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.

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.

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.

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!

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.

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.

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!

I’m writing this rare post to give kudos to the Fibromyalgia Network.  I finally joined the organization a ccouple of weeks ago, and I’m thrilled with their newsletter.  I actually bought a combo package of a membership plus 18 back issues of their newsletter (Membership + 18 issue back pack), and I’ve really enjoyed reading all the information in each issue.  There are no ads, just articles, and almost all of them have proven to be relevent to my condition.  The articles feature cutting-edge information about new drug trials and medications, rather than slipping into namby-pamby stuff like “fibro-hugs”.  While the occasional “fibro-hug” sent through cyberspace might be a mood-lifter, it’s not going to take my pain away like a prescription medication can.  There’s also information on alternative treatments, like yoga, but the majority of space is devoted to news from the world of medicine.

Another great thing about joining the Fibromyalgia Network is that they send you a list of approved doctors in your area who treat fibromyalgia.  My own doctor was listed, as were three or four others who I wasn’t aware of.  I think this is an excellent resource, and highly encourage you to at least buy one sample issue if you’re still not sure about joining.  I feel like I’m well-informed about FMS treatments, but these newsletters took my awareness up another notch.

On a personal note, I’m hanging in there, although I still feel as if my FMS is getting worse.  I’m holding down two great jobs, and I’m sure that I push myself a bit too hard.  At least the medications I’m on have given me the ability to push myself as much as I do.  I’d still like to find the “perfect” pain medication, but also want to explore some “treat the cause” therapies, like HGH.  I wish GHB was legal… from what I’ve read, the drug Xyrem (the prescription version of GHB) can work miracles for FMS patients.  Those of us who obey the law always end up being screwed by people who don’t.

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.