Something I've been meaning to post

(since I'm going for the SSA appointment next week. From fmnetnews.com)

Why Disability Testing for FMS is Often Misleading: Advice for FMS/CFS Patients and their Disability Team.

By Richard N. Podell, M.D., M.P.H. and Wendy King, Ph.D., R.N., A.P.N.

Many people with severe fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) still wish that they could continue to work. However, patients may lack the physical and mental stamina to do so on a sustained basis—with sustained being the key word here. Even when severely impacted patients can exert themselves and "push through," they experience a delayed flare-up of symptoms a few hours or a day later. Such flare-ups may last for several days, sometimes even longer.

Unfortunately, the disability testing protocol used by insurance carriers has been structured to exclude all data about this delayed phase, when FMS/CFS flare-ups frequently occur. The Functional Capacity Evaluation, or FCE, is the most common disability test used, and it only collects data during the test period itself, and ignores pain and other symptoms that flare later.
Disability insurance companies certainly have the right to demand proof that a person is unable to work. Malingering and exaggeration are real problems with which insurers must contend.

What's more difficult to understand is why some insurers also dismiss the judgement of those who know best, the physicians, friends and neighbors of the patient, those who are best qualified to confirm how FMS/CFS impacts the patient's life. Instead, insurers seek "objective" proof by actually watching patients exert themselves. Fair enough, in principle, but not fair or reasonable as often applied in practice, especially for patients with FMS or CFS (the latter also shares the delayed flare-up pattern).

Take, for example, Michael Hogan (a fictional name), a taxi cab driver who developed severe FMS/CFS about three weeks after an auto accident. He went through six months of trying different medications and sought help from physical therapy, cognitive therapy and nutritional supplements. He felt slightly improved, but still could not work 40-hours a week. After one hour in his cab, his muscle pain flared. After driving a little longer, the pain overcame his concentration. If he pushed any further, he'd be in bed for most of the next day. When that happened, decent sleep was impossible and he would experience severe brain fog.

Michael's long-term disability carrier asked him to take a functional capacity evaluation (FCE) to "see" if he could work. This was a series of light exercises which included toe-touching, carrying a ten pound weight, crawling, walking, and sitting. The evaluation lasted about two hours. Michael's attorney, who has FMS herself, felt that this FCE testing protocol was, by its very nature, misleading, and would drastically under-estimate Michael's true disability. How, she asked, could two hours of testing reveal how Michael would handle an eight hour a day job, for forty hours every week? She also complained that the FCE would not reflect any information in its report about how Michael felt and functioned that night, or through the next day, when his symptoms were most likely to flare. She asked for our professional opinion. We agreed with Michael's attorney, and this is why:

First, Michael would have to be evaluated by the FCE on an average or above average day. On his bad days, which averaged at least one a week, he just couldn't make it to the testing. However, if Michael went to work only on his "good" days, he would probably only make it one day out of five—no one will hire a person who is that unpredictable. Yet current FCE testing does not reflect this problem. What is needed is a way to test a person on a "bad day," without endangering the patient's well-being. Otherwise, unrealistically optimistic results are generated that don't reflect a person's true abilities to hold down a job.

Second, the test in which Michael touches his toes for one or two hours can't possibly predict how he will feel and function hours later, or the next day. Plus, the short test duration does not demonstrate whether Michael can keep this activity up for forty hours a week. Performing short-duration exercises is the least of Michael's problems; it's the delayed phase flare-up response that is likely to prevent him from working on a steady basis. A more appropriate and valid test of ability for people with FMS/CFS needs to realistically mimic a real work week, and include information on how the patient feels during the flare-up phase.

Those who administer the FCE seem to believe that the current test really does predict everything. However, this faith is almost certainly wrong. I have searched the scientific literature and have not found a single scientific paper that even attempts to measure the accuracy of the FCE for predicting the long-term work capability of people with FMS/CFS.
People with severe FMS/CFS don't have to be told this. As one patient put it, "To rule the delayed flare-up as ‘out of bounds' makes no sense at all. If it weren't so unfair, I'd almost describe it as silly." For Michael, as for most people with severe FMS/CFS, the process of completing an activity or exercise can be difficult, but the hardest part is getting through the flare-up, which may be delayed 6, 23, or 24 hours after the activity that set it in motion. One important question remains: How, in good faith, could one use a test for FMS/CFS that ignores the delayed flare-up phase?

Part of the answer, I believe, is that the FCE was not designed for FMS/CFS, but for a very different set of problems. For example, stiff backs, stiff knees, angina and emphysema are problems which, for the most part, quickly limit acute activity in ways that are quite clear to an observer. The delayed flare-up phase may seem fairly minor in comparison, at least for the uninformed observer. In addition, the FCE tool came into use long before FMS and CFS were recognized by most doctors.

Now that testers have had experience with conditions that have a delayed flare-up phase, why haven't they incorporated this phase into the testing? Also, why do they persist in excluding delayed phase data? One potential answer is the power of inertia. People become attached to the tools that they are used to, even when those tools are not the best ones for the job.

