To Fibromyalgia Patients - the Stuff They Never Tell You

Fibromyalgia Patients - The Stuff they Never Tell You
A Guide for Patients, their families, and for Doctors
Tammi L. Way-Kornow

So I am sitting in my doctor's office for what seems to be about the thousandth time about ten years ago, and my doctor is handing me yet another exotic diagnosis for my constant fatigue, muscle pain and stiffness, as well as my migraines and stomach pain. All the while he is giving me the "tsk, tsk" look and silently calling me a hypochondriac before handing me yet another set of drugs to try. Then he sends me on my way so that I can go home and lay in bed hoping that my "non-existent" symptoms will suddenly go away and I will be a relatively normal human being again.

Then, a few days later, I had a small meal and again the excruciating pain started in my stomach. I ended up on the floor, curled up in a ball crying. My fiancé came to me and told me that while he loved me, he could no longer live with a woman who couldn't even eat five bites of food without dramatics. Again I called the doctor, I got his annoyed nurse, who explained to me that I would have to see the Physician Assistant because the doctor was "too busy", I was past caring who I saw at this point so back to the doctor's I went.

Luckily, I saw a PA who had no history with me. He walked in the room fresh as a newborn lamb with no preconceived notions about what was wrong with me. If I remember correctly I told him that if he didn't correct the pain in my stomach that I had to deal with, for going on six years that he would be hearing about my funeral arrangements by the end of the week. By the look on his face I could tell that he knew that I was serious. Very gently he asked me about my symptoms, something that my doctor didn't do anymore. Then he told me that he believed that I was suffering a gall stone attack. Now this wasn't exotic, but I hadn't heard this before. He also told me that I there was a non-invasive test in order to determine whether or not I was in the midst of a gall stone attack. It was called a "Murphy's Test", basically he would press on the area and see if he could physically feel the gall bladder, or more importantly any stones.

Well now we're getting somewhere, a test that we can do to definitively tell if something is wrong, and a doctor who is willing to listen and respond to my complaint. So I got on the examination table and let him do the test. Then when he palpated my stomach I grabbed hold of his tie and jerked him forward because it hurt so much. Needless to say, it was a positive test. He then gently removed himself from me and started to order more extensive testing.

About three hours later, I was at my local hospital getting an ultrasound. I asked the technician when she thought that the results would be in. She informed me that it usually took about five days. Then she proceeded to do the test, which was painfully beyond logical reason. She was watching the screen and about five minutes into the test she left and came back with the radiologist who continued the test. Then I was told that instead of the five days that I was expecting to wait that they would be faxing the results to my doctor in about an hour. I asked if that meant if it was bad news. The radiologist told me that he was sorry but he wasn't allowed to tell me, I told him that he just did.

The upshot of the whole thing is that in a few hours, I was in the hospital again, this time to be operated on. I had a gall bladder that was hugely enlarged, was full of stones, and was infected inside and out. When the organ was finally removed along with the stones, the whole thing weighed almost nineteen pounds. I was leeching infected bile all throughout my system and I was told that if it hadn't come out that I was within days of dying of infection.

Now, in the famous words of Bill Cosby, I told you that story to tell you this one. Due to the fact that I now realized that the doctor I was seeing was incompetent I decided to wise up and get a new doctor. So I switched to my fiancés doctor. He of course did a complete work up when I first met him. I apprehensively told him all that was wrong with me, hoping that he wouldn't call me a hypochondriac. I was fervently praying that he would see through all of the symptoms and start me on the road to a real diagnosis.
He took down all of my symptoms, and without judging he listened and typed into his computer, asked pertinent questions and then wrote down my answers and then, amazingly asked some follow-up questions; all this without so much of a rolling of the eyes, or a harrumph underneath the breath. Then he wanted to speak about specific symptoms and with those symptoms what sort of time frames accompanied those symptoms. Now, here is one of the things that fibromyalgia patients are rarely ever told. When you start to notice symptoms, start to track them daily. You are NOT being a hypochondriac you are being a concerted patient. So if a doctor looks at your charts a little funny look at them a little funny. Ask them why they think that tracking symptoms are a bad thing. Trust me it will back them up a few paces. Doctor's while highly trained are not infallible, and sometimes a really good kick in the ego is a good thing. It wakes them up and makes them pay attention.

Getting back to the doctor's office, my doctor said that there were a specific symptoms that went with a disease that he was thinking was the root cause of my problems. Having heard many exotic diseases in the past five years I almost didn't want to hear it, but gamely I said, "what do you think that it is?" He looked at me and said, "I believe that you have Fibromyalgia."

