Is Fibromyalgia Real?

This morning as I was going through my email, I noticed a web article dealing with Morgellons Disease. The primary message of the report was contained in one line; “Morgellons is not an official diagnosis. Rather, it’s a collection of unexplained symptoms including abnormal sensations that sufferers describe as the feeling of insects crawling on the skin.” The CDC reported that an initial study of 115 persons who complained of the symptoms did not find an infectious or environmental cause. “Rather, Morgellons is likely to be a mental illness and should probably be treated with the same drug and psychiatric care that works for people who suffer delusions, researchers with the U.S. Centers for Disease Control and Prevention said Wednesday.”

The statement above is not atypical of statements which are made on the basis of an assumption or assumptions which may or may not be valid. Just because an initial study of 115 patients failed to identify a causative organism (infective agent) or environmental cause does not necessarily justify the non-scientific judgment that (it) Morgellons is likely to be a mental illness (at best, or worst, the word likely should be changed to possibly).

First: The conclusion that there is no infectious or environmental cause, carries less than a 100% confidence interval. Were all possible infective agents tested? Were all possible environmental causative agents tested? Were all of the possible causes tested under all possible conditions and combinations? Can we even conclude that we could define and produce in a controlled environment, all possible infectious and/or environmental causes?

Second: There are a number of disease causing conditions which are not dependant on an infectious or environmental cause. For example there are a number of known, defined, and recognized auto-immune conditions which are not dependant on an infectious agent or environmental factors. Many sufferers of most of these conditions experienced a phase or period before these conditions were recognized when statements similar to those above were made about the conditions they were experiencing.

Invariably, the dis-ease exists and is experienced well before the disease is recognized. When that fact is ignored and unsupported suppositions and assumptions are expressed as fact it understandably leads to discouragement and frustration among those who suffer from one of these conditions as well as their friends and loved ones.

The main symptoms of fibromyalgia include widespread pain. Fatigue is also another aspect. Anxiety and depression can occur alongside this. Since it’s a syndrome and not a disease you might not have every one of these symptoms. There are also a few lesser known ones that might throw you off track. This is why you should look to your doctor for being diagnosed.

While rheumatologists initially treated and diagnosed the disease much more often now neurologists also have a role based on new research. A lot of these diseases overlap with the symptoms so that now instead of people asking “Is fibromyalgia real?” a more general question is “Is it actually fibromyalgia?”

In 2010 a change to the diagnostic criteria for the disease was proposed. It used to focus solely on pain. Now the pain in each quadrant is supposed to be rated on a numerical scale and then you get a point on a scale. This scale also considers fatigue and still feeling tired after waking. There’s also a list of other symptoms that your doctor can take into account like changes in your cognitive thinking or tingling. Like the old criteria this one requires the doctor to rule out any other illnesses that it could possibly masquerade as.

While these following don’t technically classify as symptoms they do often occur next to fibromyalgia. It could be a secondary disorder. Many patients claim problems with both chronic headaches and migraines. I haven’t had this problem but it makes me wonder if the sensitivity to light and sound that many fibromites complain of is experienced more during migraines.

TMJ: When I meet new people with fibromyalgia I find that many of them also have Temporomandibular Joint Disorder. When my jaw started clicking and becoming painful my doctor didn’t find it to be related to fibromyalgia. I had to go to an orthodontist to get my TMJ diagnosis. Usually this comes after being in an accident. However, my personal non-medical based theory has to do with my constant muscle tension. Until my orthodontist pointed it out I had no idea that I was constantly clenching my teeth which is probably my natural reaction to not feeling well. This can be a serious issue if left untreated. I was told to try to be more conscious of this, relax, and was also fitted with a night guard. While this hasn’t cleared it up entirely it has kept it from getting worse.

