FMS medications

Experiences with different prescription medications used to treat my fibromyalgia.

Sunday, October 28, 2007

Let’s try Methadone

I fibbed a little in my previous entry, where I said I lost 15 pounds by sleeping.  I think I actually lost 10 pounds through sleep, and another 5 courtesy of nausea.  Almost a year to the day that I started to take oxycodone products, I was hit with wicked nausea.  This is exactly what happened to me three years ago, when I was also taking oxycodone for FMS.  I had to stop taking it because I developed bad nausea after 12 months.  I don’t know what’s special about the one year point, but my body doesn’t like oxycodone over the long-term.  I could get a bit of nausea-relief from Ativan, but I didn’t want to start piling on the meds if I didn’t absolutely have to, and I especially didn’t need any more sleepiness in my day.  Oh, I forgot to mention that my 15mg of oxycodone every 4 hours wasn’t controlling my pain anymore, so I was facing an even bigger problem if my dose had to be increased.

With my doctor, I decided to switch to methadone for pain relief.  The great thing about methadone is that it lasts for up to 12 hours, and a full month’s prescription only costs about $12.  The bad thing about methadone is that there are a lot of horror stories about it, and it seems to be a drug that many people have a hard time weaning from.  Flippy had tried it earlier this year and had a really tough time adjusting to the side-effects, so I took it with a bit of trepidation, worrying I’d be hit with even more queasiness.

I’m thrilled to report that so far, my methadone experience has been wonderful.  My nausea is gone, thank goodness (although I don’t want to gain back the weight I lost!).  My pain level is really low, and I have consistent relief from pain, not the rollercoaster of relief I had with short-acting oxycodone.  The only negative thing I notice is that it makes me drowsy, but I seem to be getting better-quality sleep, so when I’m awake, I’m more productive.  I’ve felt more energetic and enthusiastic, even though it’s only been a week.

My tolerance to oxycodone developed rapidly, and I hope the same won’t happen with methadone.  I want to enjoy a few months of pain relief and a smaller waist and comfortable sleep before I sink back into the pain pit.  This year has been really bad for my FMS and CFS, and I’d love it if all that was over.

Posted by Leigh-Ann on 10/28 at 06:29 AM
FMS medications • (2) Comments • Permalink

Sunday, August 05, 2007

Yeah, I’ve still got FMS, too

I’ve still got FMS, and it’s either getting worse, or I’ve developed some sort of super-tolerance to pain medications.  Last fall I was excited because I was prescribed 10mg of oxycontin, and I’d hoped it would help get my sleep back on track, and help me wake up pain free.  Yes, I was just taking one 10mg oxycontin per day.  Jump ahead eight or nine months to the present, and I’m on oxycodone because it’s less expensive, and I take 15mg every four hours.  I’ve gone from 10mg per day to 90mg, and while I have some pain-free moments, I’m pretty content if I can get my pain down to a steady three or four on the pain scale.  Getting it down to a two is like a miracle and it makes me want to dance a jig.  I’ve never been one to develop a tolerance for medications, (for example, I’ve been on the same dose of Ativan since 1999 (and it still works for me)).  That’s why I’m confused about the way my pain seems impossible to control—is it getting worse, or are the meds just not working the way they should?

I would prefer to be on oxycontin because it lasts much longer than oxycodone, but the cost is about triple (and unaffordable without health insurance).  I tried inexpensive MS-Contin, and even at a fairly big dose I didn’t feel anything.  The one inexpensive med I haven’t tried is methadone, a drug which costs about $13 per month and which worked miracles on Flippy until it interfered with her more-important bladder medication.  The reason I’ve avoided it is because it seems to bind with every pain receptor available, rendering meds for break-through pain ineffective.  That’s sort of scary, because if I had an accident and broke a bone, or needed some sort of surgery, it would make it very difficult for me to be treated for pain.  I’m not at the point where methadone is my only option, but I’m starting to think about it more.  I hate going to my pain specialist every month and asking for higher and higher doses of medication, because I know it doesn’t look good in my file, even if I truthfully need it.

