Saturday, June 06, 2009

Live Oprah’s Best Life Ever

I looooved this lengthy Oprah exposé from Newsweek, Live Your Best Life Ever!  It’s an entertaining read, and it’s about time her critics started speaking up.

Posted by Leigh-Ann on 06/06 at 10:10 PM
FMS News, Hot Off the Press • (0) Comments • Permalink

Wednesday, June 03, 2009

Dreams at Stake

Here’s a beautifully-written blog entry about a woman’s experience with chronic fatigue syndrome.  The entry is actually the entire blog, and the author doesn’t know if she’ll ever have the strength to write another, but this one is absolutely worth the read: Dreams at Stake

Posted by Leigh-Ann on 06/03 at 06:51 AM
Tired Girls • (1) Comments • Permalink

Sunday, May 31, 2009

Why do people think it’s okay to abuse FMS patients?

It’s pretty sad when the people who understand you best are total strangers, but that seems to be the case with many people diagnosed with FMS/CFIDS.  This message board thread about how people can be callous and judgmental about those of us with this diagnosis really hit home for me: Are you secretly embarrassed by FM?

Sometimes a person has to walk a mile in your proverbial shoes to learn compassion.  My own family has always believed I had FMS, but also felt that I could probably be cured if I could get myself out of the stressful life I lead here in the US.  At least they had a point with that: stress definitely makes my illness worse.  I don’t think they ever fully understood the pain aspect until my own mother developed a chronic back ailment and had her life altered by daily pain that wasn’t fully controlled by strong medication.  She found out what it was like to have people tell her she looked fine when she felt horrible.  She found out what it was like to go to the emergency room because she had so much pain she felt like dying, yet she had the doctors look at her like she was a drug-seeker.  Since that day my family has never been anything but completely supportive of me, to the point of begging me to come back to Canada so they can help make my life easier.  I appreciate that support more than words can say, and know I’m lucky to have a family standing by me.  It’s terribly sad that other people have to deal with both family members and strangers tossing out ridiculous statements about “pulling up bootstraps”, as was mentioned by a few folks in the thread linked above.

Posted by Leigh-Ann on 05/31 at 02:19 AM
Tired Girls • (0) Comments • Permalink

Monday, May 25, 2009

Fibromyalgia and Fatigue Centers

Have you had one of these Fibromyalgia and Fatigue Centers show up in a large city near you?  Like an exploitive cult, these centers appear to offer unique, specialized, and understanding treatment of fibromyalgia and chronic fatigue, which sounds great until you figure out the catch:  they treat you with huge amounts of vitamins and vitamin infusions via IV which are proprietary, meaning you can only buy them from their pharmacy and you can’t compare prices.  If you join Jenny Craig for weight-loss and spend all the money to buy their pre-made meals and stick to their diet plan then sure, you’ll lose weight.  But what happens after you leave Jenny Craig, or you run out of money and can’t afford to buy their proprietary meals?  Do they then teach you how to cook for yourself using ingredients you can find at any supermarket, or do they kick you to the curb with a wave and a, “sorry you don’t have enough money for us to help you anymore”?  I’m sure you know the answer.  So it goes with Fibro and Fatigue Centers: treatment for your disability until you can’t afford to pay for it.  The treatment itself is even questionable, because there’s no “one size fits all” cure for fibromyalgia or chronic fatigue.  We all have different symptoms, different modes of onset.  Also, the FFC makes no claims that fibromyalgia is curable (which is doesn’t seem to be, although it can go into remission).  So, they’re setting up patients to need hundreds of dollars in proprietary treatments each month, forever.