While there are technically only a few main symptoms I’ve never forgotten what one doctor told me when I went in complaining of something that wasn’t on any symptom list. He said “You have fibromyalgia, what do you expect?” He was using it as a fall back for anything that would happen to me, basically implying that it had a full range of nasty surprises in store for me; most of which wouldn’t be explained by anything other than the fact that I’m sick. Another doctor put it much nicer when he said that I was basically a medical marvel. While this person isn’t my doctor any longer for obvious reasons it does show the wide range of problems that can occur from either lack of sleep or being in constant pain. This may occur whether it’s a main symptom of fibromyalgia or not.

When I was diagnosed with fibromyalgia more than 15 years ago it was a surprise. I had been handed endless pamphlets on every other disease in the 5 year process of trying to find an answer to why I never felt well. I had been through countless tests and usually knew what they were looking for. In this case though the doctor suddenly just told me that I had fibromyalgia because we had officially ruled everything else out. Instead of asking “Is fibromyalgia real?” a better question is “Is it fibromyalgia or something else?”

This has to do with the tendency of fibromyalgia symptoms to overlap with so many other disease that it’s difficult to get a concrete diagnosis. Some research has suggested that as many as 10-30% of patients who walk through the door have at least some of the symptoms of this syndrome. (I’m not a doctor but instead a patient just relating my experiences.)

The Scary Stuff

This can mimic some very serious illnesses. The pain, fatigue, intestinal problems, and depression might point to Multiple Sclerosis or Lupus. You may need an MRI to rule these out. This will probably be the most nerve wracking and intensive part of the whole process.

Lyme Disease

I’ve heard many people in alternative medicine claim that all fibromyalgia was actually Lyme disease. This lost its validity a little bit when I also heard people claim that all Lyme disease was undiagnosed fibromyalgia. If you do have Lyme disease then the treatment varies depending on how long it’s been since you contracted it. I’ve also heard the same people argue over the accuracy of a Lyme disease test saying that it’s very difficult to track down if it’s in a chronic state.

Mysofascial Pain Syndrome

This is a syndrome that is very close to fibromyalgia as far as the diagnosis. There’s only a little difference between trigger points or tender points. It depends on whether you twitch during the exam or if there are lumps underneath the skin.

Chronic Fatigue Syndrome

If you have the tender points and pain is your biggest factor then this is what is going to differentiate these two diseases. They are just that close together.

Secondary Illnesses

The presence of secondary illnesses can also throw a wrench in the diagnosis process. I was originally diagnosed with Crohn’s Disease even though I did have a lot of the pain and fatigue of fibromyalgia. However, since the intestinal problems were so severe it was the main thing that I was treated for.

In fact I didn’t even find out that I had fibromyalgia syndrome until the Crohn’s symptoms abated and I still didn’t feel well. That meant I had to work with the doctors again to find out was going on. If you have some symptoms that don’t fit under the spectrum of this then you may actually have two or more conditions which is pretty common with fibromyalgia.

The thorough confusion of what this may or may not be is why this isn’t an area for self-diagnosis and proper and consistent medical care is so vital.

When asking “What is fibromyalgia?” you’re probably going to get a lot of different answers. The doctors are going to be the best at referring you to the right specialist and giving you the right treatment. You will hear a lot of conflicting opinions even doing online research and you will come up with several different answers. It’s a syndrome that we don’t know a lot about. One of the prevalent theories right now might actually be the answer or it may be something entirely different. So when you’re explaining this to your family and friends it can be difficult to get them to see it as a legitimate illness. You also have to find ways to simplify this so that your kids can understand what is going on. Some people who are uninformed may even question “Is fibromyalgia real?”

In the fibromyalgia community oftentimes this is called the Princess and the Pea syndrome. This is a story that is unrelated to fibromyalgia by Hans Christian Andersen. It’s about a prince who is looking for a princess. One night a traveler comes to the castle and claims to be a princess and she needs shelter for the night. The queen decided to test her. They wanted her to prove who she really was. She went to sleep on a pile of 20 mattresses one on top of each other. There were twenty feather beds on top of this.

