It's New Year's Eve

and I'm in flare. Happy New Year.

--MorelaterZ--

Tired, frustrated and depressed...

Tired: I've been trying to get some additional exercise, as i have put on weight. None of the clothes I brought with me when I moved here to Oklahoma two years ago fit me properly any more. I can still wear them, it's just that the pants are a smidge too tight, and the tops just don't look right on me anymore.

However, the exercise, no matter how gentle, still wears me out. I've been doing a lot of running around because of the holidays, and that exhausts me to the point where I don't want to do anything.

I've decided that I am going to attempt a diet of some sort after New Years, because the Cajun has announced that he wants to drop 100 lbs. So now, my competitiveness is now kicking in and I want to show him that I can lose some weight, too.

And at the same time, I'm afraid I'm going to be taking on too much.


Frustrated: Things that I think should happen a certain way, don't. Things that I think should look a certain way, don't either. I seemingly have no control over anything other than my emotions, and I fear I'm starting to lose control over even that! Which leads me to...

Depressed: I pretty much covered it in the last post, but now I'm depressed over being depressed, and the holidays certainly don't help matters, but I feel like this 24/7/365, especially in the last two years. And I hate, with a passion, feeling this way.

I've been in a mini flare the last week or two, and I have been taking Celebrex for it. I've experienced no significant problems taking it. But, my supply is running low and I'm debabting whether I should continue to take it. I can always take Aleve, because I've never had a problem with that, either. I think the press is making way too much out of this. All drugs have side effects, and if you take too much, you could very well have a problem.

But, I have ranted about this in other posts, and I'm not in the mood to repeat myself.

January 20th could get here soon enough...I know I've said that before! LOL

I wonder if I can get the date changed to an earlier date?

--MorelaterZ--

Meanwhile...

I'm having a problem here.

I'm jumpy, forgetful, overly emotional, thinking weird and scary things, and just generally down in the dumper. And it's not just because of the holiday season...I've been feeling like this for quite some time, and I don't know if I can keep it together and under control for too much longer. If I didn't have this blog and my other one, writing things down, I don't know what would happen to me.

I know that the depression is related to the FMS and RA, and because I can't seem to get people to understand that I really do have a problem here. I know I need medical treatment, but at the present time, I cannot afford it. Meanwhile, my self esteem and my well being are slowly eroding away. All I want is peace of mind, and I fear it is not forthcoming fast enough.

January 20th is seemingly a life time away...and even that is no guarantee I'll get benefits. Just what the hell do people expect me to do? Self destruct?

--MorelaterZ--

And now naproxen?

What gives?

If they're going to say that all painkillers cause heart problems, then what's a chronic pain sufferer to do? Either they do (cause problems) or they don't.

Again, if someone has a history of heart disease, perhaps they shouldn't be taking these drugs. But don't put the word out there that simply taking them will cause you to have heart disease. That would be irresponsible. Doctors should know if their patients health history well enough to know what drugs to prescribe and what ones not. Just because Vioxx or Celebrex or Naprosyn or whatever works for one person without incident, it cannot be assumed that it will be good for someone else. Even I know that and I'm no doctor.

I'll keep an eye on the developing story. It sounds like all the cancer scare crap of twenty years ago...give us a little credit for brains here, drug companies! Sheesh!

(If we weren't all crazy we'd all go insane...)

--MorelaterZ--

Not again!

Yet another report about a COX-2 inhibitor hit the internet today. This time, it's Celebrex, the very COX-2 drug that I take!

A long term cancer study shows that Celebrex causes twice as many heart attacks than a placebo (well, duh! When sugar pills cause a heart attack, and that's what a placebo is-- a sugar pill-- then I'll know that the karma of the world is screwed up!). Another study of cancer patients shows no significant change.

Additional note: I read today -18 Dec.- that participants in the one cancer study were given 600-800mg, or roughly FOUR TIMES the usual dosage! In that case, I can see where that may be a problem. That alone should not be the basis to pull Celebrex off the market. Get real!

The thing that gets me is this: the insert for Celebrex states that people with heart conditions should NOT be taking this drug. Had some of these medical "experts" read the insert, they would have known that. The inserts for Bextra (like Celebrex, manufactured by Pfizer), and Vioxx (Merck) say the same thing. If you have heart disease, perhaps you shouldn't take our drugs.

