Questions and Answers About Fibromyalgia: Symptoms and Treatment
A difficult diagnosis
I first heard of fibromyalgia while watching television. Another in a seemingly endless string of commercials touting the effectiveness of various prescription medications showed an attractive young lady complaining about pain. The promise of the commercial was that with this medication, the woman suffered less pain throughout the day. I thought to myself, “less” pain? That must be a particularly agonizing disease. Several months later a close friend complained of aches and pains that never subsided. She visited with several doctors and researched her symptoms extensively. It was ultimately concluded that she suffered from fibromyalgia.
Fibromyalgia is a medical disorder affecting approximately 2-4% of the population. 90% of those diagnosed are women, but recent studies indicate more men suffer from this affliction than originally believed. It is characterized by chronic widespread pain without an evident source, and a heightened and painful response to pressure. Other symptoms can include fatigue, joint stiffness and sleep disorders. Fibromyalgia is not contagious or fatal. It does not appear to damage the body’s organs, muscles or joints, but it is a chronic disease that can remain for a lifetime.
Not all symptoms are present in every case, making diagnosis tricky. According to Wikipedia, some members of the medical community do not even consider fibromyalgia a disease because of a “lack of abnormalities upon physical examination and the absence of objective diagnostic tests.” This reason is scant comfort to anyone suffering from pain on a daily basis. Regardless of current methods for diagnosis, the pain is real.
Fibromyalgia pain and treatment
Questions and answers about Fibromyalgia
A friend of mine was diagnosed with fibromyalgia over a year ago. It took her doctors months and numerous tests to reach the conclusion that Deborah suffered from “fibro.” Since the onset of her symptoms, managing pain has been a daily concern for her. I asked if she would be willing to answer a series of questions about fibromyalgia and how it has affected her life, and she agreed to offer her insights. The format for this discussion was an impromptu email questionnaire for which she graciously supplied answers.
1. How did you get Fibromyalgia? Is Fibromyalgia hereditary?
There is still research that is being done on fibro to determine whether it is hereditary. There is a connection between arthritis and fibro. Fibromyalgia comes on slowly and is usually “brought on” by an accident, trauma or surgery. In my case it came on after I had a major surgery. It took over a year to get a diagnosis and fibromyalgia is considered only after all other tests have been declared inconclusive.
2. Are there different types of Fibromyalgia? What are your symptoms?
There is only one type that I know of. The symptoms and severity varies from individual to individual. What is consistent is the location of the pain. There are 18 points where the pain is located and to be diagnosed, the patient needs to suffer pain in at least 11 of them. These points include the outside of the knees and elbows; the shoulders and shoulder blades; and, the back and hips. My first symptom was a severe pain in my side and back that went down my leg, which is often a symptom of sciatica. An MRI and x-ray revealed that no nerves were pinched, but I did have two bulging discs and arthritis in my back. This is a separate issue from fibromyalgia but certainly added to my pain. The best way to describe having fibromyalgia is to compare it with having the flu: sore, painful joints and a feeling of aching all over. Fatigue may or may not be present, but being in constant pain can make sleeping difficult and can certainly make one feel fatigued.
3. Was it difficult for your doctor to diagnose your disease? Why or why not? What were the steps taken to diagnose Fibromyalgia?
The diagnosis took a long time and was difficult because so many other illnesses can have the exact same symptoms. That is why so many tests are given; so other serious illnesses can be ruled out. Doctors hesitate to make the diagnosis of fibromyalgia because it has become a catch-all phrase and the jury is still out as to whether fibro is indeed an illness. I had an MRI/x-ray, colonoscopy, pelvic exam, complete blood count (CBC) and physical therapy, and finally epidural shots.
4. Are you always in pain? How do you manage the pain?
I do ache every day. If I press on my joints they are very painful (which is why I don’t do that). Some days are more painful than others; those are the flair ups of fibromyalgia. There are several popular medications that can be prescribed for fibro and what works for one person may not work for another. So far I have been taking amitriptyline and it has helped somewhat. I can function normally and without a lot of pain. NSAIDS help with pain management as well.
5. How does it affect your daily activities?
It can be debilitating for some people, and I have days when the pain limits what I’m able to do. The worst thing to do is to stay in bed, so even though there is pain you have to push through it.
6. What offers you relief from the pain? Are over the counter medications helpful?
Over the counter NSAIDS do indeed help. Doctors are very reluctant to prescribe pain killers because of the potential reliance on these pills. Physical therapy also helps. I use yoga to strengthen my core muscles and water aerobics for exercise.
7. What are some factors that affect your pain, either positively or negatively?
You would think that activity would just make one hurt more but actually the opposite is true. Walking, swimming and yoga in addition to regular activities help prevent pain and spasms that make my muscles sore and tight. Not moving actually hurts worse than staying active. On days when there is a fibro flair up, rest is okay and I will treat it with pain relievers and ice/heat. I try to limit how much time is spent “lying around”.
8. How does your diet affect Fibromyalgia? Can changes in your diet affect it in either a positive or negative way?
Diet can play a huge part in how our body reacts to pain and all illnesses. You are what you eat. I don’t think there’s a particular type of food you should avoid, but you will feel better if you eat right. There are lots of books out there on what to eat for optimum performance.
9. What has been the best treatment for you so far?
Amitriptyline has been most effective for me. I was given anti-inflammatory drugs in the beginning, but this has helped the most. And as I said earlier, staying active is important.
10. What is one thing we should know about someone with Fibromyalgia?
People should be aware that the pain associated with fibro is very real and not imagined. No one can feel another’s pain or know what degree that pain is felt. Everybody is different and what may work for one person may not another.
Deborah, thanks for your time, it is greatly appreciated.
You’re welcome! Glad I could help.
Hope for the future?
As things now stand, managing fibromyalgia pain is essentially the best Deborah can do for herself. Medication and physical therapy are helpful for treating fibromyalgia symptoms, but there is no cure. Advancements have been made in the diagnosis and treatment of this disease, but no definitive answers have been found for the 3-6 million people in the United States alone suffering from this debilitating ailment. Fibromyalgia support groups exist for individuals looking to connect with others as they deal with a lifestyle limited by pain. They provide hope in combating a disease that yields little hope and few answers. These national and online groups offer information, feedback from medical experts and a place for members to share their experiences and insights. Meanwhile, the National Institute of Health has recently recognized the significance of fibromyalgia as a source of musculoskeletal pain and has allocated funding for research. Fibromyalgia is better understood than ever before, and more folks than ever are finding relief from their pain, but their battle isn’t over until there is a cure.
May 12th is Fibromyalgia Awareness Day.
2012 Update
My friend still suffers from fibromyalgia. She has used combinations of medication, exercise and yoga to minimize her pain, but it persists. Her story must certainly be a familiar one to anyone suffering from this ailment; she utilizes the advice and treatments known in the medical community while searching on her own for ways to manage the pain she feels nearly every day. Fibromyalgia seemingly remains the diagnosis doctors prefer not to make, despite evidence that many people suffer from it on a daily basis; folks like my friend. It would be naive to believe my article would persuade the medical community to acknowledge and treat fibromyalgia in a consistent manner, and that was never my intent. I wished only to increase awareness of this condition which robs so many people of their health and vitality.
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