The one bright light in the distance is Xyrem.  Xyrem restores normal sleep patterns in patients with fibromyalgia, and given my recent problems with excessive sleepiness, I think my sleep patterns need a complete overhaul.  The drug is in Stage III clinical trials right now (unfortunately, the trials aren’t in Nevada), but the pharmaceutical company really thinks they’ve got a shot at FDA approval for the treatment of FMS by next year.  I asked my pain managment doctor about it and first he’d never heard of Xyrem, and then he had an apoplectic fit over it being a “date rape drug”.  He calmed down slightly when I pointed out that any medication, like Ativan or Xanax, could be used as a date rape drug—Xyrem, aka “GHB”, was misused in the past because it was a legal, otc health supplement, and easy for people to get.  My doctor still refused to prescribe it, despite all the positive literature about it, but offered to refer me to one of his more adventurous colleagues if I wanted a prescription.  I really do want to try it, but it’s fairly pricey, so it’s going to have to wait.  That’s why I’d love to get into a clinical trial: free medication.  Xyrem either works for people or it doesn’t, but the people it’s helped have been practically “cured” of their FMS, so I think it has a lot of potential, and it’s something to dream about on a bad day.  If you want to know more about the Xyrem clinical trials (maybe there’s one near you), here’s a list:  Xyrem Phase III Trials

Lest you think I’m all about pharmaceuticals, I tried something a bit experimental: “Bio-Cranial”.  I’ll write an entry about my experience later today.

Posted by Leigh-Ann on 08/05 at 05:34 AM
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Sunday, June 17, 2007

And, oxycodone isn’t working

For the last six months, my life has just been a pain pill rollercoaster!  I can’t seem to find a pain medication which works, and if I do, it either buries me in side-effects or costs a small fortune.  I could have a nice new car for what I spend on pain meds every month.  A couple of weeks ago, I decided to go back to just oxycodone, because an entire month’s worth of medication (being really medicated, too), cost just $85.  It seemed like a sensible idea, but I quickly realized it wasn’t going to work when I started to wake up in excrutiating pain.  Oxycodone only lasts about four hours, so unless I woke up in the middle of the night to take a pill, I’d end up with no pain meds in me after eight hours of sleep.  I tried it for a week—I’d wake up, hobble to the medicine chest and to a granola bar, and wait 90 minutes to feel normal again - but there was a residual effect which lingered throughout the day.  I had a hard time staying ahead of the pain when I had to medicate every four hours, and I had a hard time determining how much to take to ward off pain but to avoid nausea.  After about ten days, I called Uncle, and went back to my leftover oxycontin.  What a relief it was to have a steady release of medication over the course of eight to twelve hours!  It made me appreciate oxycontin again, and I seem to have found a good schedule for it.  I take one 10 mg oxycontin every eight hours, and I take one 5mg oxycodone at the same time.  If I start to feel like I’m faltering at the four hour mark, I can “top up” with another 5mg of oxycodone, but I seem to only need to do that about once a day.  I’ve actually felt not to badly for the past week, although I’ve been rather fatigued.  Still, I’d rather be tired and pain-free than tired and painful.  This new discovery of mine means I have to go back on oxycontin, and I guess it will be about $200 per month.  I just don’t know what else to do.

My partner, Flippy tried a bold new experiment for her pain medication this month—she’s on methadone.  Her oxycontin dose was getting pretty high and she was having a lot of break-through pain.  To top it off, she’s already used up her pharmacy benefit for her health insurance this year, so all her meds are out of pocket, too.  From her research, she knew that methadone was an effective and low-cost medication to help with her FMS and low-back pain, so the doctor wrote her a prescription.  The cost for one month of methadone, paying cash, was just $13.  Stunning.  Even more stunning is the fact that it seems to be working.  For the first two weeks she had some break-through pain, and took oxycodone for that, but since then the pain has evened out and she’s mostly pain-free.  The worst part of the methadone for her was initially nausea, but it’s starting to ease off after a couple of weeks (and Vistaril helps with it as well).  An unexpected side-effect popped up after the nausea—Flippy’s overactive bladder medication stopped working, which made it very uncomfortable for her to work for long hours or drive in the car.  At first she was in a bit of a panic, assuming she’d have to quit the methadone, but she’s increased the dosage of her bladder meds and so far, it seems to have resolved the problem.  If it’s not one thing, it’s another… now the bladder meds will cost twice as much every month, even though we’re saving on pain medication expenses :p

I’d love to live a life without pain medication.  I’d also like to be able to afford to try a higher dose of the Duragesic patch, or to try the new pain medication like Opana, but without health insurance (or more cash), I’m stuck with what I’ve got.  I realize that I’m lucky to be able to afford what I’ve got, and to have a doctor who will prescribe it for me, but it’s not the way I want to live.  I hate that the cost of being sort of/occasionally pain-free is constipation, reflux, urinary retention, and poverty.  Those all contribute to stress, which make my FMS worse, which causes me to need more pain medication.  Stop the ride, I want off!

