Saturday, August 12, 2006

Living with Fibromyalgia

I was pretty excited to see the book, Living With Fibromyalgia at Amazon.com, because it’s written by a Las Vegas doctor, Dean Mondell.  My endocrinologist gave me a referral to see Dr. Mondell a few years ago, but I wasn’t able to afford the appointment at that time and never followed up.  I thought this book would be a good, inexpensive way for me to find out a bit about Dr. Mondell’s attitude towards FMS, so I’d know if going to see him now would be worthwhile.  I don’t want to waste another $600+ dollars like I did at the nearby “pain specialist”, only to be told that I should take vitamins.

The quick version of my review is that Dr. Mondell isn’t a disappointment, but the book sort of was.  It’s a book about attitudes towards fibromyalgia, and is aimed at people who have unsympathetic family, employers, etc.  It’s also aimed at people (like me, ahem), who try to fight off the FMS and who avoid admitting that they aren’t as strong or as healthy as they once were.  I guess you could say that the book tells friends and family, “Hey, this person has a real illness!  Be sympathetic!”, and it tells people like me, “Hey, have a nap!” It’s an excellent book to have on hand if you worry that people around you don’t take your illness seriously, and it gives tips on how to explain your limitations to others.  It also has advice for friends and family on how to help and be supportive.  Most of all, it tells stressed out people like me that if I let the FMS frustrate me, I’ll just make the FMS worse.  I reluctantly concede that’s probably true.

As a potential patient of Dr. Mondell’s, I would have liked the book to have talked more about treatment options, but in fairness, that wasn’t the book’s intention.  Treatment options might have dated the book, too, so as it now stands it’s a pretty timeless and helpful tool for dealing with chronic illness.  It did skim over some treatment protocols, but nothing in depth.

After reading this book, I know that seeing Dr. Mondell is definitely worth a shot.  It will have to wait a couple of weeks because of other priorities, but I’ll definitely call his office on Monday to schedule an appointment for September.

Posted by Leigh-Ann on 08/12 at 09:35 PM
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More Cymbalta, more shoes

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

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

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

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

Posted by Leigh-Ann on 08/12 at 09:20 PM
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Monday, August 07, 2006

Discontinuation syndrome

A story appeared on the newswire today about the possibility of anti-depressants causing withdrawal symptoms.  All around the word, tens of thousands of people simultaneously muttered, “No duh!” at the news.  Anecdotes about Prozac withdrawal have been around for at least a decade, and websites like Crazy Meds have long existed to help patients cope with the side-effects of being on, and getting off, anti-depressants.  Anyway, here’s the article if you missed it… I’ve bolded a couple of the most ridiculous sentences:

Antidepressants Prove Addictive to Some

Associated Press

By MATT CRENSON , 08.06.2006, 12:43 PM

When Gina O’Brien decided she no longer needed drugs to quell her anxiety and panic attacks, she followed doctor’s orders by slowly tapering her dose of the antidepressant Paxil. The gradual withdrawal was supposed to prevent unpleasant symptoms that can result from stopping antidepressants cold turkey. But it didn’t work.

“I felt so sick that I couldn’t get off my couch,” O’Brien said. “I couldn’t stop crying.”

Overwhelmed by nausea and uncontrollable crying, she felt she had no choice but to start taking the pills again. More than a year later the Michigan woman still takes Paxil, and expects to be on it for the rest of her life.

In the almost two decades since Prozac - the first of the antidepressants known as SRIs, or serotonin reuptake inhibitors - hit the market, a number of patients have reported extreme reactions to discontinuing the drugs. Two of the best-selling antidepressants - Effexor and Paxil - have led to so many complaints that some doctors avoid prescribing them altogether.

“It’s not that we never use it, but in the end I will tend not to prescribe Effexor or Paxil,” said Dr. Richard C. Shelton, a psychiatrist at the Vanderbilt University School of Medicine. Shelton has received grant support from the makers of both drugs and consulted for a number of other pharmaceutical companies.

Patients report experiencing all sorts of symptoms, sometimes within hours of stopping their medication. They can suffer from flu-like nausea, muscle aches, uncontrollable crying, dizziness and diarrhea. Many patients suffer “brain zaps,” bizarre and briefly overwhelming electrical sensations that propagate from the back of the head.