Does the treatment at the Fibromyalgia and Fatigue centers work?  For some it probably does, for some it doesn’t.  The problem is that the center takes so many thousands of dollars from each patient that the ones who aren’t helped are left broke and remain sick.  Here’s a quote from someone who started to go to the FFC last October:  ”I went to this center. I can’t say yet if it helps. I know it costs a fortune. I have borrowed from everyone I know. They tell you it will be $400.00 first trip but what they don’t tell you is that you walk out with $1000.00 worth of supplements that you “absolutely need”. Then you have to contact them every month at $200.00-$400.00 a pop. They also use a pharmacy that special blends your meds. very expensive. I have to fly to get to mine which costs a pretty penny and also i miss work. It’s been 3 months and i almost hurt more now then when i started. Oh Yeah tons of blood work too, and i forgot to mention that they don’t accept any insurance. completely out of pocket.” If you have money to burn, then what the heck, give them a shot.  If you have money the burn, why not just jump ahead and go straight to Cenegenics, another lifestyle medicine center which offers treatments for everything from general “aging” to FMS?  At least Cenegenics offers injections of HGH as treatment, which is what my endocrinologist recommended, and which has helped quite a few people.  They only help the wealthy, though… there’s no “hardship” program for the low-income patient who truly wants to get better.

Every doctor I’ve ever seen offers a sliding scale, every pharmacy I’ve been to is willing to accept drug discount cards or match prices.  When a specialized clinic offers no services through insurance carriers and won’t allow patients to buy their vitamin supplements elsewhere, it starts to seem that the center is more concerned about the bottom line and less about the patient.  If someone really had a cure for fibromyalgia and chronic fatigue syndrome, why wouldn’t they take this cure to the FDA for approval, so it would be available to patients all over the country through every doctor?  When we hear about people going to private clinics which treat cancer with apricot kernels and laetrile and hemp oil, we feel pity for the patients, knowing they’re about to get ripped off.  We know that none of these private treatment centers have ever offered a cure that actually works, and that they just prey on an individual’s last shred of hope.  These types of private cancer treatment centers aren’t even allowed to set up shop in the United States because of their bad reputation, and maybe it’s time the FDA took a look at the Fibromyalgia and Fatigue Center, too.  The Mayo Clinic will see me for free, if I walk up to their door and ask for help.  They know their primary purpose is helping sick people get better.  The pharmaceutical companies will provide medications to me for free if I demonstrate financial need, because their product was put on the market for the purpose of helping people.  When a private clinic only accepts patients who can pay, and won’t allow the FDA to investigate their special “supplements”, I think it’s a warning sign to seek help elsewhere.  Oh, I did go check out the “Testimonials” page on the FFC website, just to see what was written, and they offer ONE testimonial.  It isn’t even written by the patient, but by her husband, who’s so relieved that since receiving treatment, his wife can again do laundry, clean the house, put dinner in the crock pot, and go to church.  Wow, maybe the woman wasn’t sick at all, maybe she was just sick of such a boring life under her husband’s thumb.  With Fibromyalgia and Fatigue Centers in many major cities, all they can offer is one questionable testimonial?

The Fibromyalgia and Fatigue Center is run according to the medical teachings of Dr. Kent Holtorf, who claims he once had CFS himself and was cured (if you search for the illustrious Dr. Holtorf, you’ll find him mentioned on QuackWatch.org).  I believe in turn, Dr. Holtorf follows some of the teachings of the infamous Dr. Jacob Teitelbaum, who’s known to just about every FMS and CFS patient.  Even I paid $75 many years ago to have a preliminary treatment report written up for me by Teitelbaum, and the result was about 40 pages listing vitamin supplement after supplement, and telling to me to stop eating about a hundred different foods, and suggesting I start taking a handful of different hormonal supplements and tricyclic antidepressants.  I showed it to the Internist who was treating me at the time and she just laughed at it.  When I tried to see about taking the vitamins that were recommended, they would have cost over $500 for the initial supply.

In short, the world is full of scams, and there are some really great doctors out there who don’t hide behind the walls of a private clinic dishing out proprietary vitamin blends to gullible patients desperate for a cure.

UPDATE:  I just found another unglowing reference to Dr. Holtorf while reading a message board:  “I just spent thousands of dollars at the Holtorf center for almost a year and just got more sick.”

Posted by Leigh-Ann on 05/25 at 01:28 AM
Tired Girls • (0) Comments • Permalink

Sunday, May 24, 2009

Is your significant other involved in your healthcare?