Posted by Leigh-Ann on 06/17 at 04:18 AM
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Tuesday, June 05, 2007

Back to oxycodone

So, Fentanyl patches were expensive, and they didn’t work very well at the dosage I could (barely) afford.  This month the doctor and I decided to simplify, and I’m now on just oxycodone, which I take as needed every four to six hours.  I can take up to 15mg at a time, but so far, I’m trying to stick to 10.  Cost-wise, it’s super—an entire month is just $50, instead of about $250 for patches or oxycontin.  On the other hand, the pain really is a rollercoaster.  If I want to wake up pain-free, I actually need to take pills in the middle of the night (not very practical).  I usually try to take them as soon as I get out of bed, but I feel miserable until they kick in, and it can take up to two hours to feel the full effect.  I think I get about three hours of relief per six hours, which doesn’t make the day particularly comfortable or productive.  I think I’d ideally like to be on 20 mg of oxycontin, every eight to twelve hours, but it’s hard to toss around that kind of money every month.  There’s currently some sort of legal action going on against manufacturers of generic oxycontin, too, and I think that the generic is now going to be made solely by the company which manufactures the brand name (because that makes a lot of sense :p).  I’d imagine that will raise prices even higher, although it should give the medication more consistency.  Both Flippy and I have noticed that some generics are of better quality than others, an observation echoed by many other folks on Internet message boards.

Speaking of Flippy, she’s trying out an even cheaper medication this month, the notorious methadone.  Flippy’s pain is greater than mine because she has both fibromyalgia and back pain, so she needs a high dosage of medication than I do, yet an entire month of methadone cost just $14!  Even better, it’s actually working for her, and although she was given oxycodone for break-through pain, she’s stopped using it.  I think this is the first real pain relief she’s had in quite a few months, so in that sense, methadone has been a real gift.  Unfortunately, she’s having a very difficult time with the side-effects, primarily nausea.  Anecdotal reports say the nausea should subside after two weeks, so she’s trying to hang in there.  It’s frustrating that she can’t take any medications like Ativan (our usual source of nausea-relief), because mixing benzodiazepines with methadone is a no-no.  I need to get her to phone the doctor’s office to find out if there’s some other medication she can take in lieu of Ativan, although I sure hope they don’t recommend something like Zofran, which costs at least $20 per pill.  Methadone is an obvious choice for me to try as well, but the side-effects of nausea and agitation really don’t appeal to me.  At all. 

All honeymoons must end sooner or later, and this last doctor’s appointment was the end of my honeymoon with my pain management doctor.  I mentioned Xyrem to him, which is the medical form of GHB, and which has received rave reviews from fibromyalgia patients.  Xyrem causes deep “stage four” sleep, allowing the body to produce human growth hormone, and many FMS patients have been able to completely eliminate all pain medications from their lives after they start sleeping properly.  The drug has been used “off-label” for FMS since around 1998 (it’s FDA-approved as a drug for narcolepsy), and it’s even prescribed by some general practioners who see FMS patients.  It’s extremely expensive, but the manufacturer offers a special program for people without insurance, and the thought of being “cured” is very appealing!  Sadly, my doctor had never even heard of the drug, and was rather condescending about it.  It really surprised me, because Xyrem is considered safe, and is in the last stages of drug trials before seeking FDA approval to be the very first drug specifically indicated for fibromyalgia.  The fact he’d never heard of it, and was mocking about it, was disturbing to me.  I don’t want to take opiates for the rest of my life—I hate them.  They’re expensive, they give me reflux, they have all sorts of social stigmas attached to them, etc.  I want a doctor who believes I can eventually be cured, and I don’t think my current doctor is that person.  Of course I’ll continue to see him, and I’ll continue to take my narcotics so I can function, but all I really want is a normal life again.  If my current doctor doesn’t have the same goal for me, I’ll definitely start looking for another one.  In the meantime, I’m sending the doctor some printouts about Xyrem from the Journal of Rheumatology.  It will probably annoy him, but I need to do what’s best for me and my health.

