Saturday, February 10, 2007

Damned if you do, damned if you don't, Part 2

Once again, I have found a medication that helps my symptoms, but does so in a way that makes it impossible for me to seek outside employment.

My new pain pills are a godsend.  Except that even backing them up to an hour or two before bedtime, they're still making me sleep till at least 9 AM.  Since it takes a while to get my muscles moving in the morning, and it takes me quite a while to commute anywhere on the bus, that means that I could not possibly take a job that starts before 11 AM -- noon if I need to go somewhere other than downtown. 

Most office jobs here start at 8 or 8:30, so if I'm not awake till 9, I couldn't even take a job across the street and get there on time.

I went through this with the experimental sleeping pills, too.  Even if I took them at 5 PM, the disabling side effects lasted till noon.  They put me to sleep within 15-20 minutes, so I couldn't have taken them earlier.  BTDT with the first sleep aid I was given in 1988 -- I backed them up so far that I was taking them at work, which resulted in Vickey having to make sure I got off the bus at the right stop, and pointing me in the direction of home (fortunately, I only had to walk in a straight line to get there).  Same thing with those, I was non-functional till noon even taking them at 4:45 PM.

Unfortunately, the Disability judge seems unable to process the notion that my doctor preaches with every RX: "all medication has side effects".  He can't conceive of a medication that makes you worse.  Just pop a pill and get back to work; don't make excuses that it's causing new problems.

But this is actually fairly common for CFS patients.  CFS affects your metabolism, so medications that rely on being metabolized at a certain speed don't work properly.  That results in unusual side effects.  As a result, many CFS patients are unable to take any prescription medication, which leads to the erroneous conclusion that there can't be much wrong with them since they're not taking a boatload of prescriptions -- when I went for my first SSDI exam, some people had a grocery bag full of prescription bottles.  I had one prescription (not even for CFS) and a bottle of vitamins; anything else caused me problems or simply didn't work at all.

This is yet another way that the experts are able to sort out true CFS from some of the lookalikes: weird reactions to medications are common in CFS but rare in the others.  But to the average doctor (or judge) who is not familiar with CFS, the notion that you cannot take medication sounds too bizarre to be true.

Friday, February 9, 2007

7 Years

Some people believe that your life changes every 7 years.  Certainly when I got up this date 7 years ago, I did not expect to be disabled and unemployable for the next 7 years.  But by 3 PM on February 9, 2000 I was jobless, and my health has never returned to a point where I could manage full-time employment.  I've been told it never will.

Have things changed in the past 7 years? 

There were a lot of days in 2000 that I woke up and immediately threw up.  That's changed, thanks to finding a doctor who didn't go for the easy answer of forbidding me to eat things I don't eat anyway; he listened and realized that the problem was that I didn't eat for 12 hours between dinner and breakfast and my stomach acid had nothing to work on.  We added two antacids to my bedtime routine, problem solved.

There were days in 2000 when I was puking my guts out non-stop thanks to medication that research has shown to be useless for CFS.  I've finally gotten away from doctors who think CFS is another name for depression and found someone who understands that you can't fix viruses with psych drugs.  You fix viruses by building up the immune system so that the body can vanquish them naturally.

There have been days in the past 7 years that I could not even sit up.  Now I can fairly consistently sit upright for about an hour before either the back spasms or the lightheadedness forces me back horizontal.  Some days I can even manage several hours at a time.

There was a long period when I was only able to work 5 minutes out of every hour.  Now I can fairly consistently work for 2 hours at a time.

For years, I slept only 2 hours a night due to pain (what I believe precipitated the relapse).  I progressed to sleeping 2 hours at a time before the pain woke me up.  Now, thanks to finally (last week) getting prescription pain pills, I'm fairly consistently sleeping 6-8 hours a night.  Not necessarily 8 hours consecutively, but most of it is now at night, instead of 2 hours between 5-7 AM, 2 hours between 9-11 AM, 2 hours between 1-3 PM....

