FMS stands for Fibro-Myalgia Syndrome. If at this point you are saying, "Oh, Fibromyalgia, I know what that is" -- with all due respect, No. I doubt that what you have heard about fibromyalgia has much to do with how this condition affects me. Please read on to learn about a new understanding of FMS.

The diagnosis "fibromyalgia" has been around for decades, but very little is known about this illness. Even the name is a mistake, dating back to a belief that it was a disorder originating in muscle tissues. To make matters worse, outdated and discredited theories about FMS are still rampant not only among laypeople, but among health care professionals and medical doctors. If I tell people that I have "fibromyalgia", they often think they know what that means, when in fact their pre-conceptions are totally incorrect in my case. It's worse than having a disease that nobody has ever heard of: at least then I could educate people from scratch. Furthermore, many other people who have been diagnosed with FMS have a completely different history, different symptoms, and different results. What a frustrating situation! If what you read just leads to more questions, please scroll to the FAQ below.

OK, on to my explanation. FMS is a disorder where the primary problems are: 1) a sleep disorder characterized by excessive REM cycles and insomnia; 2) hormonal imbalances; 3) blood coagulation and mitochondrial dysfunction; 4) a compromised immune system and latent infections. The scientific theory isn't mine, it comes from Dr. Kent Holtorf, who taught the MD who diagnosed me. See the link to Dr. Holtorf's own site in Resources. I find Dr. Holtorf's explanation most accurate and useful for understanding FMS as it affects me. This summary and any errors in it are my own.

HOW FMS AFFECTS PROCESSES IN THE BODY

As you can see from Dr. Holtorf's chart above, FMS begins with a genetic predisposition to developing one of a family of disorders. The second step in unleashing the cycle is a triggering event of "physiological stress". Note "physiological," this is very important because people commonly confuse this, believing that it's psychological stress that is the root cause of the illness - not true. Also, it is simplistic to think that there is a single, demarcating "event." Although some patients report an illness that they never recovered from that began a cascade of symptoms, this is not the case with me. For me it has been a lifelong condition with a slow decline as symptoms became more severe. In speaking in more depth with some patients, I think of their "triggering event" as a "tipping point".

Next there are 3 processes in the body that become dysfunctional: Sleep Disorder, HPA Axis Dysfunction, and Immune Dysfunction. HPA Axis is harder to understand and describe, so I will just point to the other two to show how the entire body system becomes affected.

A Sleep Disorder develops that robs the body of levels of sleep that are required to perform the body's production of hormones, to rest and to repair the body. Because the patient is asleep, but not in deep restful stages of sleep, the common experience is that the patient wakes up after 8 hours, still tired and unrefreshed and feeling like they didn't get enough sleep. This is the origin of the oppressive fatigue that FMS patients feel. Meanwhile, there are regenerative functions -- repair of tissues, hormone production, etc. -- that the body only performs during the deeper levels of sleep. Without enough deep sleep, the body begins to run a deficit in these hormones. In order to try to keep balance, the body begins "stealing" hormone building blocks from other systems. It may take a long time before these hormone imbalances manifest in conditions that are identifiable by a patient or physician.

An Immune Dysfunction develops that disturbs the body's natural defenses. Autoimmune conditions develop where the body begins attacking itself, leading to a diagnosis of one or more autoimmune diseases. Meanwhile, the immune system is suppressed, with inadequate levels of natural killer cells, IgA, or other essential immune defenses. The immune system is not strong enough to neutralize an infection, so infections linger in the background further compromising the immune system. The patient has lowered immunity and therefore begins an ongoing round of illnesses -- this is the person who "catches everything" and is frequently sick.

The Cascade of Dysfunction, illustrated above, shows how each problem affects another process, and how these dysfunctions create cycles that feed on each other. As you can see from all of the functions that are involved in FMS, the symptoms that are typically associated with FMS, such as chronic pain, are an end result that is far along this chain. A widespread symptom such as pain can be seen to begin in the disregulation of hormones during sleep, in the HPA axis dysfunction that affects how the brain processes events, and continues to be influenced by everything from nutritional deficiencies to cellular energy production problems.

WHAT DOES THIS CYCLE FEEL LIKE?