I haven't had problems with Celebrex, unless saying that it makes me really sleepy is a problem (I take 200mg once a day). It does in me what it's supposed to do, and that's get rid of the pain. I don't have heart disease, so I'm not worried. I only take it when I need it, and that's not very often. I've been able to ward off some pretty bad flares with Celebrex, and I'll stop taking it if and when Pfizer takes it off the market; or if a doctor tells me there's something better out there.

--MorelaterZ--

This post updated 21:46 on 18 December 2004.

The letter came, and

my appointment with the doctor who will see me about my depression at SSA's expense is January 20, 2005 at 10am. Good news: this doctor is in Edmond, so I don't have to go traipsing all over OKC to find the doctor's office. It's relatively close to the house.

January 20th? Isn't that when the Inaguration is? No matter, I wasn't planning on watching it anyway.

Funny...my first appointment was on election day (Nov. 2) and this one is on the day the winner gets sworn in.

Ha. Ha. Like he's done me any favors lately.

--MorelaterZ--

This rocks!

From Yahoo! News:

It's being reported that Pfizer's Celebrex (which I take) is three times less likely to cause problems than Merck's Vioxx. Nothing in this report that mentions Pfizer's other COX-2 drug, Bextra.

This is good news, for me anyway, because I've been taking Celebrex periodically since at least January 04, when Dean* gave me some samples. It makes me quite sleepy, so I try to take them at nightime when I'm supposed to be sleeping anyway.

So that's 2 pieces of good news for me today. Things are looking up ever so slightly.

--MorelaterZ--


*for those of you who haven't been reading this very long, or don't read my other blog, Dean is my brother in law who is a family practice physician.

Okay, maybe it wasn't a waste of time

SSA called me this morning. They got the report from the doctor that I went to for the medical exam last month. Apparently, that doctor notated that I was depressed (I may have mentioned it to her, though right now, I honestly don't remember), and the woman from SSA asked if my depression was a major factor in my claim. I told her that the pain from FMS and RA were the main factors in my claim and that depression was a by-product of my initial illnesses. She also asked, that if I had the money to do so, would I go for treatment for depression. I told her I would. So, SSA will be sending me to another doctor, at their expense, to evaluate me for depression. I told the woman who called me that I didn't like some of the things I was thinking about in the two years since I left Massachusetts.

Perhaps this will be the key to getting Disability and SSI. I'm not going to hold my breath on that, however. I think I will eventually have to leave Oklahoma in order to get benefits if I don't get them this time. I don't think I can go thru all this again. That alone depresses me.

--MorelaterZ--

More COX-2 controversies...*sigh*

Why is it when they find something good for pain, that some shit disturber has to find something wrong with it?

There's now this article from Reuter's that suggests that not only are COX-2 drugs (Vioxx and Bextra primarily) bad for people with heart disease, but a study shows that young women who take COX-2 drugs for a long time, then stop, at some point years down the road, they'll develop heart disease.

Tests on mice suggest COX-2 inhibitors might be especially dangerous to younger
women, who are normally protected by biology from heart disease.

The research, published in Friday's issue of the journal Science, also
supports the theory that there could be a "class effect," meaning that all
brands of COX-2 inhibitors could raise the risk of heart disease.

"I believe the evidence is very strong that we have a class effect to deal with
here," said Dr. Garret FitzGerald, a cardiologist and pharmacologist at the
University of Pennsylvania who led the study.

His team found that a fatty acid made by the cyclooxygenase-2, or COX-2, enzyme protects female mice from hardening of the arteries. Shutting down COX-2 long term may actually kick-start the process, known as atherosclerosis, FitzGerald said in a telephone interview.

"This raises the specter that if we treat long enough, you are going to have some problems with these people," he said.

Okay, then...how young is young? Twenties? Thirties? Women my age? Maybe that info is contained in the Science article itself, but they've only tested it on mice, so how do they know how it will affect humans unless they test on humans? Or is this just a well thought out theory?

