Thursday, September 18, 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?
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.
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.
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.
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.
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!
SORRY, THIS ENTRY IS CLOSED TO NEW COMMENTS BECAUSE OF MORONIC SPAMMERS. FEEL FREE TO EMAIL ME, HOWEVER… IT’S A SHAME THAT WE CAN’T HAVE AN INTELLIGENT DISCUSSION WITHOUT PARASITES TRYING TO TAKE OVER.
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.
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.
Monday, May 07, 2007
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!
Sunday, April 08, 2007
Yes, I’m alive!
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.
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.
Tuesday, February 06, 2007
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.
Sunday, February 04, 2007
CFS gets a new name
From an ImmuneSupport.com newsletter: “A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether ‘Chronic Fatigue Syndrome’ was an appropriate name for the disease, and to suggest an alternative name if necessary. Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names.
The majority of attention was spent discussing ‘ME’ - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. ‘ME’ has been used in many countries, including Great Britain. ‘ME’ has historically been used to describe ‘Myalgic Encephalomyelitis’ (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred ‘Myalgic Encephalopathy’ (nervous system pathology with associated muscle pain), which is also abbreviated ‘ME’. This satisfied the researchers that this form of the term ‘ME’ is diagnostically accurate.
The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that ‘CFS’ should accompany any new name, at least for a period of time. The researchers expressed their belief that the term ‘ME/CFS’ is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where ‘CFS’ was recently changed to ‘ME/CFS’.”
I think this is definitely a step in the right direction, even if something simple like a name change seems a bit silly and trivial. Most healthy people think they understand the “fatigue” element of “chronic fatigue syndrome”, which makes the condition so maligned and misunderstood. A name like ‘Myalgic Encephalopathy’ commands a lot more respect.
Saturday, February 03, 2007
The high cost of eating well
I got my whining about weight-loss and pain out of the way in my previous post, so now I can write about something which really concerns me—the high cost of eating well. When I signed up for the Las Vegas Losers, one of my plans was just to eat better food than I do now. I’m a very good eater, and healthy foods are some of my favourite foods, so eating a healthy diet should come easily to me. I love cucumbers as much as I love chocolate, I crave rutabagas, my idea of a perfect food is a piece of sashimi, etc. I love a bowl of gently steamed fresh green beans as a snack, and I like my vegetables without butter. This should be, no pun intended, a piece of cake.
When I hit the grocery store to shop for my lower-cal meals, reality set in. On my tight budget (tight because I work from home, on commission, and have huge medical bills with no health insurance), I could only afford the food that was bad for me. Two cucumbers for a cucumber salad would set me back $3, but a dozen Little Debbie Swiss Cake Rolls was just 99 cents. A pre-made caesar salad with “lite” dressing (a good meal idea because I’m often too tired to cook) was $3.49, but an entire box of freshly baked cookies was just $3.00. Chicken breasts were $8; four boxes of macaroni and cheese mix were on sale for $1. I know I have to keep a lot of ready-to-eat (or “easy-to-prepare”) foods on-hand, and anything in that category that was actually healthy was terribly expensive. In retrospect, there wasn’t much in that category to choose from, anyway. If I could afford to shop at Whole Foods, I could have any number of prepared taste sensations waiting for me in my refrigerator, but at the local Smiths, my budget “taste sensation” could end up being a 99 cent Banquet frozen dinner with 450 calories and 23 grams of fat. The Lean Cuisine dinners, which are excellent, can cost almost $4 each if not on sale, yet a “Hungry Man” dinner with something nauseating like “2 pounds of food” cost half that. It’s very, very difficult to pay so much more for something healthy, when every penny counts.
I love to cook, and wish someone would pay me to lose weight. I wouldn’t have to tire myself out by working, I could just tire myself out by cooking! I wish I had a personal chef. I wish there weren’t so many other huge things to worry about each day beyond what I’m going to cook for dinner, and I wish fresh produce would just magically teleport itself into my refrigerator.
In summation, all I can offer to anyone else in my shoes is this one piece of advice: if your money is tight and you want a quick meal that won’t make your gall bladder explore, try a frozen turkey dinner. Even the cheap 99 cent Banquet dinners are fairly low in fat, have a bit of fiber, have a reasonable number of calories, and they even have vegetables!
The grand experiment would be grander if I actually attempted it
I recently wrote about joining a weight-loss group, the Las Vegas Losers. My theory was that if I participated in an informal group for my own experimental purposes, perhaps I’d be able to lose weight without pressuring myself to do it in a stiff and structured way. That doesn’t sound like a recipe for weight-loss success, but my problem over the past few years has been that my body is so unpredictable, it’s impossible for me to stick to an exercise plan, an eating plan, etc. I’d hoped that just the daily reminder that I was part of a weight-loss experiment could help me to find little ways, every day, to make a difference to myself.
While I haven’t weighed myself yet, I have a feeling I haven’t done anything so far to make a difference. I’ve had to work seven days a week to earn enough money to get by, so even though I work from home, I’m still working more than forty hours per week. As any FMS patient will tell you, doing anything at all for any length of time ends up being painful and exhausting (yes—even sleeping can be painful and exhausting for an FMS patient!). I drag myself up in the morning, sit down to work, and drag myself to bed at night. Exercise seems to be out of the question, given the pain I’m in from working. Eating properly is difficult because I’m too tired to cook dinner, so I eat whatever is fast and handy. I’ve been on a “muffin kick” lately because of a cookbook my sister sent for Christmas, so I’ve stayed up late a couple of nights baking interesting muffins. Those are good for me, high fiber, and low fat, but it’s a drop in the bucket.
So sadly, all I’ve got to report after the first couple of weeks is lots of pain. The pain gets worse and worse all the time, and the 10mg of oxycondone that used to leave me feeling queasy and dizzy now feels no more effective than a multivitamin. I’m told to take my 10mg of oxycodone CR twice a day, and then to top it up with up to 20mg of regular oxycodone every four to six hours as needed, and I can’t bring myself to do it. I’m in pain, but I fear that the pills will be a temporary fix before the pain rises up to be victorious again. It frustrates me. I hope it’s just the cooler and damper winter weather causing this, because my FMS gets worse with every passing week. Forget weight-loss… I’m a winner if I can get out of bed in the morning and actually earn a few dollars.