My partner also has fibromyalgia, and for the past two years we’ve been seeing the same pain-management doctor.  We always have our appointments one after the other, so we get called into the exam room together and we each just sit and listen while the other has her appointment.  It works out well because not only do we each occasionally remember something that the other has forgotten, it gives us each the chance to take mental notes on the day’s appointment.  At first, the doctor sternly warned us that he didn’t want us talking back and forth during the appointments, and that he’d still need to treat us as separate patients, but he got over that in a couple of months—now he just chats freely with the two of us, and we still manage to stay on track and get everything covered.  My partner has heard everything I’ve ever told the doctor, and vice versa:  there are absolutely no secrets between us regarding our health care.

About six years ago, I started to see an internist; she was the first person to diagnose me with fibromyalgia, as well as the first person to prescribe opioids.  She was a great listener and I thought she was a great doctor, but her office management was a disaster.  She was chief of staff at a nearby hospital and was always two hours late for her first patient of the day, and too many patients were crammed into schedule.  As a result, you knew that you’d be sitting in the waiting room for three hours or more, watching a small TV with broken colour that only displayed shades of green.  Nevertheless, I stuck with that doctor until her office made a policy change:  unrelated individuals were no longer allowed into exam rooms with patients because of possible HIPPA violations.  The first time we visited after this policy went into effect, the office staff physically stopped my partner from going into the exam room with me, and forced her to sit in the waiting room.  I asked if she would be allowed in if she was my sister, or my mother, and they said Yes.  I asked if a man would be allowed in if I claimed he was my husband, and they said Yes.  The discrimination just blew me away.  It was the last time I ever went to that doctor, because I want my partner to know what’s going on with my health, and I don’t want to withhold any secrets (either intentionally or inadvertently).  I like having the second set of ears and eyes with me, because my memory isn’t perfect, and my partner might have observations about me that I’m not aware of.  That doctor closed down her office shortly afterwards and she went into teaching, so the stupid policy probably went with her, but it still rankles me in memory.

I’m always saddened when I hear of couples where one is sick and is trying to keep the news from the other.  I’m always horrified when I hear of couples where one is sick and only the spouse/parent/child has been informed, so the sick person doesn’t even know their own diagnosis!  I don’t need anyone to protect me, and I want my relationship to be built on honesty.  Whenever I’m at the doctor, my partner isn’t just welcome to be there, she’s pretty much required to be present.

Posted by Leigh-Ann on 05/24 at 07:48 AM
Tired Girls • (0) Comments • Permalink

My current treatment plan

I post here so sporadically that I realize it’s probably impossible to follow the exact twists and turns of my treatment plan for FMS.  So, I’ll try to update periodically and write about what I’m taking, and more importantly, whether or not it’s working.

I’ve been under the care of a board-certified physiatrist for about two and a half years, and I have an appointment with him once a month.  At each appointment I fill out a form listing all medications I’ve taken in the prior month (including OTC meds, and those prescribed by other doctors, like my endocrinologist).  I also rate my overall pain levels, try to evaluate whether I feel better or worse than the prior month, etc.  The doctor monitors things like my heart rate and blood pressure during each visit, and I’m required to have an EKG a couple of times a year.  I’m also subject to random drug tests, and have to have at least one per 12 visits.  My prescriptions are only written for a 30 day supply, and I’ve never lost one or needed an early refill.  I actually often use less medication than I’m prescribed… I try to be sensitive to how I feel vs. just taking the meds blindly.

My pain-management doctor currently prescribes:

15mg oxycodone 3x/day
20mg Cymbalta /day
1mg lorazepam as needed for sleep
.125mg - .25mg triazolam as needed for sleep

My Cymbalta dosage is extremely low, but it seems to be effective.  It’s easy to taper from such a low amount, and when I do I quickly notice an increase in my anxiety.  I don’t think such a low dose has any impact on my pain levels, unfortunately.  I’ve been up as high as 60mg Cymbalta per day and did well on it (it definitely reduced my overall pain level), but it’s just too expensive to stay on that dose (about $200/month).  Right now I’m just using up free samples from the drug reps, and when those are gone, I think I’ll end up off Cymbalta for the foreseeable future (perhaps a chance for me to try reboxetine again).  Oh, the higher dose of Cymbalta was definitely causing some daytime sedation, too.  Last summer I was taking about 40mg of Cymbalta and 30mg of methadone per day, and when I tapered off both (I stopped them both at the same time to enter a drug trial), the lack of daytime sedation was very noticeable.  Methadone is a very effective and cheap drug (literally less than $20/month), but the side-effect profile eventually made it rather intolerable (nausea, constipation, blech).  I also don’t take Provigil anymore, because I just don’t seem to have the daytime fatigue issues that I once did.  I make an effort to sleep as much as I feel I need to, even if it’s 12 hours a day, and I think it gets me to a point where I’m actually having restorative sleep like a normal person.  I can say with absolute certainty that the more sleep I get, the less pain I have.