This brings to mind a (very) old story. An inebriated, tipsy man was crawling on hands and knees under a bright street light. He was searching for his lost nickel.

"Where did you drop the nickel," asked the passer-by.
"Oh, about half way down the block."
"So why are you looking for it here?"
"Because the light is so much better."

Like the poor man in the story, current practitioners of FCE are holding fast to a familiar tool, even though it leads them to look in the wrong place, and at the wrong time. Who has the power to redirect this bright light, so that it shines where and when it is needed? Technically, resolving the problem shouldn't be difficult. Extend the test period so it realistically mimics a full work week; devise a test suitable for bad days; and most important, collect data on the delayed phase.
For the last three years we have been doing just this kind of testing under the Food and Drug Administration's guidance, as part of our research testing of Ampligen, an experimental drug for CFS. Sensibly, the FDA requires that we routinely collect data on symptoms and performance for one week before as well as one week after each time we do an exercise stress test on a patient. We are confident we could adapt this tool to allow for better testing for the judgement of disability. In the end, it is imperative that new tools be developed and put to use for disability testing in delayed-phase medical conditions, such as FMS and CFS. We must find a way to redirect the street light.

=====================
About the Authors:
Dr. Podell and Dr. King practice together in Springfield and Somerset, New Jersey. They have a long-standing clinical interest in both FMS and CFS. Dr. Podell is a clinical professor in family medicine at the Robert Wood Johnson Medical School. Dr. King, an advanced practice nurse, has been an associate professor at the Robert Wood Johnson School of Allied Health Sciences. If you would like to visit their Web site click here.

=====================
What Could Be Causing Delayed-Phase Flares?
The answer might have something to do with muscle microtrauma or MMT. Robert Bennett, M.D., of Oregon Health Sciences University in Portland, first proposed the concept of MMT, in which small microscopic tears in the muscles may be occurring in patients during exercise or other physical activities. Ordinarily, the body produces extra growth hormone (GH) to repair these small tears, but he has determined that GH is abnormally blunted in people with FMS, and likely CFS patients as well. In our July 2001 newsletter issue we describe Bennett's growth hormone research and his treatment trial using GH injections. He found that after 6-9 months of GH therapy, patients began experiencing less pain with exercise. In a more recent study described in our July 2002 issue, we describe his most recent research project using Mestinon (pyridostigmine) to reverse the GH blunting that takes place in patients with FMS. In fact, based on this recent project, Kim Jones, Ph.D. (one of the co-authors on the Mestinon report), was awarded a $2 million NIH grant to pursue a four-year study on the relationship of Mestinon treatment, GH secretion, and exercise/activity in people with FMS.

Bennett's Method for Assessing Function in FMS
Like Drs. Podell and King, Dr. Bennett believes that there is a delayed-phase flare that may occur in people with FMS, and that testing on a single day may not be adequate. Regarding the prediction of function in people with FMS, Bennett says that this is a difficult and controversial area. He further explains, "Function at any one point in time is dependent upon several variables; in particular pain level, fatigue level, mood changes, medication effects, litigation status and motivation." He further states that in his opinion, "The critical feature of dysfunction in FMS is the inability to perform reproducible and sustained activity over time. This means that function cannot be meaningfully assessed in a single evaluation session. Rather, the same functional measurements each need to be made on at least three consecutive days. Simple tests that we employ include the following: (1) straight arm abduction to the point of muscular exhaustion while holding a 1 kg weight; (2) while seated, perform knee extensions to the point of muscular exhaustion with a 2 kg weight attached to the ankle; and (3) standing up from a sitting position in a chair to the point of muscular exhaustion."

The above tests are fairly simple to perform on patients, but Bennett emphasizes that the testing must be repeated for at least three consecutive days to be meaningful for FMS/CFS patients. Similar to Dr. Podell's views expressed in the above article, many patients may be able to perform the tests on the first day, but the testers need to look at a person's abilities at least three or more days later to adequately determine whether they are able to sustain a job. In addition to looking at a person's ability to perform a given set of exercises, Bennett also suggests that pre- and post-exercise pain levels be evaluated for each test day. Pain scores that escalate may also reflect problems with sustained function that would be necessary for maintaining a job.

===================
TECTONIC CHANGES IN DISABILITY LAW
By Joshua Potter, Esq., Pasadena, CA
There have been tectonic changes in the disability environment. By this, I mean that since the publication of the 1990 fibromyalgia syndrome criteria by the American College of Rheumatology, and the 1994 statement for chronic fatigue syndrome by Dr. Fakuda and others at the Center for Disease Control (CDC), little has changed in the disability landscape. There have been judicial skirmishes, insurance refinements, but the largest impact has been in the area of policy interpretation.

The last year of this decade has seen interesting, but only minor changes in the way the disability programs address the FMS and CFS communities. As early as October of 1998, there were signs within the Social Security Administration (SSA) that some Screening Attorneys were favorably disposed to granting disability for well-defined claims based on CFS/FMS. Just one month later, some Long Term Disability policies were beginning to pay initial claims for FMS and CFS, providing that the documentation was sufficiently strong. These events were no more than the seismic precursors to momentous changes which have now been realized in 1999.