For most of the last 7 winters, I've been down much of the winter with chronic sinus problems, a vicious spiral of infections sapping my already-tapped-out immune system and my immune system being unable to control the next infection.  If I'd had a job, I would've lost it for excessive absenteeism -- my business partner once counted that in one month, I had e-mailed her on 17 days that I was not even able to sit up because of my sinuses, much less accomplish any work.  This winter (knock wood), I've only lost a couple days to sinuses, and weather-related rather than infection.  To me, that says that my immune system is getting stronger.

I see small, but important, changes over the past 7 years.  But if my friends are correct that "your life changes completely every 7 years", I'll wake up tomorrow with all my health problems under control, ready to go back to work full-time.  Based on how I feel right now, I don't think that's going to happen.  But I'm more than ready for my 7-year change.

You could say, I have the 7-year itch.

Wednesday, February 7, 2007

Doctors/treatment get poor grades from patients

In a survey of over 1300 CFS/fibro patients, eFibro reports 22% rated the current treatment they are receiving as poor, 38% as merely fair, 30% as good, and only 10% as excellent.

You can read that as 60% of patients being basically dissatisfied with their treatment, which probably means that 60% of patients feel they’re not getting noticeably better, which is a pretty sorry statistic for Modern Medical Science, which likes to pride itself on being able to cure the most dreadful diseases.

Part of the problem is that the treatment of CFS requires thinking outside the box, which is not something that’s taught in medical school.

I spent several years getting worse at the hands of MDs – I couldn’t have even rated their treatment "poor", because treatment was basically non-existent (in the first 3 years of this relapse, I took medication for less than 60 days: I repeatedly had to stop a prescription within a few days because it made me sicker, and then was required to wait weeks or months till my next appointment to get the prescription changed because the doctor's office would not take a message). And then they wondered why I wasn’t getting better when I had no medication?!

It shouldn’t be a surprise to anyone, and especially not to doctors, that an untreated condition does not improve. Or that it gets even worse.

I finally gave up on that medical group (which advertised "innovative treatment", but didn't actually provide it) and went to a DO – osteopaths are a little better at creative thinking because of a slightly different school curriculum – and while he at least was open-minded enough to listen to me, he still didn’t have any answers that I didn’t already have myself. He was willing to experiment with prescriptions, but at that point, I’d deteriorated so far that this was like trying to dig my way out of a 50-foot hole with a teaspoon, so I’d have to rate the treatment as only fair because it wasn’t helping much; it certainly wasn’t getting me back to work. I needed drastic measures, and he didn’t have anything that could produce such spectacular results.

Then our local support group invited a guest speaker, a chiropractor who had become somewhat of an expert on CFS. Chiropractors get a very different curriculum than MDs and DOs, and this one hadextra training in nutrition to boot. He had an all-natural regimen that cost about the same as one prescription, and without the side effects. The 5 minutes I spent talking to him after the lecture is the only portion of my medical care in the past 7 years that I would rate as excellent, because it’s the part that did me the most good in the long run. He’s the only doctor among the dozen I’ve seen since 2000 who actually knew enough about CFS to do me some good. (For more information, a personal consultation, or to purchase the books and supplements, visit ) Most of them knew nothing, but were convinced that they knew more than I did and therefore refused to listen to me. (In each case, when I finally found someone willing to prescribe what I had asked for initially, I improved, while the things they prescribed instead of what I asked for made me sicker.)

Nonetheless, we’re approaching a quarter century since the Incline and Lyndonville epidemics started and 20 years since CDC applied the name CFS to the disease, and there’s still no workable treatment available to patients (there are some anti-viral treatments which are, unfortunately, only available through clinical trials in a very limited number of locations). 100% of patients should rate THAT as poor.

The most important question you can ask a doctor

Knowing the right question to ask your doctor

    Fact: A doctor in this country interrupts a patient, on average, in the
first 18 seconds of a visit.

A prominent surgeon waited about a minute and a half before issuing his
diagnosis to Jerome Groopman on his damaged hand. "He was dead wrong," says
Groopman, who got four diagnoses from six surgeons. "And these are big

    Fact: More than 15 percent - some say more than 20 percent - of medical
diagnoses are wrong. At least half result in serious injury or death.

