Fibromyalgia and CFS Skeptics: I'm Fighting Back

When Lyrica was approved by the FDA for Fibromyalgia last year, skeptics seemed to come out from everywhere to post their opinions about the drug and the illness. After reading many ignorant blog posts and newspaper articles on the subject, I felt I had to write something about it. If my article sounds as though I am infuriated, I am. I have been ill for almost 20 years with Chronic Fatigue Syndrome and Fibromyalgia and in this day and age I should not have to defend myself or the millions of others like me who suffer every day.

Fibromyalgia is a disorder that causes widespread muscle pain, fatigue, cognitive dysfunctions, sleep disorders and many other symptoms. Chronic Fatigue Syndrome is a debilitating disorder that causes profound fatigue, post-exertional malaise, muscle and joint pain, sleep disturbances, IBS, cognitive difficulties, hormone imbalances and much more.

The cause or causes of both of these chronic illnesses are unknown and there are no blood tests to specifically diagnose either of these illnesses. There are, however, blood tests that can prove specific hormone deficiencies, viral infections and immune system weaknesses that are prevalent in patients with both illnesses. Both illnesses are considered a "diagnosis of exclusion" so because a physician can't see the result in a blood test, controversy over whether or not Fibromyalgia and Chronic Fatigue Syndrome are real have followed these illnesses for years.

Organizations such as the CFIDS Association of America and the National Fibromyalgia Association have spent countless hours and money raised on research that has proven time and time again that these illnesses are of a physical nature. Other sites, such as ImmuneSupport.com, have also dedicated many hours to providing research and the latest up-to-date findings on these illnesses. But despite all of this information, many physicians and society still believe the illnesses are "all in our heads".

Everyone is entitled to their own opinions, but the ignorance that is reflected by the non-believers is just too much for me to ignore. If I could invite all of the skeptics to come live with me for one week, I bet the majority of them would walk out of my house with a different viewpoint and a new appreciation for what I, and millions of people like me, go through with these illnesses daily. These skeptics would find that it is physically impossible to fake the symptoms we experience and for some of us to carry that façade on for 20 years or more. They would also see a strength in CFS and Fibromyalgia patients that is not found in a lot of people. It is a strength that comes from learning how to live, function and cope daily with the physical and emotional aspects of chronic illness.

Other diseases that were once considered psychological in nature include depression and multiple sclerosis. For years people who suffered from invisible illnesses were treated for "hysteria" and sent to bed.

Those of us with these illnesses have been accused of being attention seekers, neglected as children, bored, lazy, depressed, underachieving, whiners, complainers, and weak. We have also been told that thanks to this new medication, we are weak because we are taking it and have found a reason to continue on with our façade. Look at all of the other illnesses that require prescription medication and how many of those people do we call weak because they take them?

The pain we suffer from is also assumed by skeptics to be insignificant and we are just too weak and wimpy to tolerate it. The pain of CFS and Fibromyalgia is not a typical ache or muscle sprain. The pain penetrates to the bone and is tearing, burning and excruciating.

We have been told that we refuse to change our sleeping habits and if we would just go to bed and just go to sleep at a decent hour we would be fine. With Fibromyalgia and CFS it doesn't work like that. Due to the hormonal imbalances found in these illnesses, our bodies do not physically allow us to sleep normally. So regardless of what time we go to bed, what breathing techniques we use, what relaxation music we listen to, our bodies do not cooperate. We find that we are unable to sleep at night, but can sleep for a few hours during the morning.

We do not use an imagined illness as a reason to deal with the fact that our lives are not perfect and that our childhoods were not perfect. I don't know anyone who has had a perfect life - even healthy people. Fibromyalgia and CFS are not an escape from the bad things that have happened in life. If skeptics would take the time to actually talk to these patients they would find that many of us are well-adjusted, happy, productive, motivated, strong, mentally energizing, dedicated people.

We have been told that we have above average intelligence and use that to our advantage to manipulate other people into buying our stories. We have been told that because of our alleged above average intelligence, we are very knowledgeable on our illnesses and often know more than the physicians and believe that we are smarter than medical professionals. I guess this could be taken as a back-handed compliment but it is just ridiculous. CFS and Fibromyalgia afflict people of all intelligence levels. The reason many of us with these illnesses are very knowledgeable is because we have had to figure out what works and what doesn't work on our own. Things have changed somewhat for the better over the past 20 years since I first became ill, but it is still left up to us patients to determine many times what helps us and what makes our symptoms worse. We do often know more about what we deal with on a daily basis than physicians. It's easy for a doctor, or anyone for that matter, to say that physical symptoms are not possible or there's no basis for them. But until you have lived it every day there is no way to know what it is truly like.

We are told that the fatigue is something everyone experiences and we just need to push ourselves through it. The fatigue from CFS is not a normal, tired, I worked too hard today tired. The fatigue is a complete physical drain of all energy. The fatigue is such that tackling the smallest task, like making a bed, taking a shower, and getting dressed, are enough to send the person to bed for hours or days. When your body is physically running on empty, you can't push it any further.

To the skeptics out there who don't believe people like me are sick, I hope that you are never afflicted with a chronic illness. Even though I would love for these people to experience for one day what it is like, I would never wish anything like this on anyone. But if you ever do get sick, hopefully you will be shown more compassion and understanding than what you have shown us.