The physiatrist is limited in what he can do for me because of my financial constraints.  Oxycodone works fairly well for my pain and it’s cheap (about $40/month), although there’s more a pain roller-coaster than I’d have on a longer-acting drug (like Oxycontin or Duragesic, the latter being my preference if money was no object).  I know I’m better off than so many people who are stuck with severe pain and doctors who prescribe vitamins and OTC supplements, and I can’t fault the doctor for my less-than-perfect treatment plan.

I also see an endocrinologist for my Hashimoto’s, and keeping my thyroid hormones under control can make a huge difference in how I feel.  I take Cytomel, 25mcg/day, and Synthroid, 125mcg/day.  You can see how my Hashimoto’s has progressed in the last six years just by looking at my meds—I started on 10mcg of Cytomel and 75mcg of Synthroid (at one time, I was only on Synthroid).  I’d be interested in switching to Armour, but I hate to mess around with something that seems to be working.  Thyroid disease can so easily mimic fibromyalgia/chronic fatigue that I really want to stay on top of the thyroid problems and eliminate as many symptoms as possible.

That’s pretty much it.  I take vitamins—selenium for thyroid, and magnesium for FMS—and sometimes take Advil (headaches), Sudafed (headaches), or Benedryl (allergies).  I report all of them to both my physiatrist and my pharmacist.  I love seeing the same pharmacist all the time, and having a good relationship with her—she seems genuinely concerned about our health issues and is always ready to answer questions (or gossip).  It’s also a second set of eyes watching for drug interactions or other problems.  Exercise is tough because of the risk of post-exertional malaise (the problem being that you never know if you’ve overdone it until the PEM hits, and then you’re down for the count for about a week, waiting to recover).  I do what I can, though, whether it be walking outdoors or cycling on the stationary bike.  I’d love to be able to run again—I loved running—but that’s not in the cards right now.  Even taking a tiny jog (seriously, I jogged about a block), left me in bed for days.

If you feel so inclined, please let me know what works for you.  I could write a blog entry about what hasn’t worked, but oh, we’d be here a long time!

Posted by Leigh-Ann on 05/24 at 06:11 AM
Tired Girls • (0) Comments • Permalink

Saturday, May 23, 2009

FMS and unexpected weight loss

One common side-effect of fibromyalgia is weight gain.  Not only is it a consequence of a number of medications (Lyrica and the tricyclic antidepressants are big offenders), but it can be caused by the disrupted sleep which is the hallmark of FMS.  Slowed metabolism, insulin resistance… it all leads to extra pounds that seem to come out of nowhere.  I’ve certainly dealt with this problem over the past few years, and by 2007 I weighed the most I’d ever weighed in my life.  I couldn’t attribute it to anything I was eating, and I was getting exercise via swimming and yardwork, but I think my body was nevertheless trying to enter a state of hibernation.  I had a severe fibro flare in January 2008, and while I would have assumed something like that would make me even heavier, it’s done the opposite: for the past year I’ve had weight loss which is as inexplicable as the weight I’d previously gained.  Part of the problem has been chronic low-grade nausea, causing a lack of appetite, but I’ll admit that I spent most of last August in bed either sleeping or eating vast quantities of ice cream (the only thing that appealed to me at the time), and the pounds still kept slipping off.  In October I found out that my thyroid was pretty much dead (I had a TSH of 77), so all the weight loss came while I had a non-functioning thyroid gland.  That’s not how metabolism is supposed to work (just ask Oprah).  Today, I weigh less than I have in 12 years… I’m forced to spelunk through the closet to dig for clothes I haven’t worn since I moved to Las Vegas (clothes that a more organized person would have long ago given to charity).  It’s kind of exciting to have a whole new wardrobe, and I can’t deny I like being thin and having flat abs again, but otherwise it’s bewildering.  I keep think the weight loss will stop, but it doesn’t… another 3 pounds this month, after 4 pounds the prior month.  I’ve had so much blood work over the past year (I probably had at least two dozen blood draws for very complete lab tests) and there’s nothing obviously wrong with me except the thyroid issue, so I have to assume it’s nothing to worry about.  I haven’t had a new thyroid antibody test because of the expense, but I’m looking for other signs of Hashitoxicosis and so far, all is well.