Groopman tells of a woman who saw close to 30 doctors for a constellation of
ailments that gradually sapped the life out of her. She endured excruciating
pain and was down to 85 pounds. Her immune system was failing and she had
developed severe osteoporosis. All of them missed what was ailing her.
Finally, a fresh doctor asked a fresh set of questions. He listened to her
and found that she suffered from a gluten allergy that prevented her from
receiving the nutrients in the food she ate. After years of agony, she
quickly recovered.

    Fact: More than a quarter of all radiological tests, including CAT scans
and MRIs, are misread. "Misdiagnoses are not rare at all,"
says Groopman,
the noted oncologist and chief of experimental medicine at the Beth Israel
Deaconess Medical Center, who assembled this data.

While the patient safety movement has led to major improvements in protocols
to avoid systems errors, he points out, nothing has been done to address a
more profound issue: how doctors think. And bad thinking is what causes
countless mistakes
. "No one talks about this stuff," Groopman says.
He is struck by the lack of independent thinking among the residents he
leads on hospital rounds. "These are really smart people, and when asked for
a diagnosis they download cookbook recipes on their computers," he explains.
"If it's not that, they look blankly. How do I teach them how to think? I
realized I didn't know how I think. No one ever taught me how to think."

Groopman addresses this touchy subject in a book, "How Doctors Think," due
out this spring. In it are examples of bad thinking, including plenty of his
own, that produced harrowing results. None of this is news to patients. Most
of us know someone who has endured a misdiagnosis or have done so ourselves.
My friend Barbara went through a year of agony because of one.

Groopman's first child developed a persistent low-grade fever and stomach
pain at nine months. A doctor said not to worry, it's just a virus. The
child's condition deteriorated, but the doctor remained unmoved. Eventually,
Groopman and his wife rushed their son to an emergency room, where they
learned the child had an intestinal obstruction that would have killed him
had it gone untreated.

    What went wrong here?

The doctor sized up Groopman and his wife as neurotic first-time parents and
built his diagnosis around that premise. At work, says Groopman, were two
suspects common in these nightmares.

The first is what he calls anchoring - where a doctor interrupts you, seizes
on a symptom or complaint, and declares, "It's this." This snap judgment
anchors all ensuing thinking.

The second he calls attribution, to which women are particularly vulnerable,
where assumptions about a patient are attributed to bad data.

Groopman tells of a woman with a newborn child and two young children who
complained about constant nausea and diarrhea. "The doctor looked at her and
decided it was stress, that she was neurotic," Groopman said. "So he
attributes all of her complaints to the stereotype he has in his mind. I saw
her a few months ago. She had been diagnosed with a tumor in her intestine
but had been taking Zoloft for a year and a half."

Time is an insidious agent in all this. "In today's medical environment, the
clinic is a factory," he says. "It's a world of eight-minute visits. The
mistakes are made in the moment. Doctors draw immediate diagnoses rather
than listen and pursue leads. And when complaints persist, they all too
often cling to their first thought and even discount contradictory evidence.

"It's impossible to figure out a difficult problem in eight minutes," he
said. "A doctor has one eye on the clock and one eye on a computer screen as
he types notes. The truth is, you can't think well in haste.

"There is no generic besttreatment to a serious problem," he says: "We
delude ourselves to think the answer is the systems solution - 'We'll give
you an algorithm: if it's A then B then C.' You're got to know what A is in
the first place. And sometimes you have to go past C."

Many in the medical community will bristle at Groopman's findings. Others
will recognize the truth in what he says and, with luck, a few of the bean
counters controlling medicine today as well. They can't dismiss the book. It
is meticulously researched and written by a physician of stature.

"One solution for misdiagnosis is a patient or family member who knows how
doctors think," Groopman said.

So what should we be asking our doctors, over and over?

-->"What else could it be?"

         Sam Allis writes for the Boston Globe:

This is a problem all too commonly reported among CFS patients.  Doctors see that you are female, and leap to the conclusion that you are depressed, neurotic, or menopausal.

In the early days of the epidemic, one of the virologists researching AIDS was asked to evaluate some CFS patients for viral involvement.  Every one of the seriously-ill women was returned to the referring doctor with a psych diagnosis.  Finally, a male patient who was not nearly as impaired was sent over.  The same symptoms, lesser intensity, produced a conclusion that there was some virus at work, but it was not one that they could test for.