Though not exactly painful, they are briefly disorienting and can be terrifying to patients who don’t know what they are experiencing. There are case reports of people who have just quit antidepressants showing up in hospital emergency rooms, thinking they are suffering from seizures.

Toni Wilson certainly didn’t know how unpleasant going off Zoloft could be when her doctor recently switched her to Wellbutrin, telling her that the new drug would “take the place of” the old one. The two antidepressants actually work on entirely different neurochemical systems, so going straight from one to the other was equivalent to quitting Zoloft cold turkey.

“After about three days I felt real anxious and irritable,” the Kansas woman said in an e-mail message. “I would shake, not eat much, it felt like little needles in my body and head.”

Cases like Wilson’s would be virtually nonexistent if physicians took more care in weaning their patients off antidepressants, said Philip Ninan, vice president for neuroscience at Wyeth, the maker of Effexor.

“The management of discontinuation symptoms is relatively easy if you know about it,” Ninan said, and noted that Wyeth had made efforts to educate both physicians and patients.

Yet surprisingly few doctors know enough about SRI discontinuation to manage it effectively. A 1997 survey of English doctors found that 28 percent of psychiatrists and 70 percent of general practitioners had no idea that patients might have problems after discontinuing antidepressants. Awareness may have increased since then, but the phenomenon is so little studied that no one has done the necessary research to find out.

The condition’s prevalence is equally mysterious. Studies put the rate at anywhere from 17 percent to 78 percent for the most problematic drugs.

So little is known about it that researchers aren’t even exactly sure what causes the symptoms. It may be related to the fact that the brain chemical affected by most of the antidepressants on the market today, serotonin, does a lot more than regulate mood. It is also involved in sleep, balance, digestion and other physiological processes. So when you throw the brain’s serotonin system out of whack, which is essentially what you’re doing by either starting or discontinuing an antidepressant, virtually the whole body can be affected.

Generally the drugs that are metabolized most quickly cause more severe symptoms, Shelton said. Effexor, which breaks down in a period of hours, is one of the worst SRIs in that regard; Prozac, which has a half-life of about a week, is considered the best.

Some doctors have been able to minimize withdrawal symptoms in patients who are quitting Effexor or Paxil by gradually switching them over to Prozac, then tapering them off the more easily discontinued drug.

Critics of the pharmaceutical industry complain that drug companies downplay the severity of drug discontinuation symptoms. The prescribing information companies provide to doctors warns that patients occasionally experience mild symptoms when they stop taking SRI antidepressants, but imply that tapering off the medication can prevent problems. Medical journals describe the ill effects of going off the drugs as “mild and short-lived,” and usually avoidable if the dose is tapered.

“I don’t think they’re difficult to go off,” said Alan Schatzberg, chairman of the department of psychiatry and behavioral sciences at the Stanford University School of Medicine. “The vast majority of people aren’t that sensitive.”

Schatzberg recently chaired a Wyeth-sponsored panel of physicians that offered guidelines for how to manage “antidepressant discontinuation syndrome,” the preferred medical term for what a layperson would think of as withdrawal. He has also served as a consultant to several other pharmaceutical companies.

Terms like “antidepressant discontinuation syndrome” demonstrate the pharmaceutical industry’s efforts to downplay the problem, charged Karen Menzies, an attorney who has been involved in litigation over the phenomenon.

“Withdrawal is the word that is used in Europe,” she said.

In December 2004 Britain’s drug regulatory agency issued a report that warned that all SRIs “may be associated with withdrawal” and noted that Paxil and Effexor “seem to be associated with a greater frequency of withdrawal reactions.”

But drug companies insist antidepressants can’t cause withdrawal because they are not technically addictive. Even so, many patients who have gone through the experience say it feels like withdrawal to them. Some can’t work, drive, socialize or do other everyday things for weeks.

“You just feel awful,” said a New York children’s entertainer, who asked not to be named for professional reasons. He has taken a small dose of Effexor for eight years rather than suffer through the withdrawal experience. But he said the inconvenience is worth it for the benefits the drug provided him when he needed it.