Posted by Leigh-Ann on 06/05 at 02:58 AM
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Monday, May 07, 2007

Fentanyl patches

After a few months of tweaking my Oxycontin dosage, I asked my doctor if I could try the Fentanyl patch.  The Oxycontin/Oxycodone combo was working fairly well (20mg Oxycontin every 8 hours, plus Oxycodone for break-through pain), but I don’t want to have break-through pain.  I just want to be pain-free, period.  I want to wake up and not feel like weeping when I try to get my sore old body out of bed, and Oxycontin just wasn’t giving me that extended relief.  Fentanyl is supposed to last for 72 hours, and even if it only lasts for 48 hours as anecdotes suggest, that could still mean I’d have two nights of pain-free sleep, and two mornings of feeling almost normal.

I put the first patch on Friday evening, and will change it later tonight.  I’m taking Oxycontin concurrently, to wean off it and will be on Fentanyl only by Thursday.  So far, I feel quite normal, and haven’t noticed any odd side-effects.  I’ve had a couple of “hot flashes” for lack of a better word (short, quick instances of perspiring and feeling warm), but they pass quickly and could just be weather-related, or even fatigue-induced.  Today I had itching around the patch site, but I think I’ve got a skin allergy to the adhesive I’m using to hold the patch on (it started to peel off, so I put medical tape around the edges to keep it in place).  I’m notoriously allergic to those sorts of adhesives, and one of my concerns about Fentanyl patches is whether or not my skin will be able to handle it.  So far the skin I can see under the patch (it’s clear) looks perfectly fine, so it may just be the extra medical tape which is giving me trouble.  Apparently the manufacturer of the patch makes an adhesive cover for people who have trouble with adhesion, so I’m going to price those when I get a chance.

Price-wise, the Fentanyl patches are a step in the right direction.  My doctor says that my 25 mcg patch is the equivalent of taking 30+ mg of Oxycontin per day.  If that’s true, then the patches cost about $50 less than the Oxycontin tablets.  I could save even more money by switching to a different brand of patch (one is about $25 cheaper than the Sandoz-manufactured one I requested), but I’ve read Internet stories from folks who didn’t feel the cheapest patch was of very good quality.  Because of that, I picked the mid-priced one, but I could also get the real thing for about $50 extra.  The cost for a month’s worth of 25 mcg patches is about $150 (for the Sandoz brand).

The negative part of using Fentanyl is that there’s no quick and easy pill for break-through pain, and the only option is the Actiq “transmucosal lozenges” (I think they’re like lollipops).  Doctors don’t want you to mix and match your drugs in case you develop a tolerance to one and it stops working, so I have to give up my Oxycodone completely and just stick to meds from the Fentanyl family:  the patch and the Actiq supplement.  The Actiq costs $500 for 30 doses, so I’ll want to avoid that completely!

I’ve got an appointment with the doctor again at the end of this month, and I’ll decide then if I want to continue this experiment.  My sleep is getting worse and worse, and my morning pain is becoming so debilitating, that it was either switch to a longer-acting drug or start a whole cocktail of sleep aids, and more pain meds, and then stimulants to help me stay alert during the day.  I want to take as few things as possible, (both for health reasons and cost), so maybe a long-acting pain solution will help me regain my sleep and I’ll wake up feeling rested.  I’m keeping my fingers crossed!

Posted by Leigh-Ann on 05/07 at 03:22 AM
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Sunday, November 26, 2006

Annoying legalities

I had my second appointment with Dr. Joseph Gnoyski (fibromyalgia/chronic pain specialist) this past Tuesday, and was pleased.  Once again the office was perfectly on time (even though the waiting room was a bit crowded), and the office had asked that I prepare a “follow-up” sheet in advance of my visit, outlining how I was feeling, mentioning meds which needed refills, and listing any issues I needed to discuss with the doctor.  I really like how organized they are, and how they seem to want to listen to what I have to say!  I did have to do the “dice roll” for random urine testing for illegal drugs, but I rolled a nine and was cleared for this visit.  I guess I should ask what they’re checking for—I know I’m only taking what I’ve been prescribed, but I’m curious out what drugs they specifically think are problematic.

I’ve found that 10 mg of oyxcontin just hasn’t been controlling my pain very well, so Dr. Gnoyski requested that I start to take 10mg every 12 hours instead of every 24.  He said that was the way OC seemed to work best—it should be in the body consistently.  He wrote me a prescription for 120 pills, enough to carry me for two months until my next appointment.