I have had doctors cling for dear life to their diagnosis of depression even after receiving psych evals that say there is no sign of depression.  They could not accept that they were wrong, so they had to either ignore the psych eval entirely, or arrogantly claim that the psych expert was wrong, and that their one semester of Psych 101 makes them better-qualified to make a psych diagnosis than the guy with Ph.D. or Psy.D. after his name.  A doctor who never once addressed my emotions was positive I was depressed, even though the depression diagnosis absolutely requires an emotional component.  The symptoms I had were those that anyone with the flu would have, but he wouldn't accept that rationale from the person with better psych credentials.  After telling me that he would not look further for a physical reason until I had a psych eval, he still didn't want to look further for a physical reason after being told that it was definitely not depression.  As Dr. Groopman notes in his book, once the doctor had made the diagnosis, nothing, not even contradictory expert input, was going to change his mind.

When my symptoms were contradictory to depression, and I complained that anti-depressants were making me sicker, the doctor could not, would not, reconsider "what else could it be?"  He simply turned around in his head what I said to him until he could make it fit the diagnosis he wanted to make.  The medical records reflect what he wanted me to say, and not what I actually did report.  He had himself convinced that I refused to take anti-depressants because I didn't want to get well and "have to" go back to work; nowhere in the records does it say that I took them a couple days and each time, within half an hour, became violently ill --  I could not continue taking them due to the severity of the side effects.

More than 15 years ago, Dr. David Bell cited statistics that fully half of all patients who initially got a "psychosomatic" diagnosis were eventually diagnosed with a real physical problem.  In some cases, the patient is extremely sensitive -- I've known people who could tell when some test value fluctuated by as little as 1% -- they would know that something was going wrong before a blood test could pick it up; a few weeks or months later, the fluctuation would have increased enough to become an abnormal test result. 

In other cases, the doctor leapt to a diagnosis of "psychosomatic" without getting all the facts.   As Dr. Groopman notes, this happens often to women, who are tagged "neurotic" because male doctors have a stereotype about women, that they exaggerate everything in order to get attention.  We women joke about it that a man with the sniffles takes to his bed and acts like he's going to die; a woman with the sniffles just keeps going.  Male doctors see it the other way around.  As a friend points out quite regularly, people assume that everyone does what they do: someone who eats a steady diet of fast food from the burger place next to the hospital is going to assume that the patients find it equally convenient to eat greasy garbage, and will pooh-pooh the patient's own reports that she eats mostly fresh produce from the farmer's market which is much closer to her work place.

And, unfortunately, autoimmune diseases tend to strike women more frequently than men.  They may not show up on the standard blood tests, resulting in assumptions that the patient is just looking for sympathy or attention or permission to quit her job.  In 20 years of dealing with CFS symptoms, I've found that female doctors are more likely to accept my reports of impairments as true and entirely accurate, and male doctors are more likely to attribute it to some cause other than a virus or accuse me of exaggerating frequency and intensity because I don't want to work, or I've figured out a way to get my husband to take care of me, or that I'd rather scrape by on a few hundred dollars a month Disability benefit than earn $50,000+ a year and be able to buy anything my heart desires (because no one who has not been on Disability would ever guess that benefits leave you below the poverty level). 


Neurobiological Differences Found in CFS

A study of neurochemicals in the brain and cerebrospinal fluid is shedding light on neurometabolic activity in CFS and how it differs from neuropsychiatric disorders that have symptoms that overlap CFS.

Just because illnesses have similar symptoms doesn't mean that they are the same illness. CFS shares symptoms with MS, AIDS, cancer, thyroid, polio... but isn't any of them.
The latest information on what CFS is (not the assumptions that it "might be" psychosomatic, but the truth) is at See, the report on the latest IACFS conference.
There was "a convergence of findings" around brain function and traits, mitochondrial dysfunction and oxidative stress, molecular biomarkers, virology and epidemiology.
For example, brain imaging and cognitive testing, exercise testing, genomic analysis, spinal fluid protein and cardio monitoring have all uncovered indications of oxidative stress and/or mitochondrial dysfunction in CFS. The mitochondria are involved in energy conversion at the cellular level.