Taking SRIs indefinitely is not an attractive option for many patients because it means putting up with unpleasant side-effects such as weight gain and sexual dysfunction. For women who want to have children it’s an especially risky choice; researchers have documented withdrawal in newborns whose mothers were taking antidepressants, and some SRIs have been linked to birth defects.

Having to keep taking Paxil makes O’Brien angry because she feels at the mercy of GlaxoSmithKline, the company that makes it.

Though a GSK spokesperson said the symptoms associated with discontinuing Paxil are generally mild and manageable, in O’Brien’s eyes the company is profiting by having hooked her on one of its drugs.

“If they ever did quit making Paxil, I’d be in so much trouble,” O’Brien said. “What really makes me mad is if I can’t get off it, why am I paying them? They should be paying me.”

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

I don’t think stories like this should scare people who might need anti-depressants.  I just want people to be aware of what they’re getting into, and to know that taking these drugs involves a process of adjusting to them while starting them and while stopping them.  It’s not a task for the impatient, but it’s not impossible, either.

In a related story, the FDA approved generic Effexor (Venlafaxine Hydrochloride) today.  That’s welcome news for those of us who’ve paid $100+ per month for the brand name from Wyeth, although I don’t think the extended-release form will be available as a generic just yet.  No word on pricing, but the drug is supposed to start shipping immediately.

Posted by Leigh-Ann on 08/07 at 09:20 PM
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Sunday, August 06, 2006

Good shoes for sore feet

I don’t know if it’s FMS-related or not, but for the past few years I’ve suffered periodically with plantar fasciitis.  If you aren’t sure what that is, it’s a searing pain you get in the bottom of your foot, (usually the heel), and often when you first get out of bed in the morning.  It’s easy to treat but slow to heal, and can be a real bummer.  Who wants to exercise when every step makes your foot feel like it’s on fire?!

Luckily, Flippy found some great shoes for people with back problems, Earth Shoes.  People who owned the shoes seemed to love them, and many mentioned they were effective in treating plantar fasciitis.  So, Flippy and I both ordered a pair of athletic shoes from Zappos, as those are the type of shoes we wear 99% of the time when we leave the house.

At first, the shoes were a tad uncomfortable.  They had a very strong arch, and it felt odd to have so much support after going barefoot or wearing flip-flops all the time.  They also have a “negative heel”, meaning that the heel of the shoe is lower than the toe.  Until you get used to the sensation, it feels like you’re tipping backwards slightly.  After a few wearings, however, we definitely noticed an improvement in how we feel when we’ve got them on.  For Flippy, putting on the shoes gives her relief from back pain, so they must help improve posture.  For me, the padded sole plus the strong arch support seem to help keep the plantar fasciitis in check.  Best of all, the slight incline of the shoe means that you get a bit of extra exercise when you walk, and I think our legs appreciate the difference.

I’m about to go order myself a second pair of shoes, this time a “casual shoe” for wearing with jeans:  Heritage 3.  They aren’t the most beautiful shoe, but I’m so used to wearing tennis shoes all the time because my feet hurt that I think anything other than white leather will look like I’m dressing up!  I hope these ones will be as comfortable as the athletic shoes.

Posted by Leigh-Ann on 08/06 at 08:51 PM
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Modafinil / Provigil

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

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

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

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

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

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

Modafinil in Fibromyalgia Treatment

Study Shows Modafinil Reduces Fibromyalgia Fatigue

Modafinil Reduces Fatigue in Patients With Fibromyalgia

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

Posted by Leigh-Ann on 08/06 at 09:51 AM
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Saturday, July 29, 2006

Hashimoto’s Disease

While living in San Francisco a few years ago, I discovered the wonder of clinical trials.  Clinical trials not only meant free treatment for conditions a person might have, they often meant cash.  I got started in my first clinical trial when I answered a newspaper ad looking for people with symptoms of depression, and that’s how I ended up in an open-label study of Celexa.  I didn’t get paid, and only received free medication, but I was completely broke and would have otherwise not been able to seek treatment.  After Celexa, I participated in a trial of Gingko Biloba and Cordyceps mushrooms under the same psychiatrist, and this time I was given free medication as well as free bloodwork.  That bloodwork showed I had a low testosterone level, so I was given a testosterone cream to try.  I wouldn’t have ever thought to look for that problem if the bloodwork hadn’t found it.  Before we’d left San Francisco, Flippy and I had also been in paid trials for a new intra-nasal tetanus vaccine, and I think we were excluded from a trial regarding staph infections as the bacteria didn’t show up in our normal flora.  I thought it was pretty cool to get a free tetanus vaccine, free blood tests, and a check for $100.