We took the prescription to our regular pharmacy on Tuesday afternoon.  Everyone who works there knows us—we get scrips filled all the time, and we also do our grocery shopping at the store, so it’s not as if we’re unfamiliar faces.  The pharmacy tech looked at my prescription and said they didn’t have enough pills in stock to fill it.  I asked if they could just give me what they had in stock, and let me pick up the rest later, but they aren’t allowed to do that.  I can have all or nothing.  She said they’d order the pills, but she doesn’t expect them to be in until next Tuesday at the earliest.  They have to be special-ordered and hand-delivered or some such nonsense.  The oxycontin I had on hand ran out yesterday, so now I’ve got no meds until next week.  I don’t know who to be angry at—am I being inconvenienced by a federal law or a state law?  Or, is it just a state pharmacy board regulation?  How crazy is it that the pharmacy MUST dispense ALL my pills at the same time, and must deny me even 4 or 5 pills to get me through to the expected delivery date?  Their only suggestion was that I try another store (but I have a feeling the pharmacies are only “allowed” to stock a limited number of oxycontin pills at one time), or to get the doctor’s office to write me a new prescription.  That prescription would have to be picked up in person, of course, because they aren’t allowed to be phoned in.  I think it’s all really, really stupid.

The doctor warns me to be careful while picking up my oxycontin prescription, because some of his patients have been robbed outside the pharmacies and their pills stolen.  Thanks to the illogical laws here, if anyone wants to try to rob me next week, they’ll get their hands on 120 pills instead of just the 60 they would get if I was allowed to pick up my pills on two separate dates.  As usual, laws surrounding prescription and OTC drugs seem to always be about inconvenience for law-abiding people.  I also now have to come up with twice as much money for my cash-pay prescription, because I can’t stretch out my payment over two months.  It’s frustrating, yet these pills eradicate my pain and give me my life back, so I’m willing to jump through hoops of red tape to get them.  I just wish I didn’t have to.  It’s like I’m being punished for needing them.

I’ve wanted to post more, but have been bogged down by a slew of new part-time jobs (thank goodness for mental clarity!), and by participating in NaBloPoMo on The Blog Pound.  All this writing is good practice, but it doesn’t allow me much free time.  At least I’ve had the energy and ability to stay focused and to get the jobs done—my new doctor has made life a lot more enjoyable than it had been.

Posted by Leigh-Ann on 11/26 at 01:12 AM
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Thursday, November 02, 2006

Vitacost.com sale

I get so much email that someone should benefit it, so I hope it’s someone reading this.

Until the end of November, Vitacost.com is offering 5% off their regular prices if you shop and use discount code WE21A7.  They do have a huge selection of vitamin products, and they have good prices, but I rarely need to buy anything from them.  I used to take selenium on the advice of my endocrinologist, and I try to take a B-vitamin supplement daily, but that’s about it.

Posted by Leigh-Ann on 11/02 at 07:18 PM
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Monday, October 16, 2006

Fibronal and Fibroboost

So, have any of you tried Fibronol and/or Fibroboost?  I received an advertisement for them in my email, and while I’m normally skeptical about such things, the email was from a reputable company with a good history of helping FMS/CFS patients.  If I may quote their promotional literature, ”Classified as a natural ocean-based food product, Fibronol is a safe, effective and natural supplement, clinically proven to provide significant improvement in the quality of life for those with either FM or CFS. In November 2005, an abstract summarizing the Fibronol Phase 1-a clinical trial reported the following:

80% improvement in sleep quality
30% reduction in fatigue
71% gain in energy
31% reduction in perceived pain levels
39% improvement in overall condition ”

Those are some pretty impressive claims, which tempts me to give them a try.  However, they’re not cheap (what a surprise!).  If you’ve had experience with either product, and especially if you participated in a clinical trial, I’d love to hear your thoughts and experiences.

Posted by Leigh-Ann on 10/16 at 01:02 AM
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Friday, September 15, 2006

Once more, with feeling

I promise this is the last time I’ll ponder this in public:  I’m now positive that Cymbalta makes me sleepy.  I’ve raised my dose from 20 mg to 40 mg (most people who take it for FMS seem to be taking at least 60 mg, so this is a step in that direction), and I decided to split the dose rather than take it all at once.  I’d already switched my single dose to the evening, because I suspected it was making me sleepy, but I wasn’t positive (because I’m often sleepy).  Today, however, I took my first daytime dose of Cymbalta in the last few weeks, and wow, was I drowsy!  I could hardly keep my eyes open, and had a nice nap while Flippy was in the same room, talking to her mother on the telephone.  Nothing was going to keep me awake today.  That means that tomorrow, I’ll have to make sure I take all 40 mg before bed, or I’m going to end up like a zombie during the day.  That just won’t do.

