Posted in Fibromyaloga

Too Few Answers and Too Many Questions About Fibromyalgia

Individuals who develop fibromyalgia syndrome (FMS) generally can pinpoint an occurrence or event that triggered the onset of their condition. It can be an injury or stressful period of a person’s life. What type of event triggers FMS is unclear, but there is definitely a variance between individuals and genders. (The same applies to rheumatoid arthritis but I will look at that in a different post.)

When people ask me whether there was a specific time period or event that led to my symptoms, I am lost for words. First of all, I have dealt with many stressful events in my life, but I have never been able to point to an event where my symptoms started. Second, I have always been sick for as long as I remember, even as a child. I was very sensitive to any infection or virus that hit my home. My siblings would not get sick or as sick as I would, but I never pinpointed a source where my symptoms started. I remember that in my teen years I had really bad winters where I would deal with a lot of muscle or joint pain and I have really painful periods where I would have to be in bed for days reeling from the pain. As I got older, my symptoms changed as did the types and level of pain that I had.

I have done a lot of research on fibromyalgia and what I have found is that in recent years, scientists have looked at a process called central sensitization which looks at unusual responses in the nervous system with regard to pain perception. Finding some answer gives me hope because as a sufferer, I know this understanding can lead to better treatments, and perhaps a cure.

No one really knows the cause of FMS but even though it has been studied and analyzed for nearly 150 years, it has been around for hundreds of years. Ninety percent of sufferers are women and what is for certain is that FMS runs in families. In my family, my youngest sister and both have FMS. Moreover, most people are not officially diagnosed until their 30s and 40s, but early symptoms of FMS are apparent in teens.

Symptoms take a toll, but persons generally are tired of the pain itself. From backaches to chronic headaches, the symptoms of FMS are physically exhausting and draining. With triggers such as environmental, emotional and physical, the best that individuals can do, though extremely difficult, is to avoid triggers. My life is all about stress and exhaustion but regardless, I have to keep moving, and there are times where this plays a major role in the flare-ups that I have.

Early symptoms are difficult to diagnose because some of them are common characteristics of other conditions such as irritable bowel, muscle tensions, sleep disturbances, depression, and fatigue. Too many doctors are diagnosing patients on a symptom-by-symptom basis thus allowing the disease to become full-blown FMS which is quite unfortunate because early diagnosis and treatment could slow down the progression of the disease.

As a teenager and in my twenties, I started demonstrating early symptoms of FMS, my doctors ignored a lot of my symptoms and I also found myself not acknowledging them. I had symptoms like morning muscle stiffness, specific points on the body that were painful and tender to touch, frequent diarrhea and/or constipation, excessive fatigue, skin rashes and dry skin, worsening symptoms in response to hold or cold, and frequent colds or flu. Some of the symptoms were embarrassing and I would not acknowledge them. However, in hindsight, I should have and I should have pushed my doctors to acknowledge them as well.

Early recognition plays a major role and being your own advocate is the only way to get there. While there is no cure for FMS, it is not a death sentence. However, it is a multi-treatment approach that involves good mental health, a healthy diet, lifestyle changes, and medication.

As parents, we have tendency to wonder whether our children are actually feeling sick when they tell us they are when the doctors say otherwise. My own mother spent years trying to understand that, and I look at my own children and it scares me to think that I can’t always have the answers. What I learned from my mother is to trust my children when they say that are sick and to find out why. My mother did make the effort to understand but the doctors disagreed leaving my mom to wonder whether it was just a part of growing up.

What I am hopeful about is the research that has been done in the last ten years on how to properly diagnose FMS and how to better treat it. The fact that we know FMS runs in families can perhaps make it easier for parents to recognize the disease earlier in their children, and can lead to early diagnosis that can slow the progression of the disease. The answers are coming and we are fortunate to live in a time period where they are.


5 thoughts on “Too Few Answers and Too Many Questions About Fibromyalgia

  1. Thanks for the information, Lana. My husband was diagnosed with FMS several years ago, along with osteoarthritis. He recently weaned himself off several heavy-duty narcotic pain meds and now takes tramadol, along with gabepentin and a host of other, unrelated meds for other conditions. He's now on SS and disability (at just 53 year old) and, unfortunately, considers himself so disabled that he does little but watch TV and play solitaire on the computer. As you know, I have RA, but I have to admit that I am often baffled by his disease and his attitude. I know first hand how debilitating pain and the disability it causes can be; it makes me feel bad to get irritated with him. I guess a great part of coping with chronic pain is attitude. I wish there was a way to get him to improve his. His quality of life and his general outlook stink, frankly.Sigh. I'm just venting. Thanks for listening.-Wren

  2. Wren,I am not at surprised at your husband’s response to FMS. First, understand that everyone’s response to pain in different. Second, he has a lot of overall pain that is in the muscles, tissues and joints with FMS. FMS affects the central nervous system so it is not usual that his outlook on life is bleak. My younger sister’s FMS has played a more emotional and tired role in her life whereas mine has produced a variety of symptoms. Her response is different than mine. When she has severe pain, she gets really depressed. For me, I just keep moving and focusing on ways to put aside the pain. I also think that everyone’s pain threshold in different. I wish you luck with your husband. Men are also big crybabies. I know, I have one of those at home.

  3. Interesting information here about FMS. I, too, have had symptoms of something going back into childhood, but had not considered FMS, since I already have the RA diagnosis. Looks like I need to re-evaluate and talk to the doctor (who has mentioned FMS a couple times "not as a diagnosis, just something to think about") again.

  4. I….am kind of in shock right now. I generally don't delve into the FB posts, because it "doesn't pertain to me". But I read this one, and…am wondering if I have it. So many things you described could be me…

  5. it does help so much to be informed. one of my close friends has been complaining about pain in joints for nearly seven months now. the doc said its not RA and gave her some supplements and also a med called 'Dulane'. for past one month she has been experiencing strange headache and cough. your post just got me analysing discomfort that she is facing. As I write it, I sincerely hope that her pain and discomforts go away forever and as doc says 'its nothing', it turns out to be true! praying for wellness for all!

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