I've taken Bextra, but only for a short period of time. I've taken its sister drug, Celebrex, sporadically since I've been in Oklahoma. But, which is worse, the pain I have now due to RA and FMS, or heart disease I might have in 10, 20, 30 years down the road?

Or never.

I just don't know what to think.

--MorelaterZ--

Off to the SSA doctor's appointment

Okay, I went.

As I feared, it was a humungous waste of time.

It was basically a physical exam that had nothing whatsoever to do with FMS. It was stupid little physical manipulation exercises that don't measure how I feel later or how I feel the next day or a few days after. It was a drain on me to drive all the way out there, and a drain to drive all the way back home in rush hour traffic.

I had back spasms this morning driving to the bank. I slept from 9am to nearly 1pm today. I'm still tired and I'm in a lot of pain.

We'll see how this shakes out, but I'm not encouraged by this. This is, I'm afraid, a repeat of the last time I had an exam SSA sent me to.

And now that Bush has been re-elected, I don't see this getting any better.

--MorelaterZ--

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--

This heat will kill me...

It was 97 degrees here in Edmond, Oklahoma today. Hot and dry...and it's this kind of weather that really wipes me out. I don't even have to do anything. Today, I went to the store, took my son Jeff to the mall, and got gas for the van... now I'm achin' something awful. My hands, feet, wrists, and ankles are killin' me, and the rest of my body feels like one big bruise.
 
And, I'm tired beyond belief...but do ya think I can sleep? Helllll, no!  I've gone to bed at something like 4am all this week. The headache is driving me insane!
 
Tomorrow, it may get to triple digits. God help me! And I have to go out in this because my mom has a dentist appointment tomorrow afternoon...
 
Oh.  Joy.
 
--MorelaterZ--

Sleepless

It's baaaack!

I can't make myself sleep at the proper times, and it's because I'm in a great deal of pain. I took the Tylenol PM, so I was able to sleep, but now I'm still tired and dragged out. It doesn't help that it's hot outside, and that I'm still under a great deal stress.

I'm looking into trying to see doctors for free or low cost. I sent in my paperwork to reapply for disability and SSI. I need to get out of Oklahoma, because I will never get benefits here.

I feel the depression creeping back up on me. I can't live this way anymore.

Let me tell you how tired I was yesterday...

I was so tired, so fatigued, that I fell asleep sitting up while I was online...in the middle of the afternoon!!

My sister came over with Amalia yesterday, and I had no clue...because I'm asleep while they were there...

WTF???

I need to get some medical attention for this, especially since I have reapplied for disability and SSI. And the constant pain is more than I can bear on a daily basis. OTC pain relievers are not enough to combat the pain. Last night , I took the Tylenol PM for only the third time since I bought it several months ago. Usually, I'm so exhausted that I fall asleep as soon as I'm not moving for more than five minutes. In the car, I keep the radio turned up loud just to keep me awake long enought to get from point A to point B. Scary!

Help! If anyone knows of a specialist that will see me for free, just for evaluation for SSA, please contact me at babydoll.beretta@gmail.com.
I'm willing to travel anywhere in Oklahoma, Texas, Kansas, or Missouri. IF there is a place not in one of those states I mentioned, but in the USA, that you think is promising, tell me that also. One could say that I am desperate at this point. I just want to live a more normal life.

--MorelaterZ--

The third time is NOT the charm

As you've probably guessed by the title, I was turned down a 3rd time for disability and SSI. I can't tell you how disappointed and devastated I was when I got the letter. I really thought that that hearing was going to be my breakthrough, but it all came down to the lack of recent medical evidence. My most recent exam was one that SSA sent me to in January 2003, shortly after I moved here to Oklahoma.

I made some phone calls, and I may be able to qualify for some research projects for both my FMS and the RA. That may give me the medical evidence I need to get benefits. Meanwhile, I have decided to reapply for both disability and SSI in hopes that SSA will send me for an exam at their expense.

I have also decided that I must get out of Oklahoma. I will find the money somehow to get out of this state. I cannot get state benefits unless I am already on disability (which is stupid, why would I need state benefits when SSA benefits pay more? Even the man I spoke to at SSA said that!). Oklahoma does not have a program that provides temporary monetary support for those people who find themselves unable to work, like they had in Massachusetts. In that regard, Oklahoma is truly a backwards state. Where I'd go, I have no clue. I want to go back to New England, but where I'd stay once I got there, I don't know.