On the last day of April, 1999, the SSA issued new regulations which are as staggering as the initial ACR statement and the later Fukuda statement. Social Security Ruling 99-2p (referred to as SSR-99-2p) has caused more than a mere earthquake. It will shatter the entire landscape of disability for individuals afflicted with CFS and FMS. SSR 99-2p boldly announces that these syndromes "are medically determinable conditions." This simple concept represents a vast breakthrough in appreciation. It is a bold declaration that legitimizes the clinical diagnosis. The requirements for SSR-99-2p are provided in the section below, "Medically Determinable Impairment Requirements for CFS and FMS."

During the last decade, patients have argued with uneven success that the pain and fatigue cycles against which they struggle are legitimate and real. They have struggled against professional gainsayers who have asserted that in the absence of a serological test or scan, the condition is merely a psychiatric manifestation and has nothing to do with clinical medicine. These practitioners, insurance companies, and judges who have invested themselves in the flat denial that illness can exist absent serologic studies must now reassess their position. As a matter of regulation within the SSA, CFS and FMS exist as a disease process. As such, these conditions can result in a finding of disability. SSR-99-2p is not the most complex regulation drafted, but it will require careful reading to appreciate.

SSR-99-2p will not open the floodgates for claims before Social Security. It will serve to exclude more than it includes at first. SSR 99-2p will need superior charting and greater attention to detail, especially by physicians as well as patients. Testimony will have to be more concise and narrowly focused. Within Social Security there will no doubt be some lag time in the application of the new regulation, but greater problems will occur in the mountains of charting which already exist and cannot be altered. It is in the future that the greatest change will occur. This new piece of regulation, as momentous as it is, nests within a series of other complex rules and regulations and its application depends on demonstrating that the other regulations have been satisfied.

The only way that this most modest requirement can be accommodated is by having complete and thorough charting. Charting means historical medical records that detail the tracking of failed therapies as well as the documentation of symptoms and function. It will not only include one's medical history, but also work history. Reliance on a shorthand in which the diagnosis appears unsubstantiated and unexplained throughout the chart will simply be unacceptable. The medical community must take heart that the Federal Government has taken this momentous step. Physicians who make the diagnosis of FMS or CFS should no longer be subject to derision by their colleagues. But more important to the patient is that the constellation of symptoms needs to be featured within the chart. This is because the symptoms themselves play an important role in any disability determination, whether Federal or Private.

A patient's chart will be considered incomplete if it merely recites the diagnosis and the medications prescribed. Not only must the chart demonstrate that the patient meets the American College of Rheumatology criteria for FMS or the Fukuda Standard in the case of CFS, but more importantly, what are the symptoms and complaints associated with that diagnosis? The diagnosis by itself is not the equivalent of disability and will never support a doctor's comment that the individual is or is not disabled. The legal-medical-vocational amalgam of the sundry facts are what the disability system is predicated on.

As the SSA adjusts to the new rules and judges become more familiar with SSR-99-2p, so too must the private long-term disability (LTD) carriers. Though the implications of SSR-99-2p are profound to Social Security, they will be revolutionary to the private insurance industry. The great LTD carriers will rapidly have to readjust their positions in light of the new law. LTD carriers will need to look squarely at the functional impact of FMS and CFS because the great debate over the meaning of "medically determinable" has finally been settled.

We stand at the threshold of a new environment. It is imperative that physicians and patients work together to provide clear and concise charting. These are exciting times in which we operate. It's now time to focus on the diagnosis and consequences of these conditions. The battle to make FMS and CFS medically determinable diseases by the SSA has been won. Take the steps necessary to ensure that you and your health care team are complying with the documentation requirements set forth in SSR-99-2p, just in case you might need to rely upon this new ruling in years to come. Read the final section of this article for more information on what this documentation should include.

===================
Medically Determinable Impairment Requirements for CFS and FMS
One or more of the following must be documented for at least six consecutive months:

--Palpably swollen or tender lymph nodes on exam
--Nonexudative pharyngitis (sore throat without signs of inflamation)
--Persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points

There is considerable overlap of symptoms between CFS and FMS, but individuals with CFS who have tender points have a medically determinable impairment. Individuals with impairments that fulfill the ACR criteria for FMS (which includes the minimum number of tender points) may also fulfill the criteria for CFS. However, individuals with CFS who do not have the specified number of tender points to establish FMS may still be found to have a medically determinable impairment.

=====================
The following tests may be used to help establish a medically determinable impairment in individuals with CFS (and FMS if they meet the criteria):

Elevated antibody to EBV capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640

--An abnormal MRI scan of the brain
--Neurally mediated hypotension as shown by tilt table testing or another clinically acceptable form of testing
--Others tests, such as abnormal sleep studies or exercise intolerance

==================
Documentation
...view it as an insurance policy

Not to sound pessimistic, but you never know what the future holds. If you take steps now to regularly document your health and work status to meet the requirements of SSR-99-2p, then at least you won't have any regrets later if you are overtaken by ill health. More often than not, FMS is triggered by unexpected events such as auto-accidents, infections or the onset of another illness. These same events can also lead to a serious decrement in function from which your body may not fully recover.