(There were certain clinical trials I just couldn’t do, like one for Lasix which required a few days of staying in the hospital.  Even though it paid $600, I didn’t want to do anything so dangerous as to require hospitalization).

When we moved to Las Vegas, I again looked to clinical trials to meet some of my healthcare needs.  I found a trial which I think involved using zinc to treat breast cancer (it’s amazing what I can’t remember).  I didn’t have breast cancer, but they needed healthy volunteers to take a pill with a very low-level of radiation in it, which I was assured was completely safe.  Part of the screening was thyroid bloodwork, and I found out I didn’t qualify for the trial because I had Hashimoto’s disease.  I’d never heard of that before, but the doctor running the trial assured me it was nothing serious, but that my thyroid couldn’t risk being exposed to any radiation.  The short definition is that Hashimoto’s thyroiditis is an auto-immune disorder, wherein the body attacks its own thyroid and products thyroid antibodies.  Although my TSH and Free T3/T4 blood levels were normal, the presence of thyroid antibodies in my blood was not.

I liked the doctor running the trial (young, Canadian, and gay), and I asked if I could see him as my primary care physician—I could.  So, I started to see him for treatment for my depression, as well as for my aches and pains (which I would eventually learn were fibromyalgia).  He was good about giving me free Effexor from his sample cabinet, but never suggested that my aches and pains were anything other than “in my head”.  When I did some reading and found out that Hashimoto’s disease could cause symptoms of hypothyroidism, even with a normal TSH, I asked him if I could try taking T4 to see if it helped my overall discomfort, but he was very reticent to try that.  He discounted materials I brought him from Medline, saying he’d “read them later”, and basically just refused to try me on any thyroid replacement hormones.  That’s when I ceased to be his patient, and sought out an endocrinologist.  The endocrinologist felt my thyroid, said it was enlarged, and immediately put me on both T3 and T4 to stop the problem from getting worse.  He noticed I had quite a few symptoms of hypothyroidism, and he treated me based on how the symptoms resolved, not on what my bloodwork said.  I think I eventually got my TSH down to just slightly above zero before I noticed an improvement in some areas.

I currently take 10 mcg of Cytomel daily, and 75 mcg of Synthroid.  Without them, I’ve had severely dry, cracked skin, an abnormally low body temperature, and extreme sensitivity to cold.  Those are the things I’ve noticed which have resolved most dramatically, but I’m sure there have been other small changes as well.

Long story short, if you need medical treatment but have little money and no insurance, check out clinical trials.  They can be a way to get treatment and medication, especially for mental health issues like anxiety and depression.  Also, if you feel you have the symptoms of hypothyroidism, but your bloodwork turns up normal for your TSH/free T3/freeT4 range, you might want to have your blood checked for thyroid antibodies.  A “normal” TSH of 4, in the presence of antibodies, can be a sign that your thyroid is marching towards the shutdown mark, and replacement hormones can help prevent or slow that process down.

Posted by Leigh-Ann on 07/29 at 11:26 PM
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Tuesday, July 25, 2006

Cymbalta

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

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

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

Posted by Leigh-Ann on 07/25 at 08:38 PM
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Sunday, July 23, 2006

How did I get here?