I'm in a lot of pain right now, mental, emotional and physical. This will be the death of me yet... I have to get out of here!

--MorelaterZ--

SSA doesn't care if I'm broke

...I still have to wait for the results of my hearing like everyone else.

When I called SSA today, their primary computer system was down. All the rep could tell me is if my case was still open or not. It's still open (but I knew that). I told her that when I called a month ago, my case was with the decision writer. She told me that some judges stake up to six months to make decisions. Well, if it's with the decision writer, I asked her, wouldn't it make sense that the judge has already made his decision? She had no answer for that.

I'm still going to call back next week. I gotta get some real answers somewhere.

--MorelaterZ--

Okay, it's this:

Subject: 1.01 What is CFS?
(text from cfs-news.org. Text in bold is mine, as well as the comments.)

Chronic fatigue syndrome (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV). (Stef: Well, damn, they make it sound much worse with that name!)

The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.

The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.

Something interesting I found by chance

I was looking over the referers from one of my other blogs and was led to globeofblogs.com. Someone was looking under the letter "M" and ran across ~*Mi Vida Loca*~. I clicked on the link that was left on my referers list and took a look at some of the other blogs listed there, and saw this one. It's by a man in Great Britian that has CFS, so I went to his blog to see what he had to say. One of the links on his blog led here, though I couldn't find anything to explain was "ME" was. Since it was paired with CFS, I wonder if it's fibromyalgia known by another name. The symptoms are similar to FMS and CFS. I intend to search further to see what the real story here is.

--MorelaterZ--

The waiting is the hardest part

I'm getting ready to go to bed. I've been extremely fatigued, sleeping during the day for two and three hours at a time. But, a new wrinkle has appeared: I actually get to bed at a decent hour, but get up two and three times a night to pee. I've haven't had to pee this much since the carnival, so I think it's nerves. God knows that the stress level around here is in the red, so my nerves are shot.

ANd my constant companion, the all-over pain, is still driving me up the proverbial wall. Today, I was holding a glass of ice water in my hand and I could feel the pain in my hands start up. It seemingly went from my hands, up my arms, down thru my torso, all the way down to my feet! All from holding a glass of cold water!

Still nothing from SSA. The end of the month is in two weeks. Please, Lord, let me hear some good news! It's been much too long-- it'll be two years in September since I applied for Disability and SSI, and if I have to go thru this all over again, I think I might cry. The idea of having to go back to work, then not being able to perform, scares the crap out of me. I've always prided myself for being a hard worker, being a reliable employee, and not being able to keep up because of the pain and fatigue, saddens me. What happened to my old predictable life? The only good thing about not being able to work is that I was able to go to the carnival that day in July two years ago and meet my Cajun. He's been supportive and understanding of all this, even if he doesn't understand the whys and hows of it. It's hard to do that from 800 miles away, but it's the way it has to be for now.

--MorelaterZ--

*sigh*

I've been in a great deal of pain today. My right arm is sore for no reason that I can figure out. I'm still sleeping way too much, and I've been down in the dumper all weekend, again for no reason that I can see. That may be for a myriad of reasons ranging from the fact that my son is going off to college to my mother's dramatics to unresolved personal issues...or something else that I haven't considered.

Still having the all over pain, some days worse than others, but still there nonetheless. Not even Tylenol helps it subside for even a little while. The last day I felt good was May 21st, the day of my college-bound son's HS graduation. Today is definitely worse than last week, for example.

I still haven't heard about Disability. I can't call again until the end of the month if I haven't heard by then. I don't know what I will do if I don't get it again this time. Reapply, I guess. I get so discouraged about it, that I need the money to see doctors so I can maybe someday go back to work. I want to work, I just can't right now. I need to see doctors, but I can't work. It's a catch 22...and I'm suffering for it.

--MorelaterZ--

Since I last posted, here's what's been goin' on

The weekend was bad, but not as bad as I feared. I was exhausted from just doing mundane things like the laundry. I think I got thru the graduation ceremony because I took Tylenol before I left. The drive home was hard because I was trying not to fall asleep. I really should have let Jeff drive.