Once you have endured a setback in your health, it is usually too late to start thinking about issues of documentation. The SSA will look at your medical records for the past 12 months and weigh that information against their template. If your physician writes a complete chart, it is possible that disability will be paid. Unfortunately for you and your physician, this scenario is not common these days.

The new SSA ruling will allow an interested reviewer to also take into consideration the personal records of a person with FMS/CFS, such as a journal, diary or notes that describe one's impairment(s) and its associated impact on function over time. Again, the SSA will be looking at relevant evidence for the 12-month period preceding the month of application to them.

What about LTD carriers and insurance cases involving motor vehicle accidents of people who have previously been diagnosed with FMS or CFS? Chances are, they will apply standards as strict as SSR-99-2p.

If you don't want to find yourself at the mercy of the court system and government-paid Independent Medical Examiners who may not realize how functionally impacting FMS/CFS can be, start taking the following precautions now:

--Visit your FMS/CFS physician at least three times a year. During each visit, bring with you a list (preferably typed) of your dominant symptoms and any significant problems that you are having with function (work, house chores and social activities). Make sure that this gets incorporated into your medical record and keep a copy for yourself. If you have done your job of getting right to the point of the visit, then you shouldn't feel awkward about asking what he or she will be writing in your record.

--Whenever you visit any health care provider (gynocologist, naturopath, chiropractor, physical therapist, occupational therapist, counselor, etc.), try to follow through with the same recommendations as given above for physicians.

--Keep your own journal, diary or notes.

SSA has set up an exam for me...

It's on November 2nd (so I have something else to look forward to besides voting for the next leader of the free world). The doctor is female, and I hope to God she has treated FMS patients before, or this will be a colossal waste of time.

I'm going to call the doctor's office on Monday and check out what I'm going to be up against. I'm not going to make the same mistakes I made when I did this before nearly two years ago. I need to get some answers, so I hope that this doctor has some idea what FMS is, because the last doc SSA sent me to didn't. I could tell by the tests he gave me.

More on this later...meanwhile, I have some homework to do.

Vioxx and other COX-2 drugs

I was reading this article on webmd.com regarding Vioxx and its sister drugs Celebrex and Bextra. I've never taken Vioxx, but have taken Celebrex and Bextra. Both of the editorials in the New England Journal of Medicine and its UK counterpart, The Lancet, stated that since Vioxx isn't safe, then Celebrex and Bextra, like Vioxx being COX-2 drugs, probably aren't either.

I just downloaded a copy of the NEJM article, and you have to be a friggin doctor to understand what it says! I'll read it and try to decipher it. Sheesh!

--MorelaterZ--

Gettin' my sleep on...at all the wrong times

I did nothing today but sleep. I felt like my limbs weighed more than I could lift and I just wanted to veg out. I get some of my best sleep at all the wrong times of day, like 3 in the afternoon. If I could do that at midnight, that would be great, but that cycle hasn't come around to me yet.

And, of course, everything still hurts. Ever since the news broke about Vioxx, I've been leery about taking the Celebrex that my brother-in-law (a family practice doctor) gave me. I'll have to look that up. For some reason, I'm thinking that Vioxx and Celebrex have the same basic components.

And I've been so damned depressed as of late. Some days, I just feel like giving up (like today). and some days, I know I need to see someone, and I get depressed because I can't afford to see anyone.

This is one of those days that my life really sucks.

--MorelaterZ--

Some good information

Believe it or not, the following article is from Wikipedia, and it has some good general information about Fibromyalgia (FMS). It states, in part, relating to the diagnosis of FMS:

Fibromyalgia is considered a diagnosis of exclusion, and laboratory testing should be completed to rule out other similar conditions such as endocrine disorders, arthritis, and Polymyalgia Rheumatica. Most physicians use a diagnostic technique of palpitating tender points, specific spots on the body that are usually very pressure-sensitive in individuals with the disorder. This technique was developed by the American College of Rheumatology as a means of confirming the diagnosis for clinical studies, and required participants to have 11 of 18 identified tender points. While many fibromyalgia patients express pain on palpation, patients with a high pain tolerance may not feel any pain during this exam. In recent years this has caused researchers to rexamine this diagnostic criteria but it has not yet been entirely abandoned. There is stated evidence that chronic fatigue syndrome is the same disorder as fibromyalgia in individuals with high pain tolerance.

Another method of diagnosis is a specialized technique called mapping that is a gentle palpitation of the muscles to detect lumps and areas of spasm that are thought to be caused by an excess of calcium in the cytosol of the cells. This is especially useful to physicians who believe fibromyalgia can be reversed. This theory of the cause of fibromyalgia is known as the Guaifenesin Protocol.

