, I’m having some break-through pain and have “topped up” once or twice with an extra pill.  I truly don’t think it’s a tolerance issue, I just think my pain is worse than it was a few years ago.

These are issues I’ll bring up with my doctor when I see him again on the 21st.  I’ve read of FMS patients routinely taking 30mg or 40mg of oxycondone daily, and while I hate the thought of that much medication, I’m just not able to live a normal life without it.  At least I have options, which is more than what a lot of people have, and for that I’m very grateful!

Posted by Leigh-Ann on 11/02 at 10:12 PM
Tired Girls • (2) Comments • Permalink

Sunday, October 08, 2006

“All In My Head”, autographed

BookCloseouts.com is offered the hardcover version of Paula Kamen’s great book, All In My Head, for just $5.99.  As an extra bonus, the book is autographed by the author.  When I first it a couple of years ago, I paid about $20 for a non-autographed hardcover, so don’t miss this chance to get a signed copy for about a quarter of the price.  If you’re dealing with any chronic illness, Kamen’s chronicles of her “adventures” within the healthcare system are amusing, and even a bit inspiring.

Posted by Leigh-Ann on 10/08 at 08:07 PM
Tired Girls • (0) Comments • (0) Trackbacks • Permalink

Saturday, September 30, 2006

I’m in love

I’m in love, but Flippy says it’s okay… I’m just in love with my new doctor and Rehabilitation Associates of Nevada.  As I wrote in an earlier entry, in late August I finally decided to see a fibromyalgia specialist, in this case, a physiatrist.  I’d been given the referral to this clinic three years ago, but I declined to go because it was pretty expensive, and because I was feeling frustrated about my inability to find solutions to my health problems.  I’m glad I saved that referral and finally decided to follow up on it, because the appointment was definitely worth the $200 price of admission.

Superficial things first—the office is in a nice building attached to a hospital, and it’s in a nice part of town with great views.  The office was spacious and comfortable, and it was practically empty—they say they pride themselves on always being “on time”, and they seem to mean that.  The office staff were very friendly and laughed a lot, which made me feel at ease—it wasn’t like some offices where the staff are tired and overworked.  I sat in the waiting room for perhaps 10 minutes before I was called in for my appointment, and I was then put into another room, an exam room, with lots of artwork on the walls and comfortable furniture.  The place felt “cozy”, rather than harsh and sterile.  I doubt I waited more than 5 minutes for the doctor to come in, and he entered pushing a tray with a laptop on it—he took his own notes during the appointment (sorry, Georg—he’s going to put the medical transcriptionists out of business).

I’m not exaggerating about this part:  the doctor talked to me for one and a half hours.  Seriously.  He asked me all my medical history and prescription history and about other doctors I’d seen and about my various aches and pains, all while he sat and typed out notes.  When I tentatively mentioned that Oxycontin had worked for me, he nodded, and his only “opposition” to Oxycontin was to ask if I’d tried less expensive narcotics like Perocet and Lortab.  I told him they worked, but weren’t as convenient (because the pain ebbs and flows more), and he agreed that Oxycontin seemed perfect for me, as long as I didn’t mind the cost.  He asked about side-effects, and I told him Oxycontin made me a bit nauseous, so he prescribed hydroxyzine to combat the nausea.  Then he gave me a new Ativan prescription, as well.  With narcotics, I’m theoretically supposed to go into the office to get a new prescription every month (they don’t charge for it, but I have to go pick it up), but the doctor said he’d write my scrip for twice the dose I’d probably end up taking, so it would last me two months.

What I loved most of all was that the doctor trusted me, and spoke to me like I had a brain and was a responsible adult.  I don’t like narcotics, frankly—the side-effects bother me, and I don’t like the social stigma of taking them—but I really appreciated that this doctor knew they were a reasonable option for my condition, and didn’t treat me like I was going to abuse them.  In two months I have another appointment to reassess the situation (it will cost $75), but I feel like there’s a light at the end of the tunnel, here.  I may not find a “cure”, but I think I’ll be able to find a way to function somewhat normally again.