Since then, I've been sleeping at all the wrong times, getting extremely tired soon after I get up in the morning. Everything is hurting, and the stress from living with my mother is really starting to get to me. She's having money problems and I, not being able to work and contribute, am getting the brunt of my mother's melodramatic attitude. I'm sure she thinks I'm not trying hard enough to find a job, or trying to find out about the status of my hearing, or whatever. I'm just not trying hard enough in her opinion.

I have called again about the results of my 4/20 hearing, and it's still with the "decision writer". I don't know if it's taking so long because there are a lot of cases, or because I'm going to be turned down a third time. I was told that I should call back at the end of June if I haven't heard anything. I just want to know, so I can reapply if need be.

I heard from Saon this week, and he's planning on leaving Minnesota sometime in the next couple of weeks. So, of course, I'm worrying about him. He was so depressed on the phone.

Now, I'm feeling tired and worn out, like a wet rag. My symptoms only get worse when it's hot outside. It's in the low 90's today, with more of the same for the weekend.

I live in Oklahoma...and tornadoes stress me out. It's tornado season here.

--MorelaterZ--

I survived Graduation

...let's see how I do over the weekend.

I'm sore now, and my hands are killing me. Typing is taking a great effort. I'm tired but can't sleep, and I'm scatterbrained. I'm lucky I remembered where I parked the car.

I find myself alternatively weepy-eyed and on the verge of all out rage. I don't understand any of that at all. Is there another problem here that I am not aware of?

God help me.


MorelaterZ--

Gettin' by with a little flare.

This flare is the worst one I've had since the fall of 2002, when Saon came to live with me. At that time, I didn't know to call it a "flare", I just called it a bad day, or a bad week.

But this is the most pain I have been in since before my diagnosis. My hands, wrists, feet and ankles are killin me from the RA, my left knee and back from the OA and everywhere else by the FMS. I've actually had to take the Tylenol PM I bought a couple of times, but I was still sleepy from the effects all the following day.

I can barely write my name, I have headaches that I've never had before (I think they're migraines because they make me sick to my stomach they hurt so bad), and I'm just fatigued beyond belief. Just thinking about doing things wears me out. I don't know how I'm ever going to get thru my son's graduation on Friday. Even if I do get thru it, I will be exhausted for the rest of the weekend.

I just can't live my life like this. I used to be active and do things. Now I feel quite useless and redundant. I hate feeling like this. I want my active, can't wait to go out and do things life back! I don't want people to not believe I have this problem, or to feel sorry for me, or just not understand what I am going thru.

I want someone else to talk to about this besides my 18 year old. He's got a lot to think about and do now that he's going to college in the fall. The last thing he should be worring about is his mother and her medical problems.

Help me. Please, someone...

MorelaterZ--

New therapy helps chronic fatigue patients improve life--

From KFOR Channel 4, Oklahoma City

MEG ALEXANDER reports

Updated: May 14, 2004 9:01 AM

You may think of chronic fatigue syndrome as an illness that makes the body tired. But many patients and researchers will tell you the disease also wears out the mind.

Now, a new therapy is helping patients gain a better quality of life and a sense of control over this often-frightening illness.

It looks like a video game, but instead of fighting aliens, Polly Little is fighting an illness, chronic fatigue syndrome. It's a mysterious disease that debilitates both body and mind.

"I wasn't even able to do simple things like giving a store clerk the right amount of change," said Polly Little, a chronic fatigue patient.

The video is actually part of a therapy called neurocognitive feedback that works to retrain abnormal brain waves researchers believe are responsible for the memory and focus problems many patients such as Polly experience.

"It's like a physical therapy exercise program for the brain," said Dr. Myra Preston, a neurophysiologist.

The key is a brain map that documents the brain wave irregularities and tracks the progress of the therapy. Preston patented the mapping method.

"The brains of chronic fatigue patients look like those of people who are asleep," she said.

Patient Judy Noblitt is having her map updated, so Preston can see if the feedback therapy is working.

Like many chronic fatigue Judy quickly gives out and can't complete the mental tasks given to her, it's a symptom common in chronic fatigue and one that often leads to misdiagnosis.