This is one of the more informative articles on FMS that I have read on a non-medical website. The people who wrote this really did their research and not write it off as a "bogus" medical problem (like a lot of doctors still do, unfortunately).

--MorelaterZ--

In the, um, ahh, zone--yeah, that's it!

I noticed it again yesterday when I came home from the store. I sat in the car and zoned out for God only knows how long. All I knew is that my lunch was cold and the gallon of milk I bought was getting warm.

I've been doing that periodically almost my whole life. I'll be somewhere and I'll just sit there and just, well, stare off into space. I don't know if this is related to FMS, or if this is something completely different. The scariest times are when I'm driving and I get disoriented on roads I travel everyday. Maybe I shouldn't be driving, but I 'm the one who does all the shopping, banking, etc., for my mom. She can't drive at night.

I really should get to a doctor and have him/her figure this out. But, without insurance, there's little I can do. That's why getting disability is important to me. I'd have a regular income and have the means to get insurance and see doctors to treat me for the FMS.

I'm on the SSA merry goin-in-the-round, so I'll have to wait on them, because I don't want to sit all day at the SSA office at Shepard Mall waiting to talk to someone. They'd have to carry me out on a stretcher.

What's a gal with FMS to do?

--MorelaterZ--

My hands hate me this week

They've been bothering me all week. I took some Aleve and that lessened it somewhat, but they are still hurting me something awful.

I think I've finally recovered from my trip to the fair. Thing is, I want to go back before it ends tomorrow. I must be out of my mind!

This week, I've forgotten so much stuff because of the fibro fog. Like the name of my Cajun's dog, for example. The dog's name is Blue, but I couldn't come up with that in a conversation with someone on the net to save my life! All I could remember was that he was a he and he was a pit bull.

Or, the last name of my sister's best friend from high school. Either her maiden name or her married name.

And for some reason, I wanted to tell people that my oldest son's birthday was December 16th. His birthday is December 14th. The 16th was the day he was due.

I've also been forgetting to get receipts for the withdrawals I make from the ATM. Makes my checking account harder to manage. Thank God for online banking!

In short, I've been a mess this week. I hope next week is better. It couldn't get any worse (could it? Wait don't answer that!).

--MorelaterZ--

Still more forms to fill out...thanks SSA

Got a "pain survey" form from SSA in the mail today. One of those "tell us all about what you do all day and how that causes pain" forms that you have to fill in multiple pages of. You wanna know what I do all day, SSA, and why it causes pain? Read this blog!

I started to fill it out, but I had to stop because my hands are killing me and making my handwriting look like an old woman filled it out. I'll get back to it later, I guess, because it's going out in tomorrow's mail. Period. I get those things filled out and back in the mail as soon as possible. Hopefully, they won't lose it like they did the last form I filled out (the one containing the certified copy of my birth certificate, which was missing for FIVE WEEKS!!!). Maybe I'll stick one of those green cards from the post office on the back. You know the one, the recipient has to send it back to you when they get your letter, package, etc.

Is it just me, or does SSA make you answer the same questions a million times to see if your answers match? I wish I could just refer to one form on any subsequent forms, i.e. "refer to answer 23A on form #1234-09". That would be so much easier! But this is the government we're talking about, nothing, no-flippin'-thing is easier! They have to make it as hard as possible. This I find stressful and stress isn't good for my symptoms.

I'm still exhausted from my sojourn to the state fair on Sunday... but it was so worth it!


--MorelaterZ--

I knew this was trouble, but it was worth it

I went to the fair on Sunday, and I actually got thru it okay. The heat was awful though, and that, I think, contributed more to my being tired than walking around the fairgrounds did.

Uh-huh.

All day Monday, I either was on the computer, or I slept. I couldn't fall asleep for anything last night, and tonight (i.e. right now) is looking the same way. I am just now (at 2:40am CDT) beginning to feel sleepy.

My arms and legs felt like they weighed a million pounds each and hurt like hell. My back is bothering me, and my whole body aches! And not a pain killer in sight.

Well my life just sucks, don't it?

--MorelaterZ--

I don't know if this has anything to do with anything

but I feel like I'm about to cry. I've felt like this all day today and for several days prior. I don't know why.

--MorelaterZ--

Indeed, look what the cat dragged in...

Sheesh!

All I've done lately is sleep. Very rarely do I sleep til noon unless I have a cold or the flu, but the last couple of days, I've done just that. I don't have either the flu or a cold. I'm just plain exhausted. I'd understand it if I'd actually done something, but I haven't.

I'm just tired. Excessively tired.

And still no cash to spend to see doctors. C'mon SSA, I need answers here!

--MorelaterZ--

This looks promising...

so those of us with FMS can only hope that when this test becomes available, doctors will take us seriously.

"Autoimmune Technologies LLC, a New Orleans biomedical company, and
Corgenix Medical Corp., a producer of diagnostic tests based in Denver,
developed a method for accurately diagnosing fibromyalgia, a chronic pain and
fatigue disorder. The test is called the APA ELISA Kit, short for Anti-Polymer
Antibody Enzyme Linked ImmunoSorbent Assay.