I ask myself, “How did I get here?” about once a week.  Not in a, “How did I get to Las Vegas?” way, but in a, “How did I become a lumpy, exhausted old Ford Pinto when I was once a sleek and shiny Porsche Carrera?” Well, maybe not quite a Porsche, but when I was 30 years old I was going to school full-time, had a successful broadcasting career behind me, took care of a large house and yard, and exercised for at least an hour per day, sometimes two.  I was so physically fit that I had limitless energy, and could eat anything I wanted without fear of gaining weight.  My metabolism was as zippy as a fly buzzing around your head (yes, that’s pretty zippy).  One day, shortly after my 30th birthday, I woke up and I felt exhausted.  I figured I’d just slept poorly and would be able to shake it off, but was so beaten down by fatigue that I wrote the day off and spent it in bed.  The next day was the same, so I wondered if I had the flu (although I had no symptoms but fatigue and general achiness).  The lack of activity was mentally making me batty, but I had to spend another day in bed, then another, and my life was never the same again.  I can remember trying to force myself to ride my bike a few miles, a task which would have once been just a warm-up activity for me, and I couldn’t do it—I had to turn around and come home.  I felt so incredibly broken.

I’ve never been a person who likes to sit still, and I have little tolerance for “laziness”, so not being able to be as active as I knew I should be caused me a lot of mental anguish.  I never once thought that there was something physically wrong with me, and that I should see a doctor—for some reason I decided it was “all in my head”.  It felt like a battle of wills between my brain and my body, and I either forced my body to do what I wanted, or I beat myself up mentally when I couldn’t accomplish what had to be done.  I was sure it was just a willpower issue, which was a stupid way to look at things, but I didn’t have any perspective on the problem at the time.

Looking back, I’m sure my body and mind just reached their breaking points, although I’m not sure which specific incident might have set them off.  I was personally successful and enjoying achievement, but was living in the US as an illegal alien, had left my previous job after an unpleasant sexual harassment incident, and was living with a partner who tended to be emotionally abusive when she was angry.  She was often threatening to throw me out of the house or to call the INS when we argued, and while living with those threats became commonplace over the years we were together, they took their toll.  My eventual illness with FMS was the straw that broke our relationship, as my partner was angry about my lack of energy and initiative, and believed it to be some sort of rebellion, I think.  I remember she would get so angry at me if I’d put my head down and fall asleep with no warning, and she’d accuse me of finding her “boring”.  I tried to explain that I was just uncontrollably tired, but our relationship was past the point of trying to explain nuance (and I was probably rather defensive about my fatigue, too).  We broke up about 8 months later, in a nasty split which involved lawyers and a few years of litigation.  A doctor eventually diagnosed me with PTSD in the aftermath.  I thought it was pretty lame that I had PTSD because “someone was mean to me”, but medication for the problem made a huge difference, so I guess that doctor was correct.

Long story short(ish), I was diagnosed with depression and PTSD in 1999, and Hashimoto’s Disease in 2000.  I felt better emotionally, but still felt like crap physically, and finally in 2001 a doctor said the magic word, “fibromyalgia”.  I was so pissed off.  Fibromyalgia, in my mind, was just a medical word for lazy and whiny.  I didn’t want to have an imaginary illness, I wanted to have a real illness, the kind that could be treated and would be taken seriously.  I wanted to be normal again!  It’s definitely true that a large part of my battle with FMS has just been my attitude about it, something I’m still learning to deal with today.

I started this blog so I could write about all the doctors I’ve seen (good and bad), the treatments I’ve tried (good and bad), and other treatments which interest me but which I haven’t tested.  I also wanted to write about dealing with FMS without health insurance, which has been a challenge.  Mostly, I think I want to put something in writing that a friend or loved one of an FMS patient might see one day.  I hate that my illness leaves me feeling like death, yet looking perfectly healthy.  I hate knowing that at one time or another, many of my family and friends have wondered if I’m really sick, or if I’m just making excuses, because I look so normal.  I hate that I’ve gained weight that I seem to have no control over, especially because there are people close to me who just think I overeat or lack willpower.  I mostly hate not being in control, which is probably pretty obvious smile ... I wish I could beat fibromyalgia down by sheer force of will.