"They say you're depressed, you need to see a psychiatrist, there's nothing really wrong with you," Noblitt said.

But the abnormal brainwaves on Noblitt's brain map tell a different story. Her sleep waves dominate her brain activity while she's awake. But the map also shows feedback therapy is helping her sleepy brain stay awake longer.

"Overall, Judy's brain is functioning about 40 percent better," Preston said.

Preston notes the map and therapy can't cure the brain wave malfunction, but they can help patients like Judy and Polly gain a better quality of life.

"I've been able to get off quite a few of my medications, and no other treatment that I've done have I been able to do that," Little said.

These are victories that are helping these women regain control over their lives.

Preston said her chronic fatigue patients average about 60 1-hour neurocognitive feedback therapy sessions. There is also a home unit available.

This I've got to see...

The NBC affiliate here in OKC is going to run a report tomorrow about how to "beat" CFS. Is this going to be a major breakthru, or something that works only for a select few CFS patients? I figure that if it were a major breakthru, we'd have heard some news about it long before now.

So I will watch this with an open mind. However, to implement any kind of treatment, I will still need money to pay for it. Kinda hard to do when you're broke.

I called the hearings office yesterday, and was told that my case is now with the decisions writer, and that I could expect a response in as little as 2 weeks, or as long as 2 months or more. Every day that I don't get treatment for this sets me back even further. God only knows what damage has been done in the interim. The pain from the flares (which seems to be more frequent now) is going to drive me insane. Quite literally insane.

I'm praying hard that I get approved. First and foremost, I need to get this under control so I can get on with my life. Now that Jeff's been officially accepted at OU, I need and want to be able to assist him financially, and being approved for Disability and SSI can do that, because as long as Jeff is a full time student, he'll get a check, too. It prolly won't be much, but it will be something.

MorelaterZ--

I'm in pain...(painpainpainpainpain...)

All I did was sit for 20 minutes at the library, and i'm paying for it now. I hurt so much that I was in tears by the time i got to the car.

Lord, I need to be approved for Disability and SSI...I need to get back to seeing doctors who can help me cope with this. This will drive me insane!

And do you think I could work like this? I know I can't. Who would hire me if I'm in so much pain after only 20 minutes?

How am I ever going to get through Jeff's graduation ceremony? It's going to be at least 4 hours long! They'll have to carry me out on a stretcher...

I don't want to think about that for now...

MorelaterZ--

I meant to post this here, not in the other blog

(and i'm so scatterbrained, I posted this before I was ready...)

Jeff and I did the mall thing again today. He wanted to look for a book (some anime thing, I'm sure). I walked around. Graduations in three weeks so I was kinda half heartedly looking for ideas for gifts. When we got home, I went upstairs to watch TV and I fell dead asleep for three and a half hours! I felt tired, but I didn't realize I was THAT tired!

Still have the cold, and it's settled into my vocal chords (oh. great.) so I'm a little hoarse. Still achy though, so I'm sure now it's not from the cold. It's a damn flare. My back still hurts, and I can't think straight (and apparently I can't spell my way out of a paper bag today because I've been correcting every other word as I type).

And, because I slept so soundly today, I'm awake now. Lovely.

MorelaterZ--

Getting a lot of good vibes (and advice) here

There is a FMS/CFS support group at Yahoo! Groups that I've been following. I've gotten some support and helpful advice there in the past week or so.

But, Lord, why couldn't I have found this group a year ago???

I really am going to bed now...

MorelaterZ--

but it's the waiting that's gonna kill me.

Nine days since my hearing. Right now, I have this killer cold, and I'm achy. I don't know if I'm coming down with something other than a cold, or it's an FMS flare. I'm betting on the flare, though. My lower back has been unusually stiff today. That concerns me because when my back gets that way, I'm going to have muscle spasms at some point and will be unable to move or do anything.

I just want to know if I've been turned down a 3rd time, or what. I was told it might take some weeks to find out the verdict. After all the waiting to get this hearing, waiting for the decision is going to stress me out, which will not help my symptoms one damned bit.

I gotta go to bed. I just got extremely sleepy.

MorelaterZ--

It went well...