Researchers at Tulane discovered the antibodies that form the
foundation of the APA ELISA Kit. Using several million dollars provided through
private equity capital, Autoimmune began developing this technology in 1995.
Corgenix was brought on to take the product through the final stages of
development.

The kit will hit the world market in September and, pending Food and
Drug Administration approval, will be available in the United States in less
than two years. The kits, which will be administered by medical professionals,
can test up to 40 people at a cost of $149 per test. "

So the good news is that there is now a test to diagnose FMS. The bad news is that we have to wait about two years for it. As for the $149 cost, obvioulsly at this time there is no way to know if it will be covered by insurance.

"Michael Charbonnet, Autoimmune chief executive, said his test kit strongly
supports fibromyalgia as a disease.

Unfortunately, many physicians still think fibromyalgia is something
made up by a bunch of crazy women, he said."

Yes, I've seen doctors who think I'm crazy and put me on anti-depressants. My own sister, herself a physician, thinks I'm using FMS as an excuse not to work. She'll be getting a copy of this article. I cannot work because of this. This is no excuse! Hell, if I had never been diagnosed with this, I'd probably still be in Massachusetts!

"In 1990, the American College of Rheumatology, a professional organization
of rheumatologists based in Atlanta, defined fibromyalgia as a chronic pain and
fatigue disorder. Most doctors now accept it as a real disease but many still
believe it is nothing more than women complaining about a few minor aches, said
Dr. Robert F. Gary, professor of microbiology and immunology at Tulane
University Health Sciences Center.

There is much that still needs to be learned about this illness,
including how it is contracted, Gary said. But it is a very real disease and the
women effected are truly suffering."

Shortly after that, the Social Security Administration has classified it as a disabling disorder, and is eligilible for coverage for Disability and SSI claims (something I've been trying to get for two years! I first applied for SSA Disability and SSI two years ago yesterday!)

I'll keep my eyes and ears open and see if there will be any clinical trials. I'd love to get in on something like that, even if it's just to prove to people that I'm not faking it!

--MorelaterZ--

I feel like I've been hit by a Mack truck

This is getting a bit ridiculous! I am so sore! All I did was go grocery shopping with my mom.

I've noticed that I've had a bit of "brain fog" lately. That scares me because I forget words and stuff that I use all the time. So far, I haven't forgotten names of people I know and important dates.

I've got to get to a doctor and get this mess under control. I feel like I'm deteriorating before my very eyes. Four hour naps in the middle of the day, muscular pain without any effort, and forgetting the name of the cigarettes my mother has smoked for 30+ years is driving me mad!

Help?!


--MorelaterZ--

My "experiment" was a big, fat Greek failure of Olympic proportions

Now I have something to present to a doctor to show that I cannot work.

Sitting at my computer station at home for just fifteen minutes left me in a considerable amount of pain and discomfort. And SSA thinks I can do this for 8 hours a day, 40 hours a week, every week? If I can't do it for fifteen minutes, then anything longer is out of the question.

I can't do it at the library, either, where the chairs are a little more comfortable, but the pain is still there.

I'd like nothing more than to get treatment so I could go back to work at some point, but the plain fact of the matter is that I need help, and help from the state of Oklahoma is not forthcoming. Sooner Care (the Okie equivalent of Medicare)? Gotta be on Disability already. Monetary assistance? Gotta be on Disability already. I wonder if I have to be already on Disability to get Section 8 housing, too? Probably. I intend to find that out.

Thanks, Oklahoma, for all the nothing you've given me.

--MorelaterZ--

This is not the kind of flare that you set out when your car breaks down

...rather, it's the kind of flare that happens as your body seems to break down right before your eyes.

I'm doing a little experiment. I've reconfigured my computer workstation to resemble (more or less) the kind of thing I'd be doing during a 40 hour work week. So far, the results of this experiment have had exactly the results I expected: I'm in a great deal of pain after just a few moments of sitting in a regulation office chair (borrowed from my oldest son), typing on the keyboard, and talking on the phone. After approximately 10 minutes, I have to log off the internet and lay down to rest. And after laying down to rest, I'm still too exhausted and in too much pain to continue. My arms, legs, hands, feet and back are all begging for mercy after keeping this up for an entire week.

I can't work a regular full time job under these conditions. I'd be taking more breaks than working. Who in hell is going to hire someone that unreliable? It's been over a year since I had even a temp job, and two years and a little over a month since I held a regular 40 hour a week job. If I were to get Disability and SSI, I can go to doctors to get treatment, so I could possibly someday go back to working full time. After all, I cannot retire until after February, 2031, when I am 67 years old. I'm only 40 now. Twenty seven years is a hell of a long time to wait. I'd rather be working during those 27 years, thank you, but right now, in 2004, I cannot work. I need help, SSA!

(This is a depressing thought...when I'm 67, my 13 year old will be my age right now, 40!)