I have a “working job interview” at 7:15 am next Tuesday, to be a vet assistant.  I’m worried about lots of things (like brain fog making me appear to be an idiot), but one of my biggest concerns is getting up so early in the morning!  Luckily, if I was to be offered a job, it would be a four-day work week, so I’d have three days to recuperate.  I have no idea how things will go… we’ll just wait and see.

Posted by Leigh-Ann on 09/15 at 09:01 PM
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Tuesday, August 29, 2006

You are getting sleepy…

I firmly believe that one of the keys to coping with FMS is getting a good night’s sleep.  That’s probably also the most basic key to overall good health for anyone, but for people witt FMS, disrupted sleep or lack of sleep can make a uncomfortable situation an unbearable one.  I’ve been prescribed numerous sleep aids over the years, and they seem to be like anti-depressants—you need to find the one which is a good “fit”.

I’ve tried Sonata, which left me groggy in the daytime (something it wasn’t supposed to do), and Ambien, which still had me waking up in the middle of the night.  I could get back to sleep again, but I wasn’t sleeping straight-through, and I was concerned about Ambien’s reputation for causing dependency.  I also tried Elavil (Amitriptyline), but didn’t really feel it made a big difference.  Trazodone helped, sort of, but whenever I took it, it caused an odd “head pressure” sensation for about an hour.  It was unpleasant.  Ultimately, the sleep aids which worked best for me ended up being Ativan and Klonopin, but Ativan has been the one I’ve stuck with for the last seven years.  I can take .5 mg before bed, stay asleep, and feel rested, and it’s easy enough to skip a dose every few days to avoid dependency.  Unfortunately, it’s sometimes hard to find a doctor who wants to prescribe these meds as sleep aids, as they think they’re too prone to being abused.

Now there are two newer sleep aids, Lunesta and Rozerem, designed for long-term use and with a low risk of developing dependency.  I haven’t tried either, but I’d definitely be willing to test drive some samples if I get the opportunity.  There’s just nothing more satisfying than a good night’s sleep!

Posted by Leigh-Ann on 08/29 at 10:49 PM
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Saturday, August 12, 2006

More Cymbalta, more shoes

I’ve been taking Cymbalta for about three weeks, and I seem to have adjusted well.  For the first couple of weeks I definitely developed a post-Cymbalta headache every day, but that’s now stopped happening.  I’ve felt really fatigued for the past couple of weeks, but I’ve got no way of knowing if it’s the Cymbalta’s fault, or if I’m just tired from activity and the heat.  I’ve noticed quite a few people finding my blog while doing searches for things like, “Cymbalta makes me tired”, but I’m afraid I can’t help with any advice or suggestions on that subject.  If my excessive sleepiness goes away by the end of August, I’ll assume the Cymbalta was the cause, but otherwise, it’s just the way things are.

I’m not sure if Cymbalta has had any emotional effect on me, but I have the attitude, “no news is good news”.  I don’t feel on edge or agitated, and that’s what I’m looking for—my reasons for taking an anti-depressant are varied, and many of my symptoms are subtle, so making decisions about efficacy tend to take a long time.

I’m going to order some Cymbalta from Progressive Rx this weekend, in hopes the quality will be good.  It’s hard to beat the price ($100 for 6 months, instead of $100 per month at a US pharmacy), and we use Progressive Rx’s version of Prilosec and it’s good stuff.  They tend to ship fairly quickly, too.

On the subject of shoes, my new brown leather Earth Shoes were delivered yesterday.  I love them!  They’re not quite as soft and comfy as my Earth athletic shoes, but they look good, and it feels good to wear them.  They honestly do improve my posture, which in turn makes my back happy.

Posted by Leigh-Ann on 08/12 at 09:20 PM
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Sunday, August 06, 2006

Modafinil / Provigil

I should post here more often, but I’m tired.  It’s rather ironic… I have a blog about fatigue, in which I’m too tired to post.