The SSA hearing lasted a little over an hour. The judge was rather nice and wasn't condescending (unlike a couple of the lawyers I spoke with prior to this hearing). He asked me questions, had me describe a typical day, what my work history was like before I got diagnosed with FMS, the kind of jobs I thought I could still perform (honestly, your honor, none, I told him). Then an occupational expert testified about the types of jobs that my skills could transfer to, if I could hypothetically still perform these jobs based on hypothetical situations ("if I reduced her work time from eight hours to four, could she still do these jobs?" "...from four to two hours..." etc.). Then (and this is good...), the judge asked the expert "if she were working, but missed quite a bit of work because of her disability, would she still be able to keep her job?", the expert said, no, because according to the DOT, a worker could only be absent one day a month. Any more than that, and it beomes a dependibility issue. My question was, if I could only work one or two days a week, what employer in their right mind would hire me?

Still, I don't hold out any hope of getting approved. The judge understood that because I had no income, I couldn't afford to see any doctors to get treatment for FMS. If I do get disability and SSI, I will be quite shocked and surprised and extremely happy. I would go out and restart treatment so I could go back to work someday. I can't retire for 27 years, so going back to work would be a priority in my life. It's just right now, I can't work for more than an hour without pain.

Right now, I'm in pain, so I gotta go.

MorelaterZ--

From Mi Vida Loca

Tuesday, April 06, 2004

Getting my sleep on
...or not.

Welcome to the 16th consecutive year that I have been unable to get a decent nights sleeep. What happened in 1988 that caused this? Car accident in El Paso, TX perhaps. It makes sense. To me anyways.

FMS causes you to be unable to sleep. Depression causes you to sleep a lot, usually at the wrong time of day. Imagine having not gotten enough sleep but are still expected to go to work, school, or appointments. This has been my life for the past 16 years.

I know I need help with this, but, like other things in my life at present, it requires money I don't have.

End rant.

MorelaterZ--



March 8, 2004

I am concerned about my health. I sleep all the time, I don't feel like doing anything, and I am not keeping myself up the way I alwyas have. It's almost like I just don't give a damn about anything any more. I need to see someone soon...or God only knows what may happen to me.

I can't talk to anyone about this, because they'll just blow me off. They'll tell me to go out and get a job. I have to get out of Oklahoma, or I will literally go insane. I don't know if a change in location will help me, but being treated like shit by my family is more than I can bear. I feel like I am imprisoned here.

I know I'm depressed. It's a feeling I know all too well. And it scares the shit out of me.

MorelaterZ--



February 22, 2004

I'm going crazy! Get me the hell outta here!

I've just about had it with everyone and everything that has to do with my staying here. Between my mother's apathy and my sister's bitchiness, I'm just about at the breaking point.

The big losers here would be the boys.

But as long as I stay here and am not able to find a job, I am just a burden on everyone. I don't see any way I can stay here any longer. I might end up in the loony bin before long.

I can't take this anymore. It's not like anything that I expected when I came here. I thought I'd have no problem finding a job. I thought that I could get disability from Social Security, but that is a long, drawn out process. I might have a hearing as soon as next month, but who knows?

All i know at this point is that when I get some money and take care of some obligations, I'm leaving Oklahoma, and I won't return until I can take care of myself. It's better for everyone all around if I do.

Go anyway?

I called the SSA today, because I was concerned about the lack of medical evidence in my case. I already know that the ruling will not be in my favor. The woman who finally answered my call told me to explain everything I explained to her to the judge next Tuesday, and maybe he'll be able to suggest something for me to do to get the medical care I need, despite my lack of funds and medical insurance.

This does not do anything to put my mind at ease, but that just may be me overreacting again. Maybe this will be a good thing. I could really use the financial help more, but maybe this'll be a major stepping stone to getting the SSA to see that I am really too disabled to work right now, but with treatment, perhaps at some point I could go back to work.

MorelaterZ--

Living with FMS

By Bruce Campbell, CFIDS/Fibromyalgia Self-Help
Program: CFIDSselfhelp.org. Reprinted with permission.

What are the most important things to remember in
coping with Chronic Fatigue Syndrome or
Fibromyalgia? We asked that question of several
groups of people participating in our program.
Specifically, we asked them to imagine that a
newly-diagnosed CFIDS or fibromyalgia patient
approached them for advice, asking what three or
four things they had found most helpful in coping
with their illness.