A shortcut "symptom list" for FMS includes:

Burning or sharp pains in muscles or deep in joints, often for no apparent reason
Chronic pain that does not respond adequately to pain medicine
Frequent colds, flus and other infections illnesses that hit harder and last longer normal
Waking up many times during the night
Inability to fall asleep, often due to pain or other illness
Inability to wake up on time or stay awake
Daytime sleepiness that resembles narcolepsy in its rapid onset of sleep
Extreme Fatigue (being "tired all the time")
Weight gain and difficulty exercising due to fatigue and pain
Muscle tightness and spasm pulling the skeletal structure out of alignment
Torn tendons. ligaments or connective tissue injuries that will not heal
Digestive problems
Memory loss, confusion, inability to concentrate ("Fibro Alzheimers" it is sometimes called)
Extreme sensitivity to environmental stimulus: heat, cold, humidity, light, noise, and touch
Depression, anxiety and irritability (these are listed as symptoms but can easily be linked to the physical symptoms)

Symptoms vary depending on the individual. The symptoms appear so unrelated that it is difficult for the patient to tell what is a symptom of FMS and what is normal or unrelated. While it may seem at first like a person with FMS is complaining about everything, my experience after talking with many FMS patients is that most greatly underreport all their problems, because they don't want to seem like "complainers" or "hypochondriacs", or that they get used to ignoring or keeping a lot of their physical illness to themselves.

What does FMS really feel like? Imagine this:

Imagine the last time that you had a terrible night's sleep, waking up repeatedly. Imagine how you felt the next day. Or if, you are not disturbed significantly by missing one night's sleep, imagine not being able to sleep and rest, night after night.

Imagine the last time you had the flu -- overall body aches and pains, fever, fatigue, infection. Now imagine feeling that way for the rest of your life.

Imagine one system after another of your body shutting down or malfunctioning -- your digestion, your breathing, your circulation, etc. etc. Imagine being susceptible to every infection, the ones that pass your family and co-workers by.

Imagine your illness lasting day after day, not getting any better. Imagine not having any reason to hope that tomorrow will be any better.

That's what it feels like to suffer from such severe FMS. That's what patients like me are dealing with every day that we get out of bed and interact with the world.

There is a high correlation between having FMS and having depression (a connection which I discuss in more detail in my blog). Having just read about this illness, aren't you amazed that some people have FMS and yet DON'T get depressed?

FAQ

Q: My friend has Fibromyalgia, and her symptoms/progress/treatment/explanation is completely different than what you have written above.

Your friend is absolutely right about her condition.
Why do I say this? Three reasons.

First, as the "Cascade" above illustrates, the symptoms of FMS will manifest in each individual based on genetics, lifestyle, other illnesses and conditions. Therefore individuals who are diagnosed with FMS can have a wide range of symptoms. Your friend can have a certain progress to her illness with certain symptoms at the forefront, my case is different, and yet other individuals describe their situation differently than either of us. And all are basically correct.

Second, let's take a closer look at the group of patients currently diagnosed with "Fibromyalgia." With the misconception that Fibromyalgia is not distinct syndrome but a catch-basket for all other unexplained chronic pain, sloppy or misguided clinicians will "diagnose" someone with "Fibromyalgia" who does not fit true FMS diagnostic criteria. Conversely, many patients who DO fit the criteria remain undiagnosed because their doctor does not recognize their symptom pattern. And furthermore, the "tender point test" that is the key diagnostic test for FMS, is highly dependent on the doctor's skill level for precise performance. Doctors who perform this manual test incorrectly further skew the results. So who are all these patients who have all been told that they have "FMS"? In likelihood they are a group of patients with a similar set of symptoms, but who in actuality have a number of unknown diseases which are all currently called "Fibromyalgia." If there are, say, 3 or 4 distinct illnesses which are currently lumped together as "Fibromyalgia", then it makes sense that current "Fibromyalgia" patients present with different symptoms, histories, disease progress and also that a treatment protocol that works well for one of the illnesses does not effectively treat the rest of the group. Suppose for example that everyone who sneezed (symptom) was told (diagnosed) that they had a cold. Cold medicine and rest would clear things up for all those people who did have a cold, but would be frustrating and useless for those who really sneezed because of allergies. Both colds and allergies really do exist, and they do have similarities, but you can see how calling all sneezing conditions "colds" would further confuse why some people got better and some didn't. That's the state of affairs with the Fibromyalgia diagnosis today.