I wasn’t given any diet or exercise instructions, although I was offered a prescription for a special fibromyalgia pool exercise program (the program nearest our house is full, so I had to decline for now).  I thought I’d be told to start walking or exercising or something, but for now, the doctor would prefer I do nothing out of the ordinary which might make me feel worse.  If and when I have insurance, he said he can send me to physical therapy.  If and when Flippy and I start earning more money, I’ll be willing to pay for PT out-of-pocket, if need be.

Anyway, I feel pretty good today, mentally.  Physically, I’m just wiped out—the past week of night school (four hours each night), plus homework, plus other work, plus the doctor has left me in a state of collapse.  I woke up full of energy, but fell back into bed two hours later and have spent the day napping.  I started my Oxycontin last night (it helps me sleep free of pain, and this way I can sleep through any nausea), but the pharmacy won’t have the hydroxyzine in stock until Monday.

Oh, one quirky thing about the rehab office—they not only have a drug contract, they seem to enforce it.  There’s a note on the front desk saying that when you arrive for an appointment, you’ll be asked to roll two dice.  If they come up with a total of four or eight showing, you have to immediately go downstairs to the lab for a “random drug test”.  I know they have to protect themselves against drug abusers and drug seekers, but I’m going to be pretty annoyed at the lab fees, if and when I get hit with the test.

--------------------------------------

My current daily medication regimen:


40 mg Cymbalta (for sanity)
5 mcg Cytomel (for thyroid)
75 mcg Synthroid (for thyroid)
10 mg Oxycontin (for pain)
.5 mg Ativan (for sleep)
20 mg Prilosec (oxycodone gives me nasty GERD)
Posted by Leigh-Ann on 09/30 at 07:53 PM
Tired Girls • (6) Comments • (0) Trackbacks • Permalink

Monday, September 25, 2006

A job interview, and 60 lbs. of dog food

I had a working job interview to be a vet tech, and the three hour process was surprisingly physical.  It seems that everyone owns large dogs!  I restrained Samoyeds and Akitas and Collies and Rottweilers just in that three hour time span, as well as numerous cats, and one nippy Jack Russell terrier.  I helped lift a 65 lb. dog onto an operating table, and did lots of other bending and crouching.  Surprisingly, I finished the day feeling pretty good, and I didn’t even feel too poorly on Friday.  The biggest stress I felt was in my legs (crouching/kneeling is painful for me), but I felt much better than anticipated.  If I get offered the job, I don’t know if I’ll still feel good after a 12 hour shift, but my 3 hour trial bodes well.

The day after my job interview, we went to a trade show for pet retailers, where we were given piles and piles of samples as the show closed down.  We were offered far more than we could carry, but I was determined to fill every last bag I had with me to the brim with freebies.  This resulted in us having to carry literally 50 or 60 lbs. of food back to our car, which was about a half-mile walk away.  I didn’t want Flippy to carry too much because of her back problems, so I took the bulk of the load, spread across my shoulders and arms.  Wow, it was heavy!  By the time we were halfway to the car I could barely lift my legs, and when we finally got to the car, my legs were like jelly and my shoulders were on fire.  I took half a Lortab and imagined the worst, but when I woke up the next morning I still felt pretty good.  Sure, I had muscle pain in my shoulders, biceps, forearms, and thighs, but it was that elusive “good pain” that I haven’t felt in years.  It was very isolated, targeted pain which felt like overworked muscles, and not the familiar fibromyalgia ache.  It was sort of exhilarating smile I was moving pretty slowly on Sunday, but again, I felt pretty good considering the circumstances.

Is this why FMS patients are always being told to exercise?  If I can motivate myself to exercise to the point of really working a muscle, might that muscle repair in a normal way and help lower my overall pain?  How on earth could I find the energy to lift weights every day, without the dangling carrot of free dog food?!

Posted by Leigh-Ann on 09/25 at 12:01 PM
Tired Girls • (0) Comments • (0) Trackbacks • Permalink
Page 1 of 2 pages  1 2 >