Posted by Leigh-Ann on 07/23 at 10:00 PM
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Thursday, July 20, 2006

The lab bill

I received my lab bill today, the one I referenced in the preceding entry.  As I’d mentioned in that entry, I went to a new doctor, and he unexpectedly required me to have blood work done before I could have my consultation.  I agreed, but also wondered what the lab bill would be, as I normally pay $125 via HealthcheckUSA.com for a complete workup.  I was horrified/stunned/furious when I found out today that Quest Diagnostics is charging me $353.35 for a basic metabolic panel, lipid panel, free T4, TSH, and CBC w/platelets!  Add that to the $20 “collection fee” the doctor’s office charged me, and these tests cost me $236.35 more than what HealthcheckUSA would have charged (after handling fees).  I also didn’t get any liver function tests or a Free T3, as would have been included for my $125.  I’ll be writing a letter of complaint to Quest Diagnostics, but in the interim, it’s so frustrating to be overcharged in such a random fashion.

The summary of my doctor’s visit is as follows:  I was charged $613.35 to be told to take 5-HTP to treat my problems.  The $20 B12 injection hasn’t made any difference that I’m aware of, although it did leave me with a sore arm.

Posted by Leigh-Ann on 07/20 at 08:22 PM
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Wednesday, July 12, 2006

New doctor

This is my first entry in this blog, which I set up to write about my life with fibromyalgia, chronic fatigue syndrome, Hashimoto’s disease, and no health insurance.  I don’t want to crowd my other “pet-themed” blog with medical issues, so I thought a second blog would be appropriate.  I want to be able to write about treatments I’ve tried, treatments which have and haven’t worked, treatments on the horizon, and general day-to-day suckiness of never knowing how I’ll feel when I get up in the morning.  This is my 10th year with the symptoms of FMS.

Before I start, a quick caveat and “cover my ass” moment:  I often self-medicate by buying medication over the Internet, and often go for years at a time without medical supervision.  I do not recommend you do this!  The reasons I’ve ended up doing this are many and varied, and I’ll write about them eventually, but under no circumstances should anything I write be construed as advice or a recommendation (unless I actually say it is one or the other).  I’ve been exceedingly grateful for the times I’ve had access to good doctors, but sometimes those opportunities are limited, and I’ve had to get by as best as can.  An example of this would be my Hashimoto’s disease/hypothyroidism:  when my endocrinologist suddenly left the country to care for his mother in South Africa, I didn’t have a doctor.  So, I used up all the Cytomel and Synthroid I had on hand, then I continued buying the same doses on the Internet.  Once a year, I ordered bloodtests online via Healthcheck USA, and then I compared the lab results to the lab results I have on file.  If I’d ever seen an anomaly I definitely would have sought out a doctor, but I generally found my TSH stayed consistent, and that was what I needed.  It was through this method I continued taking Effexor XR and Ativan as well, and I think I’ve been able to keep myself fairly stable for the past couple of years.

Unfortunately, since Flippy’s surgery, I haven’t felt very well and the extra physical labour has been tough on me.  I finally decided it was time to start seeing a doctor again, especially because someone advertising himself as a “pain management specialist” had opened an office in our neighbourhood.  I made an appointment for today, and filled out all the paperwork in advance.  I included a typewritten sheet outlining my FMS history, where I listed what doctors I’d seen and where, what I’d been diagnosed with, and what medications I’d tried.  At least two doctors I’ve been to in the past 7 years are no longer “in business” (I must be tough on them), so my medical records can be hard to dig up.  I assumed that a cover letter would help fill in gaps.  The purpose of my appointment primarly was to get refills of my Cytomel and Synthroid, to see about switching from Effexor to Cymbalta, and just to check to see if this doctor had any fibromyalgia suggestions.

The office visit was $125, payable in advance.  When I was taken to the exam room, I was told that the office required that I have an EKG, a full blood panel (TSH, liver, cholesterol, etc.), and a chest x-ray “to set a baseline”.  I knew I’d have to have bloodwork done at some point, if only to check my TSH, but I wasn’t very happy that I was being told I needed to have it done at their office.  I also didn’t like all the extras they required, just because we’re on a fixed budget.  They wanted $40 for the EKG, $70 for the chest x-ray, and $20 to collect my blood—they said the lab would bill me separately, but they didn’t know how much that bill would be.  I can tell you this—if it’s more than $105 I’ll be very angry, because that’s what the identical tests from Healthcheck USA would have cost me.  I was more or less forced to agree with what they wanted, as it was either that or leave, and I really needed my medication so I stayed.  I would have been nice if they’d told me when I made my appointment that so much extra would be required, as today’s appointment was suddenly about to cost $260, plus the lab fees, plus the costs of my medicine.