I have a headache, and I can't sleep. So what the hell else is new?

--MorelaterZ--

I feel like crap...so what else is new?

I'm in flare again. My body aches, and all I want to do is sleep (just not when I'm supposed to *sigh*).

Dean gave me some Bextra several months ago, but all it does is make the fatigue ten times worse.

SSA sent me more paperwork to fill out. I really hate those stupid authorization forms! SSA sends me ten of them at a time, and I'm wondering who they're sending them to for me to need so many of them. My sister acted as my witness, meaning she had to sign all ten of them, too. She doesn't think I'm going to get Disability this time, either. Thanks for the good wishes, sis...NOT!

I hope that SSA sends me to another doctor, one that has some idea what I'm going thru. The lame exercises that I had to do last time isn't going to cut it. It didn't measure how I felt the next day, and didn't put me into situations that I would encounter while working. Stress plays a big part, too, and they didn't measure that, either.

If they're going to pull this crap on me this time, I'm going to call them on it, because I know what I think needs to be evaluated. They're just doing a job, and that's to report back to SSA that I don't have a problem. I suspect that any doctor that SSA sends me to is not up on FMS and its attendant symptoms, and nor do they care.

I gotta get outta Oklahoma.

--MorelaterZ--

An open letter to friends and loved ones...

(otherwise, those of you who are "normal")

Having FMS means many things change, and a lot of them are invisible.Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand...

These are the things that I would like you to understand about me before you judge me...

- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours, too.

-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand for twenty minutes, or an hour. And, just because I manage to stand for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of disease you are either paralyzed, or you can move. With this one, it gets more confusing.

-Please repeat the above paragraph substituting "sitting", "walking","thinking", "being sociable" and so on.... it applies to everything. That's what FMS does to you.

-Please understand that FMS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." ObviouslyFMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can't be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.

-If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with FMS, then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would know.

-If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.

As much as it's possible, I need you to understand me, and still love me. I miss my former life...I miss everything I used to do that I can't now. I grieve for those things.....in a way you cannot understand.

Please just be there.....

Aspartame and FMS, part 2

Report: aspartame is Neurotoxic and Worsens Fibromyalgia, Chronic
Fatigue Syndrome
ImmuneSupport.com

05-10-2004

By Pratap Ravindran
Pune, India

(note: boldface and italics therein are mine. --Stef)

COCA-COLA, PepsiCo and a whole bunch of other big companies are in
the dock again, this time around because of their use of the
artificial sweetener, aspartame.

It all started with a Miami longshoreman, Mr. Bartimous Berry, filing
a lawsuit in March in a state court in Miami, claiming that Coca-Cola
Co, the world's largest manufacturer of soft drinks, is selling a
version of Diet Coke at soda fountains which are cheaper and more
profitable than the formula used for beverages sold in cans and
bottles.

It was alleged in the suit that Coca-Cola mixes the sweeteners,
aspartame and saccharin, in its beverages sold at soda fountains,
while canned and bottled Diet Coke contains only the more expensive
aspartame.

Coca-Cola, which says it uses saccharin to stabilize fountain syrup
before adding carbonated water, doesn't advertise the difference,
according to the suit.

Mr. Lance Harke, who represents Mr. Berry in the suit which seeks to
represent all Florida soda buyers, told the media: "Coca-Cola profits
not only because there's a higher profit margin but also there's a
stigma associated with saccharin rightly or wrongly."

It may be recalled in this context that saccharin had formerly been
classified as a carcinogen in the US.

Mr. Dan Schafer, Coca-Cola spokesman, had been quoted by the media as
saying that saccharin is used for "product quality reasons" and not
for "money reasons."

According to Mr. Schafer, aspartame loses its sweetness faster in a
fountain drink than in a canned or bottled soda. He said, "We think
the suits are frivolous and we think they are without merit," adding
that the company faces identical allegations in lawsuits filed in
Illinois and California.

Subsequently, in April, other lawsuits were filed in three separate
California courts, Shasta, Sonoma and Butte County, against twelve
companies which produce or use the artificial sweetener aspartame,
originally made and marketed by Monsanto Corporation, as a sugar
substitute in their products.

The defendants in the lawsuits, which identify aspartame as a
neurotoxin, include Coca-Cola, PepsiCo, Bayer Corp, the Dannon
Company, William Wrigley Jr. Company, ConAgra Foods, Wyeth Inc, The
NutraSweet Company, and Altria Corp (parent company of Kraft Foods
and Philip Morris).

The plaintiffs have asked for an injunction to stop companies from
producing, manufacturing, processing, selling or using aspartame and,
in all three cases, have sought a jury trial.

The suits allege that the food companies committed fraud and breach
of warranty by marketing products with the full knowledge that
aspartame, the sweetener in them, is neurotoxic.