I know sudden weight loss often happens with CFS patients, but as that isn’t my specific diagnosis, it wasn’t what I expected (I do believe, as many doctors do, that CFS/FMS are the same illness manifesting in different ways).  If you find this entry via a search engine or otherwise happen to stop by, what have been your experiences with weight gain/loss as a result of FMS/CFS?  Have any specific medications caused you to lose or gain?  I think my clinical trial of Reboxetine may have been a metabolism-booster, but I’ve been off that med since the trial ended in February, so I can’t hold it responsible for what’s going on now.

Posted by Leigh-Ann on 05/23 at 09:51 PM
Tired Girls • (0) Comments • Permalink

Friday, May 22, 2009

Laura Hillenbrand follow-up

I recently posted a link to Laura Hillenbrand’s New Yorker article, A Sudden Illness.  In the article (which took her 18 months to write), Hillenbrand does a great job of describing the type of fatigue experienced by people with fibromyalgia and chronic fatigue syndrome.  The New Yorker article was published in 2003, and I was really curious as to how she was faring in light of her success writing the book, “Seabiscuit”.  After creating a best-selling book and earning money from movie rights, Hillenbrand should be in a position where she has no financial concerns and can get the best treatments available.  This also means she would no longer need to “have” CFS if she was just using it as an excuse to be lazy or to get attention, right?  It took me quite a while to find any updated information about her, indicating she was keeping a low profile.  She wasn’t in attendance at the recent unveiling of the new Seabiscuit postage stamp (but her parents were there), so that also seemed to be an ominous sign.  In the end, the best I could come up with was an interview she gave to a Baltimore newspaper in 2006.  At that time, she was able to receive visitors with a lot of prior planning and preparation, but she wasn’t able to leave the house regularly or to live a life which could be considered “normal”.  Hillenbrand felt she was finally starting to recover from the stresses of writing “Seabiscuit”, but still didn’t see a light at the end of the tunnel regarding her illness of almost 20 years.  Here’s a brilliant, beautiful woman who has enough money to travel the world, who receives invitations to attend events like the Kentucky Derby, who loves horses and riding, and who has every reason to be leading a full and eventful life, but she can’t because of her CFS.  Let this be another lesson for the envious who think a diagnosis of CFS or FMS is an invitation to laze around and do nothing: no amount of money, success, or desire can override a body that just doesn’t work properly.  Just because we’re not bleeding out or convulsing or comatose doesn’t mean we’re not sick:

Bethesda Magazine:  Brave Hearts

Posted by Leigh-Ann on 05/22 at 06:21 AM
FMS News, Hot Off the Press • (0) Comments • Permalink

Wednesday, May 13, 2009

Amazing article about one person’s experience with CFS

I can’t believe it’s taken me 6 years to find this incredible article from the New Yorker, ”A Sudden Illness”.  In it, writer Laura Hillenbrand talks about her experience with chronic fatigue syndrome, from the moment of onset to the present (which at the time, was July 2003).  It’s really tragic and horrific and familiar, and I think I might send it to a couple of family members to give them some insight into what I mean when I say my legs are weak, and that I have trouble climbing stairs.  While I’m so glad I never experienced Hillenbrand’s mouth sores, and severe vertigo, other aspects of her story are what I deal with every day.  I need to go see if she has a blog or if there’s any update on her condition since she wrote the article, because she’d been sick for 14 years when it was written, and it didn’t seem like she was headed towards any sort of permanent recovery.