This analogy makes me laugh because I used to have a mattress, a board underneath it for support, a memory foam pad on top of that, and then a down pad on top of that. It really did feel like 20 mattresses. I still did have a lot of pain from it not being exactly right. I ended up having to buy a better mattress. It was the best money I’ve ever spent because it has affected every single day since then. I was noticing with the different layers that even if one of them was rippled a little bit I would have a lot of neck pain during the day. I also invested in a quality pillow. I use a latex pillow. I’ve tried down alternative and memory foam combinations. For me the memory foam is just too dense and heavy for my muscles. Your experience may be entirely different.

Back to the story. The princess goes to sleep and she wakes up in the morning and even with her 20 mattresses she complains of feeling bruised and having had a restless nights’ sleep. The test was a small pea underneath the bottom mattress that she could feel. They thought that only a real princess would be delicate and sensitive enough to make this distinction. The Lyrica commercials often equate fibromyalgia pain to bruising as well. In this story, since she’s a princess she gets to marry the prince and she lives happily ever after.

While sensitivity isn’t one of the main symptoms or ways to diagnose this disease it definitely is a factor. A burning sensation on skin that’s akin to a sunburn can make things like sitting in a chair difficult. This can also be the source for some of the sleep problems. There have been studies whether a simple nap during the day will help. The thing about this syndrome is most of the time when you wake up you don’t feel rested. So even if you are getting eight hours of sleep like the princess and the pea you will still wake up feeling battered and tired. Sleep studies have shown that most fibromites aren’t getting that much sleep. If you need a way to relate an illness that is difficult to explain then just try the Princess and the Pea story.

I think that most people asking if fibromyalgia is real don’t actually have the disease. It is a difficult concept for most loved ones and family members to understand. A visit with your doctor will help you better understand where this whole myth that the syndrome isn’t real came from.

The Myth that Fibromyalgia is a Myth

A few doctors several decades ago would treat fibromyalgia as a psychosomatic disorder. They would even tell patients that this was all in their heads. This theory is now widely disregarded. If you are a patient and your doctor is telling you this then you probably should find a different doctor. One reason why doctors thought that this might be “all in the head” was that it wasn’t showing up on tests. This still hasn’t changed much except for a tender points physical exam.

It also may appear that this is just depression or related to that which was another theory before more accurate research came about. Depression and anxiety are often a common occurrence with this disease but it isn’t manufacturing the pain at all.

So then why is therapy often recommended for fibromyalgia patients? It has nothing to do with the cause. It’s more to treat secondary illnesses and also help the patient adjust to a new way of life.

One of the more ignorant and blunt theories I’ve heard in all my time of being sick was that I just wasn’t good at dealing with things. Fibromyalgia does often onset after a serious trauma like an accident. However, this is based in a change in the neurotransmitters not in someone being overly sensitive.

Now the research is suggesting that this has something to do with the neurons in the brain. It isn’t a matter of the disease not existing. It’s a matter of the fact that the research hasn’t caught up with it.

The first patient was diagnosed with fibromyalgia in the 1900s. There is some dispute about just how many people have this; but it’s definitely in the millions in the United States. Some research shows that 5% of women and 1.5% of men have it while other research suggests that 3-5 million people in the U.S have it.

Depending on the severity this can also qualify as a disability. It is generally thought that this doesn’t show up on tests. While this is true there has been recent research with brain imaging that shows actual pain but these have yet to be widely used.

How to Deal With It?

It’s hard enough to be sick without having to deal with people who question if the disease even exists. I can’t think of another disease that is so openly questioned. Even in the past few years I’ve found that the general public is recognizing more that it’s actually a valid disease.

Occasionally you may still come across someone who thinks that it isn’t real. It’s even called an invisible disease. There are many diseases that don’t have the outward manifestation of making people look sick. This doesn’t mean that the disease doesn’t exist or that an untrained eye qualifies as a proper medical exam