However, as Dr. Starlanyl has stressed, "all tests are normal may mean the proper tests have not been done". Doing the correct tests may show something very different.
Nearly a quarter-century after the Tahoe epidemic, there are still doctors who don't know the first thing about CFS and are convinced that it's fakery because the basic blood tests are normal. Most of them refuse to be educated.
If you run into a doctor who refuses to accept that your problem is not psychological and comes up with the most far-fetched explanation for what you're really depressed/anxious over, change doctors!
I made the mistake of believing that because it was a well-respected medical group, they knew what they were doing. All they really knew how to do was to string me along until it was too late. Too late to recuperate and too late to sue.
If you get proper treatment in the early stages, your chances of remission are good. The longer it takes to get help, the worse your odds. After 5 years, the odds are almost nil, and, unfortunately, it took 5 years for me to get to someone who knew what he was doing.
Not every doctor knows everything about every disease. Do yourself a favor and find someone who DOES know about CFS. They'll deride this as "doctor shopping", but regaining your health is more important than paying attention to verbal abuse.

Tuesday, February 6, 2007

Damned if you do, damned if you don't

Doctors who don't know what they're seeing find all sorts of ways to blame the patient for her symptoms.

When I was married, the doctor's conclusion was that all my symptoms could be attributed to "you resent your husband making you work".  (Do I look that dumb that I would consent to marrying someone who told me I needed to support him till he graduated, if I were looking for a husband who would let me quit work?!)  Didn't matter to him that I said the symptoms started before we got married, they got worse after we got married, and that was proof enough for him.

Now that I'm divorced, I was told that all my symptoms were a result of being depressed over the divorce.  The symptoms were there while I was married, but this doctor chose to ignore that inconvenient fact.

A friend who has never been married (by choice) was told that her symptoms were because she was unhappy that she was unmarried.

Married, single or divorced, they're sure your CFS is solely caused by your marital status.

If you have a job, they blame the symptoms on stress.  If you don't have a job, they decree that you are faking these symptoms so you don't have to go back to work.  If you lost your job because of worsening symptoms, they turn this around in their heads and conclude that your symptoms started when you got depressed about losing your job for reasons unrelated to your health.

If you exercise regularly, you're just fatigued from over-exercising.  If you don't, then the problem is deconditioning.  If you stopped exercising because it made your symptoms worse, they conclude that you got worse because you stopped exercising.  A doctor who doesn't know much about CFS knows only that exercise produces a feel-good effect in most people and tells you to exercise and improve your mood.  A doctor who does know about CFS knows that you're telling the truth, that you had no choice, you had to stop exercising because it was unduly exhausting. 

I used to walk 20-25 miles a day on weekends.  Suddenly, I could barely make it the 10 feet to the bathroom, and needed to rest on the floor for half an hour before I could make it the 10 feet back to the bed.  There is no question that having that little stamina is abnormal, and especially for someone with my athletic history.  The doctor concluded that this was just one more bit of creative embellishment to get my way. It was too bizarre to be true.

"Too bizarre", except in the minds of CFS experts, who've heard not only that, but also reports of being unable to comprehend written or spoken English, and seen for themselves patients struggling to find the right word when speaking. 

The layman who looked after me during the initial virus naively called it "brain fever", and, in the long run, it appears his assessment was more accurate than some of the doctors'.  Research has shown viral damage and lesions in the brain, and all the symptoms can be attributed to a dysfunction of the central nervous system.

Which has nothing to do with whether you're married, single or divorced, or whether you work or not.

It's not the patients who need psychological help to overcome the symptoms, it's the doctors who put the blame on patients rather than listening to ALL the facts.  It was obvious from the comments of several of my doctors that the real problem was that they have a very low opinion of women, and had not yet moved their thinking into the 20th Century, not even when the rest of us were already into the 21st. 

All that mattered to them was their opinion that "all women want to be housewives" and not the facts being presented that this woman had started her own business as a high school student, this woman had worked for years, this woman was a successful careerwoman -- not even the fact that the problems started with a severe virus and were still accompanied by flu-like symptoms.