Posted by Leigh-Ann on 05/13 at 06:10 PM
Book Reviews • (0) Comments • Permalink

Tuesday, May 12, 2009

CFS/CFIDS/ME Awareness Day… oh, I’m aware

Today was National CFS/ME Awareness day.  I don’t know if anyone was aware of this other than those of us who have CFS/ME/FMS.  We spent the day traditionally, in bed exhausted but unable to sleep, and later nauseous with a touch of vomiting.  I’m glad this special day doesn’t require any traditional meals or cooking, because I have neither energy nor appetite.  The one good thing to come out of this day is CFIDs.org’s ”25 Random Things about CFS” list, modeled after the famous “25 Things About Me” meme which went around Facebook.  I think my favourite is #7, “The most profound and often best way to distinguish CFS from other conditions with similar symptoms is what’s known as “postexertional relapse” or “postexertional malaise.” This refers to a return of all symptoms after even minimal physical or mental exertion. Helping a child with homework, making a trip to the post office, preparing a simple dinner for the family are all things that can send CFS patients back to bed for hours, days or even weeks. This is often a huge contrast to their pre-illness capacity for activity”

So take that, you naysayers who laugh and mock when I complain that reading stressful emails tires me out.  It does, and smart people know it.  If you’re a smart person, read the 25 things to make sure you’re in tune with the latest research and findings.

Posted by Leigh-Ann on 05/12 at 11:24 PM
FMS News, Hot Off the Press • (0) Comments • Permalink

Wednesday, March 25, 2009

IACFS/ME Conference in Reno

Last week saw leading researchers who study Chronic Fatigue Syndrome and Myalgic Encephalomyelitis gather in Reno to discuss their latest findings and theories.  It’s a far cry from twenty years ago, when money the NIH was supposed to use to study CFS was just treated as a joke and diverted elsewhere.  Now there are multiple conventions held all over the globe, and it’s reassuring to know that so many medical professionals are making it their priority to find a cure (or at least, an effective treatment), for CFS/ME.  The conference was open to patients, so I’m still waiting for reports to trickle in about discussions and findings, but the agenda was so thorough that there’s got to be some good news amongst all the tech talk.  If you attended the conference or have links to sites discussing it, please post them in the comments!

Posted by Leigh-Ann on 03/25 at 11:41 PM
FMS News, Hot Off the Press • (0) Comments • Permalink

More good news about Xyrem

Flippy and I have been hoping to one day try Xyrem to see if it helps alleviate our FMS symptoms.  All the clinical study data looks fantastic, and it’s available to be prescribed off-label, but it still bears the stigma of its former self: the infamous, unregulated supplement “GHB”.  This month’s issue of JAAPA features an article called, ”Sodium oxybate improves symptoms of fibromyalgia”, so it’s great to see that Xyrem is at least being discussed in conventional medicine circles.  I think there’s still a long way to go in terms of figuring out proper dosing, and it would great great if the medication could be tweaked a bit to reduce side-effects like daytime drowsiness, but I think in a decade Xyrem will be in common use.  I know I feel immensely better on those rare days when I sleep properly, so it stands to reason that Xyrem could be a bit of a miracle cure.

Posted by Leigh-Ann on 03/25 at 11:20 PM
FMS medications • (0) Comments • Permalink

Friday, March 20, 2009

When concern turns to bullying

I’m still surprised that I have to write this blog entry, but I’ve joined the ranks of millions of other FMS suffers who have unsupportive/judgmental friends and family members.  They tell me they “believe” my diagnosis of FMS, and then accuse me of showing up to family events “high” on my medication (I was actually *not* “on something” at the occasion in question, I was actually in a great degree of pain and I remember desperately wishing we could hurry up and get home).  They accuse me of having fatigue because of the drugs I take, whereas the opposite is true:  my pain causes fatigue, and during the window of time my pain medication works, I’m out of bed, outside, running errands, doing yardwork, etc.  It’s frustrating to be judged by people who rarely ever see me, and who are basing their assessments on their own experiences with drug abusers (or as drug abusers).  I’m not, and have never been, addicted to anything.  I have physical dependency on a few of my medications, which is normal, but I’m able to safely taper off them as necessary (and I have tapered them, many times).  People develop physical dependency on anti-depressants, so it’s not just something which happens to people taking pain medication.  I’ve never run out of medication early, I’ve never lost a prescription.  I’ve never consumed my medication and alcohol at the same time.  Back before I did take medication, I would have an alcoholic beverage approximately two or three times a year, and never have I had more than two drinks in one sitting.  Well, that’s not true—when I was about 23 I had three Long Island iced teas with dinner and got so disoriented and nauseous that I ended up needing to go home to lie flat on the floor.  I never did that again.  The concept of being “high”—of being mentally impaired by medication—is completely foreign to me.  I’ve never tried any illegal drugs.  People are always surprised to find out that when they see me, I’m on large doses of prescription pain medication because they tell me I seem perfectly normal.  I don’t just seem normal, I am.  When my pain is controlled, I’m almost able to believe I could live a normal life.