According to the plaintiffs, aspartame is a drug masquerading as an
additive. It interacts with other drugs and is a chemical hyper-
sensitization agent. Aspartame, it has been alleged, causes headache,
memory loss, seizures, vision loss, coma and cancer. In addition, it
worsens or mimics the symptoms of such diseases and conditions as
fibromyalgia, MS, lupus, ADD, diabetes, Alzheimer's, chronic fatigue
and depression.

Experts have been quoted as saying that aspartame liberates free
methyl alcohol. The resulting chronic methanol poisoning affects the
dopamine system of the brain causing addiction. Methanol, or wood
alcohol, constitutes one-third of the aspartame molecule and is
classified as a severe metabolic poison and narcotic. Further, the
consumption of aspartame can cause sudden death brought about by the
damage it inflicts on the cardiac conduction system.

Herbal variants find their way

The dangers of aspartame (NutraSweet) ingestion were first publicized
in India in the July-December 1995 issue of the Association for
Consumers Action on Safety and Health (ACASH) newsletter.

The ACASH newsletter warning had stated: "All of the breakdown
products of aspartame are toxic. It has been shown that Aspartic Acid
and Gutamic acids in free forms can cause severe neurological damage.
These acids damage the nerve cells in its free forms."

The warning had been based at least in part on a review of aspartame
research which appeared in the Journal of the Diabetic Association of
India (Vol. 35, No. 4, 1995). The research review was written by Dr.
J. Barua (Ophthalmologist) and Dr. Arun Bal (Surgeon).

This and other similar warnings notwithstanding, the Union Government
permits the use of artificial sweeteners in approximately 25 food
items, including sugar confectionery, toffee, lozenges, chewing gum,
chocolate products, carbonated water, soft drinks, traditional
sweets, jams and jellies.

According to the Ministry of Health and Family Welfare's draft
notification amending the PFA rules, the use of artificial sweeteners
can be allowed in food products according to specifications.
Manufacturers are, however, required to print a declaration on the
package saying, "contains artificial sweetener."

Today, the country's artificial sweetener industry has an aggregate,
annual turnover of Rs 60 crore and is estimated to be growing at 20
per cent a year because it has successfully expanded its clientele
from diabetics to all calorie-conscious people. Almost all these
artificial sweeteners contain aspartame.

According to the industry, aspartame has been approved by major food
and drug regulatory authorities across the world.

However, with some medical practitioners in India questioning the
merits of its long-term usage among healthy people, some herbal
variants which contain neither sugar nor aspartame have been
introduced in the domestic market.

Copyright © 2004, The Hindu Business Line. Online at
http://www.thehindubusinessline.com.

Aspartame and FMS

I drank diet sodas this past weekend. I had read months ago that Aspartame (NutraSweet) can aggravate the symptoms of FMS, and I have found that to be true. I wasn't even thinking about that when I had Diet Coke at my sister's on Saturday, and Diet Pepsi on Sunday. But now, I'm feeling it. I've been in quite a bit of pain Monday and today. I never thought to connect it to artificial sweetners.

There was a time where I was drinking diet sodas regularly. There are so many foods that have artificial sweetners in them that I wasn't even aware of. I'm going to have to make an effort to avoid things with NutraSweet, Splenda, Sweet 'n' Low, etc. I don't know if that alone will help, but it's a start until I can contact a doctor and begin regular treatments.

There are so many places on the web that promise that their method is the method to answer everything. I generally take those with a grain of salt. If they're so good, why haven't the doctor's that treat FMS patients heard of them? Why haven't been written up in medical journals and splashed across our TV screens? Probably because they're either bogus, or are being supressed by those doctors who don't think that FMS/CFS is a "legitimate" medical condition.

This is where I found some information. There are some good recommendations, but that's something that want to explore on my own before I render an opinion.

--MorelaterZ--

How I feel: like I've been beaten up everyday for the last 15 years

And that's how I feel right now.

It seems that everyone in my family believes that I am faking FMS. My sister has actually come out and said this to my face, about how I'm using it as an excuse not to get a job. One, there are no jobs for me here! Two, I couldn't fake this even if I wanted to, because before I was diagnosed two years ago, I hadn't even heard of Fibromyalgia! All I knew is that I was (and still am) in a lot of pain and fatigued beyond belief. And my sister is a doctor (though not one who treats patients with FMS)!

I reapplied to SSA for disability and SSI. But, I think I will really have to leave Oklahoma before I can get any assistance. If I stay, my only alternative is to find a job, and I already know that I can't work. But still, I look for work, but it seems to be a fruitless exercise. The job market here is a joke. And my FMS seems to be getting worse the longer I don't see a doctor for treatment. Kinda hard to see a doctor when you have no income, and the agencies that are supposed to help you won't because you're not already on disability! All they do is make excuses and suggestions.

It was a huge mistake to come here. Had I just done a little homework before I left Massachusetts, maybe I would have found this stuff out before I got here, and therefore not come at all. But if I had stayed there, I would have been homeless, as I was being evicted from my apartment because I could no longer afford the rent.

No one here in Oklahoma, not my family, nor the state, nor SSA, understands that though. No wonder my hair is turning grey at a rapid rate!

--MorelaterZ--