One medication which has helped me with some of my fatigue issues is Provigil, otherwise known by the generic name of Modafinil.  It doesn’t help with physical fatigue as much as it helps me with “mental fog”, that almost inexplicable pea soup which clouds my thoughts, and makes thinking almost palpably painful.  There are times where I’d describe myself as “tired”, but upon deeper examination I realize it’s my brain which is tired and not my body.  The mental fog has been the most frustrating aspect of FMS for me, because I love to read and write and learn new things, and the fog makes something fun, like taking a class, into something torturous.  For years I’ve wished I could go back to school, yet I know I could barely cope with one class, let alone an entire course.  I do think the mental fog is caused by mental overload from pain, i.e., my body is constantly in pain, which my brain has to process, and the neverending cycle causes brain burnout, but in lieu of pain relief, Modafinil has proven to be a valid aid to mental clarity.

Modafinil is a stimulant, and was originally prescribed as a treatment for people with narcolepsy.  I believe it’s in the same class of drugs as things like Ritalin, and I recall that at least one athlete was disqualified from an international competition for testing positive for Modafinil.  That being said, I’ve never felt any overt “stimulant” effects from Modafinil, and it doesn’t make me jittery or jumpy the way caffeine does.  I don’t think I’d ever take it in conjunction with caffeine though—I’ve tried to cut all caffeine out of my life because of the “jitter” factor, and Modafinil might exacerbate the effects of caffeine.  I don’t want to find out.

I take anywhere from 50 to 100 mg of Modafinil on days when I need to be able to focus, for example, on a day when I’m attending a seminar.  Anecdotal evidence says that Modafinil can lose its efficacy if used on a daily basis, so I avoid doing that, and limit taking it to just one or two days a week, at most.  The days when I do take it end up being very productive, and I can gets lots of “mental work” accomplished because my mind isn’t wandering or sluggish.  It’s especially helpful if I’m doing work on the computer and am trying to learn to use a new type of program, or am doing detailed work on the server where mistakes could be costly.  Modafinil has been called a “smart drug”, and it really does seem to make the process of thinking and learning more efficient.

Just a decade ago, I was taking a full course-load at university and had no problems keeping up in class or doing my homework.  Modafinil isn’t a shortcut to avoid good work habits, but it seems to help the brain stay on track if it’s been hit with “mental fog” problems.  I think this medication could help me go back to school full-time, except I worry that it might stop working if I take it long-term.

Here are a few fibromyalgia / Modafinil articles if you’re interested in reading more:

Modafinil in Fibromyalgia Treatment

Study Shows Modafinil Reduces Fibromyalgia Fatigue

Modafinil Reduces Fatigue in Patients With Fibromyalgia

I buy my Modafinil / Provigil from Anti-aging Systems, where I’ve purchased some thyroid medications as well.  They’re based in the UK and I feel comfortable with their medication safely and quality.  To buy Provigil here in the US, without prescription health insurance, would leave me completely and utterly broke.

Posted by Leigh-Ann on 08/06 at 09:51 AM
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Tuesday, July 25, 2006

Cymbalta

Tomorrow will be day 7 of my Cymbalta trial, and so far, I don’t have many complaints.  I spent a week tapering down my Effexor dosage to try to avoid any discontinuation syndrome before I started Cymbalta, but I’ve still been dealing with some mild nausea and an unpleasant headache for the past few days.  Unfortunately, it’s impossible to tell if those things are caused by stopping Effexor, by starting Cymbalta, or even by the weather (it’s been unusually humid and overcast with a lot of low pressure).  I find a sinus pill and a couple of Advil keep the headache under control, so it might just be a combination of many things causing the symptoms.  I also haven’t been sleeping well, which is a normal problem not necessarily Cymbalta-related, but it could be headache-related. 

One symptom I’m quite sure i can attribute to Cymbalta is hunger.  I’ve been ravenously hungry this past week, and I need to watch what I eat so I don’t contribute to any unnecessary weight gain.  I hope this might ease up over the coming weeks.  I also noticed that for the first few days I felt a little “weepy”, but that could definitely be a post-Effexor problem as I’ve had it in the past. It seems to have gotten better—I don’t know how to describe it except to say it’s the sensation behind your eyes and in your head of being about to cry, but over nothing in particular.

I’m only taking a 20mg dose of Cymbalta daily, and I’ll definitely stick to that for a while before I try to increase it to the 40mg the doctor prescribed.  As for whether I’ll stay on it long-term, I can’t say, but so far I feel my body is tolerating it better than it’s tolerated many other drugs.

Posted by Leigh-Ann on 07/25 at 08:38 PM
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