I’m not sure why the anti-pain medication brigade has suddenly become so vocal (or so nosey), but their “concern” quickly turned into harassment.  I received an anonymous message via my eBay account supposedly quoting “the Mayo Clinic”, saying that exercise was the best treatment for fibromyalgia, and suggesting physical therapy.  I’ve had two prescriptions for PT, which I welcomed, but it costs $60 per session, and you need to have at least 3 to 4 sessions each week.  I wish I could afford PT, but it’s impossible.  A month of pain medication costs $40, a month of physical therapy costs over $400.  If someone donated physical therapy services to me I’d show up every day, but I don’t have the money for that sort of luxury treatment.  So, I’m totally supportive of the theory that exercise is helpful for FMS sufferers, but it would have been nice if the anonymous tipster had sent accurate information.  The quote I was sent, attributed to the Mayo Clinic, was actually a quote written by someone who calls themselves “Mikey the Humming Mouse”, and was from a BBC wiki-type website called “The Hitchhiker’s Guide to the Galaxy”.  That’s about as far from the Mayo Clinic as you can get, I think, seeing that the author’s areas of expertise include “Really Nasty Diseases” and “Sea Monkeys”.  The Mayo Clinic does recommend exercise as a form of self-care, but tops on their list of suggested lifestyle changes is to “avoid stress”.  Being randomly attacked by interfering, rude, and condescending family members is pretty stressful, and I’ve been in a constant flare-up for the past 4 days thanks to the abuse.  It’s pretty tough to believe people are trying to be helpful or that they just want the best for you when they deliberately make your symptoms worse.

Reading FMS message boards, it’s very common for people to have to cut certain family members and friends out of their lives when those people aren’t supportive or understanding.  If you’re hounding me and making accusations, you’re making my symptoms worse and you’re not worth it to me.  Sometimes it’s surprising to find out who is a bully.

I want to give props to my own “blood relatives” who’ve been really good to me over the course of my illness.  The “family” I’ve been having trouble with isn’t my own, and as I actually have no legal relationship to them, I probably shouldn’t have called them that.  They aren’t “friends”, either, so I’m not sure how I’d describe them.  Regardless, my own family has been good about my illness, to the point of worrying that I don’t get enough care.  My mother recently suffered a back injury and is having trouble staying pain-free despite her very powerful medication, so she knows how pain can be debilitating.  She’s also already finding out about people who think you’re healthy because you “look fine”.  The ranks of armchair physicians runneth over.

Posted by Leigh-Ann on 03/20 at 04:56 AM
Tired Girls • (0) Comments • Permalink

Monday, January 26, 2009

This blog isn’t abandoned

In case you’re just stopping by for the first time, and noticing I haven’t written in a few months, and wondering if this blog is defunct, let me assure you that it isn’t.  Tired Girls is alive and well, at least, as alive and well as I am, and I intend to continue to post periodically (i.e., whenever I have something useful to say).  For the most part, life has stayed the same and treatment has stayed the same, so there hasn’t been much to update.  Please check back now and again if you’re so inclined, because you’ll be the first to know when something exciting happens!

Posted by Leigh-Ann on 01/26 at 09:23 PM
Tired Girls • (0) Comments • Permalink

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 • (3) Comments • Permalink
Page 1 of 5 pages  1 2 3 >  Last »