The office was very high tech, and the staff was very friendly and competent.  I saw two “medical assistants”, a physician’s assistant, and finally the doctor, but only after I’d had all my required tests done.  Unfortunately, the doctor really underwhelmed me, especially because the last few doctors I’ve had have encouraged me to speak up about my needs.  I told him that I’ve been on Effexor for the past seven years, off and on, and that I was interested in trying Cymbalta as I’d read that FMS patients have had good luck with it reducing their daily pain levels.  He said, “No, let’s just keep you on the Effexor and increase the dosage until we’ve maxed that out, and then we’ll see about trying something different.” I then explained to him that I can’t afford to “max out” a dosage of Effexor, and that the reason I go on and off the drug so frequently is because I develop tolerance to it, and can’t afford the increased dosage (at one point, I was taking $324 worth of Effexor every month).  He then reluctantly agreed to give me three months worth of Cymbalta, but then I had to insist on getting a month’s worth of Effexor, too, so I can taper down the dose so I don’t switch over “cold turkey”.  Again, he seemed a bit skeptical when I said that, which bugs me to no end because every general practitioner and internist should know that antidepressants cause bad withdrawal symptoms if they aren’t tapered.  It seems that no one ever knows but us patients.  He kept looking up information on his Blackberry, which was fine, but I was surprised that his knowledge about antidepressants was so limited.  He ended up giving a prescription for an intermediate-sized dosage of Cymbalta, not the lowest dosage, and that bothered me too—I’d prefer to be taking the lowest dose I can get away with, but I didn’t think I should keep arguing.

I then had to ask for my thyroid meds, which he was okay with, but he acted like he didn’t know what Cytomel was.  I also asked for Ativan, which helps me sleep properly (sleep is a big FMS problem), and he gave me a scrip for 30 pills.  Yippee, not.  My last doctor would give me 60 pills per month, with six months worth of refills, and that would last me for over a year.  I never take the medication every day, just when I need it, but I guess the new guy doesn’t trust me yet.

Finally, the doctor asked me what had worked for my fibromyalgia pain in the past.  I said the dirty word, “Oxycontin”, and his eyes grew wide.  He said, “We don’t want to get into giving you something like that every day, yadda, yadda, yadda...”, which I know, and I don’t want to take it every day because it makes me slightly nauseous, but it is the only thing which has ever given me full relief from pain.  I then asked him, “Are there any new treatments for FMS?”, thinking in my head about new anti-depressants being tested, medications like Provigil, etc., and his answer was “5-HTP and B12 injections.” Period.  That’s what the pain management specialist wants me to take for my Oxycontin-level pain, one 5-HTP pill per day ("whatever size they sell at the store"), and he wants me to have injections of 1cc of B12 per month, at a cost of $20 each.  I didn’t want to seem uncooperative so I agreed to the B12 shot, but they had to go get Flippy from the waiting room to make her pay the $20 before they’d do it!

The sum of the day was, I have prescriptions for 4 months of thyroid pills and 4 months of antidepressants, and a month of Ativan.  I also know my EKG is normal, my blood pressure is quite high (for me, not for an average person), and that the doctor’s x-ray machine is broken.  I feel such a let-down, I can hardly describe it.  I think it’s normal with FMS to be always hoping to find that magical person who will “fix” you, and even though I know that person doesn’t exist, I’ve found at three doctors who’ve come close.  Unfortunately, those three doctors are the ones who don’t practice anymore, or who’ve left the state, so I desperately want to find someone who’ll be proactive with me about my healthcare.  Not only is this the first doctor to try to deny my request to change antidepressants, he’s the first doctor to not give me any free samples, so it was an expensive day.  My one month of Effexor cost $108, and I don’t know what the Cymbalta will set me back.  I’ll find that out tomorrow.

Posted by Leigh-Ann on 07/12 at 08:35 PM
Tired Girls • (2) Comments • (0) Trackbacks • Permalink
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