Third, very little is known about FMS compared with how many unanswered questions remain. Because of all of the unknowns, many of the theories of the cause, progress and treatment of FMS are based on spotty research at best. To my knowledge there are 7 main theories and related treatment protocols for FMS (not counting the completely fraudulent). Given what little is known of the illness, combined with the likelihood that there are several different illnesses all currently under the label "FMS", it should be no surprise to find that different explanations and treatments each work for a certain subset of patients. There are so many strident arguments about the "right answer", which I believe contributes to making other FMS patients feel invalidated. I am not choosing a "right answer" over others by presenting Dr. Holtorf's theory above. This is the theory and treatment that works best for me, given my experience. I share it also because many FMS patients have not heard of this theory, and it may help them. If a different treatment and theory is better for you, then by all means choose whatever helps you the most.

Q: Isn't FMS caused by excessive stress?

Well, I don't know of any chronic conditions that are improved by excessive stress loads! But that's very different from saying that stress "causes" the illness.
Much of this belief is based on patients who had a very exciting, intense, high-stress lifestyle before their illness took over. This lead others (and sometimes patients themselves) to blame their previous lifestyle for the illness. If this philosophy helps remind a former-type-A patient to get the rest they need, then good. But often it is a very punitive belief system, with a root in trying to find a cause for this mysterious, overpowering condition in something the patient "did to themselves."

Scientifically, there is a great deal of debate about the role of stress. I am completely unconvinced of the "stressful lifestyle" arguments about Fibromyalgia.
For one thing, they confuse "psychological stress" with "physiological stress".
Psychological stress is often subjectively measured, and measured in hindsight. In other words, when we look back on our lives, we will probably be able to pick out many overwhelmingly "stressful" occurrences, if that is what we are looking for. This does not measure how the body responded to that particular experience.
Certainly the Type-A patients garner the most attention because we complain loudly, we fight to "do SOMETHING!" in typical Type-A style, and the contrast between previous and current life is more dramatic. This just makes me wonder if FMS is under-diagnosed and under-treated in the quieter, slower Type-B personalities.

Simply, I see many, many more people who have experienced far more physical and emotional stress, who do not have this disease pattern. Many many more people who thrive as high-pressure type-A's. And many many FMS sufferers whose patterns did not fit any "stress" explanation.

Just ask yourself how this stress belief serves you. If it helps you find a reason to slow down and take care of your body, great. If it serves to keep up a belief system that involves guilt and blame, then challenge yourself to think beyond that.

Q: Why haven't you tried this amazing miracle cure XYZ that I sell/worked for me/saw on the internet?

Oh, this is the most painful question I get. I am sure that you are only trying to help, and I thank you for your positive intent. But the answer is NO.
I have tried many, many different types of treatments, lifestyle changes, etc. in my quest to live the best life I can.
I have found what works best for me (based on the Holtorf system above).
Each person finds their own answer based on their symptoms and their body, and after all I have been through I know what works best for me at this time. Thanks for respecting that.

Q: If so little works for Fibromyalgia and there is no cure, then why are you bothering with this treatment program?

The good news is that A LOT can be done to treat the life-altering symptoms and correct the Cascade effect that takes over more and more of the body. Pain medicine, hormone treatments, sleep medication, and more, all done together in a concerted effort to correct FMS's effect on the body - this protocol can make a dramatic difference in quality of life.

Ironically, just when I had finally gotten an accurate diagnosis and a good treatment protocol developed - just then, my insurance, my savings and my ability to work all ran out.
In the 3 years since I've been able to afford specialized healthcare, I have experienced a DRAMATIC worsening of symptoms.
So close and yet so far!

That is why I am raising money now to pay for a couple of years of steady, continous, quality FMS care. I have so much more I would like to contribute to the world, and I desperately want another chance to really live again.

To find out more, please see my PLEASE HELP page.