Now let's have a little definition shall we? According to the National Fibromyalgia Association website, the condition is defined as:

Fibromyalgia (FM) is a chronic pain illness characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.

Now we're getting somewhere, we actually have a disease that has symptoms matching mine. Not sort of matching, but really dead on. Now here is something else that doctor's don't like to tell patients. Every single solitary patient with this disease will be affected by these symptoms in a different way. This is simply because all of us are different. Some of us may be affected more by soft tissue tenderness, while others may have such fatigue that they are incapacitated by it. So if you have this disease, don't let your doctor paint you with the same brush that he or she paints everyone else with. While there are parameters for all of these symptoms, you feel the way that you do and no one should make you feel as though you're a hypochondriac because you ache like you've been in a car accident, or because you can't sleep no matter how hard you try. Your body is unique and will act the way that it is programmed to act, not the way that some disease says it is supposed to. It's all part of being human friends and many doctors get frustrated with symptoms that they can't easily define. If yours is one of those, then either educate them vigorously or find another doctor, which is your right as well.

Here is a complete listing of all symptoms that you might be experiencing. Fibromyalgia can be diagnosed if you are experiencing 11 of these symptoms for more than six months.

Pain:
The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.

Fatigue:
In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically.

Sleep Problems:

Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.

Other Symptoms:
Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.

Now here is something that they never tell you, while a diagnosis can come after six months, most Fibromyalgia patients have their symptoms for a minimum of five years before they are finally diagnosed. Many along the way lose jobs, relationships, etc., because of the lack of diagnosis and effective treatment. Patients are also subjected to doctors who aren't or don't want to be informed about this disease who come up with exotic diagnosis rather than this one that is based in fact. This is because of another thing that they never tell you.

Again according to the National Fibromyalgia Association, here are the statistics of the disease:

Who is affected?
It is estimated that approximately 5-7% of the U.S. population has FM. Although a higher percentage of women of all ages and races are affected, it does strike men and children. Because of its debilitating nature, fibromyalgia has a serious impact on patients' families, friends and employers, as well as society at large.

That's right because it is largely thought of as a "woman's" disease, many doctors have a strong tendency to dismiss it as a woman's need for attention, or largely hysterical. If you start to get this feeling, this is when you find a new doctor. Here is why, when any doctor treats you this way, and you continue to do business (and that is what it is) with this person, what you are saying is that it is perfectly ok for them to treat you as if you don't exist. However, if you stand up for your rights, tell the doctor what you believe and then walk away. If enough patients do this perhaps doctors might start to get that patients are people and their income is directly tied to customer satisfaction.

Now, this is for all of you who have a friend, loved one, or colleague who suffers from the disease. Please do not do what my fiancé now husband did. My husband sat at my in-laws dining room table and announced that he had seen a "doctor" on CNN who said that Fibromyalgia was not a real disease but was really all in the mind. Now, it may seem trivial, but when a person is in constant pain and they are fatigued, the last thing that they want to hear is a friend, colleague or loved one tell them that it is all in their head. It is insulting, and it is also in this case not correct. Fibromyalgia is a real disease and it deserves real treatment and the people who suffer from it, deserve respect and empathy.

Finally, let's get back to the doctor, my new doctor, he took note of all of my medications, and then told me that over the next few months that he would be trying medications in combinations in order to relieve the symptoms that I was feeling. He wanted me to keep a symptom and a daily pain journal while he tested these medication regimens as it would better define how to tackle the disease. Now here is what many doctors never tell you. You are in a partnership with your doctor; once you are diagnosed you must be proactive in your care. It is always the patient's responsibility to chart their symptoms and keep their doctor informed as logically as possible. I know that it is at times very emotional, but please dear friends try to keep your head in the game, it is a game you can win. This is also something that they never tell you, the success stories.

At the time that I first saw my new doctor, I was basically bedridden; my world was a bedroom and a view into hell caused by constant pain. Now because, I learned what to do and what not to do, how to train my mind and my body into more action I have re-opened my world. Now five years later, I am a full time college student who is looking forward to law school. I also am a business manager for a professional photographer, as well as a full time Toastmaster, you can win with this disease, but you need the tools. You also have to find what works for you and you have to be willing to try many things. So if your constantly tired and achy, if your body is not cooperating if you anymore it's not just in your head, you don't need a good man or a new hairdo, it may be that you have a real and diagnosable medical condition. So look for a good doctor, be proactive, get the facts, become educated, and then don't take no for an answer. Life is out there for you, and it is the stuff that I am telling you.