Their responses clustered into six themes. About
two-thirds of people mentioned one or more aspects
of the following three ideas:

1) Accept Your Illness

Whether you have CFIDS or fibromyalgia, your illness
is real, physical, and long-term. Getting it was not
your fault. While your should accept that your
illness is long-term, you should also be hopeful
because there is much you can do to improve your
life. Rather than fighting your condition, be
compassionate toward yourself as someone with a
serious illness.

As one student said "the single thing that has
probably helped me most with living with my disease
is accepting that I have a chronic illness. Since I
started to plan my life around my illness, my life
seems to have improved. For a long time, I was in
denial of my disease and lived in hope for the day
it would just go away. My life seems better since I
accepted that I have to adapt to the illness."

Another student emphasized the challenge of
adjusting to loss. She said that a new patient is
likely to go through a grieving process before
reaching acceptance. "We grieve the losses this
disease has caused in our lives. Our lives are
drastically changed by our illness."

2) Live within the Limits of the Illness

Adjusting your activity level to the limits imposed
by the illness is one of the most helpful coping
strategies you can use. In our course, we call it
"living within the energy envelope." The idea is
that we have less energy than before. If we try to
do too much, we usually trigger an intensification
of symptoms that forces us to rest. In contrast to
living life on this roller coaster, we can gain some
stability if we learn to live within our limits. To
do this, you need to learn to listen to your body
and respect its needs. Having limited energy imposes
the need to simplify and to prioritize. By pacing
yourself (balancing activity with rest) you can gain
some control over your illness and bring stability
to your life.

One student summarized the idea of accepting limits
by saying she would advise "setting priorities,
really getting down to basics and saying no to
activities that do not fall within our personal
agendas. It is essential to preserve our energies
for activities that help us get better. This becomes
most difficult when we hate to disappoint special
people in our lives, but we must remember that if we
do one thing, we can't do another."

Another said that she believes the key to living
successfully with chronic illness is to adapt life
to the illness, and not just as a short term
strategy. Looking back, she believes she clung to
the idea of getting better too long. "I really
needed to be told, life will not be the same. I
needed to learn to manage my life from that point
on, very carefully, much as diabetics and others
with chronic conditions do."

3) Get Support

Chronic illness can be isolating and demoralizing.
Others may not always understand or sympathize.
Having people in your life who acknowledge your
suffering and offer support can be crucial. Seek out
support from fellow patients, who understand because
they share your situation. Stay connected to family
and friends to the extent possible, but be realistic
in your expectations. Some people may never
understand.

A third to half of those responding mentioned three
other themes:

4) Keep a Positive Focus

Though there is as yet no cure for either illness,
improvement is a real possibility. Through your
efforts, you can gain some control over your
illness. Regardless of your situation, it is
possible to lead a meaningful life, so value and
take care of yourself. In the words of one student:
You have a choice in every situation. You can be
defeated by it or learn and grow from it.

5) Educate Yourself

Many treatments are used for the two illnesses, with
new developments occurring all the time. No cure has
been found to date for either illness and no
treatment has proven widely helpful. Seek out
information and options about the illness.
Experiment to find what works in your individual
situation.

6) Rest Daily

Integrate regular periods of rest into your day,
regardless of how you feel. (In the course, we call
this "pre-emptive resting" or resting as a
preventive measure.) By taking scheduled rests-lying
down with your eyes closed in a quiet place-you may
be able to prevent flare-ups or reduce their
intensity. Such rests can help lower symptom levels
and increase a sense of control.

Other Themes

Other themes mentioned included getting exercise and
avoiding stress. A surprising result was that only
about one person in ten mentioned medical care as
being important to their coping.

Summary

In summary, members of our groups think that the
foundation for coping with CFIDS and fibromyalgia
lies in the combination of accepting the long-term
nature of the illnesses, adjusting one's life to
live within the limits imposed by illnesses, and
having supportive relationships. They also believe
that a hopeful attitude is both realistic and
effective, and that self-management includes
education about the illness and experimentation to
find what works in an individual situation.