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Fibromyalgia is a “syndrome,” meaning that it is a group of associated symptoms without a known cause. Fibromyalgia is characterized by chronic, body-wide musculoskeletal pain and tenderness among other symptoms. Acute pain in the extremities may come and go, but many patients report that dull aches and other flu-like symptoms are persistent. Many people with Fibromyalgia also experience chronic fatigue. Because little is known about fibromyalgia, the disease is often misdiagnosed. Fibromyalgia was once thought to be a product of patients’ imagination, though research has proven the physical reality of the disease. It is thought that fibromyalgia affects two to four percent of the population, with women being affected twice as often as men.
The exact cause of fibromyalgia is unknown.
The following conditions are commonly associated with fibromyalgia:
It is possible to develop fibromyalgia with or without the risk factors listed below. However, the more risk factors you have, the greater your likelihood of developing fibromyalgia. If you have a number of risk factors, ask your doctor what you can do to reduce your risk.
There are still many questions regarding the exact cause(s) of fibromyalgia, so risk factors are still being identified.
Currently, risk factors include:
Primary care physicians often refer patients to rheumatologists for definitive fibromyalgia diagnoses. It is a tricky diagnosis because it mimics other diseases that involve widespread pain. There are no blood tests or X-rays that can determine fibromyalgia, though it’s important to have a range of tests to rule out other causes.
Fibromyalgia used to involve “tender points” exams, which test the level of pain/sensitivity at 11 to 18 specified “tender points” on the neck, back, chest, elbows, hips, buttocks, and knees. Since those tender points fluctuate over time, this diagnosis isn’t always accurate. A new diagnostic criterion was established in 2010 involving the measurement of a widespread pain index using a ‘symptom severity scale’. The pain must be on all four quadrants of the body – that is, both sides of the body as well the upper and lower parts of the body – for a diagnosis of fibromyalgia.
Improved testing for this complex disease may be on the horizon. Researchers at Ohio State recently completed a pilot study which uses a finger stick blood sample to detect fibromyalgia syndrome under a high-powered, specialized microscope. A scientist involved with the study said, “we would like this to lead to an objective test for primary care doctors to use, which could produce a diagnosis as much as five years before it usually occurs.”
There are a myriad of symptoms for fibromyalgia. These include:
Fibromyalgia is a chronic, reoccurring disorder. It can be mild or severe. Statistics from medical centers show that sufferers average 10 outpatient visits a year and one hospitalization every three years. Fibromyalgia is not organ or life-threatening, nor is it progressive. The prognosis is best for patients who are diagnosed and have proper treatment, which involves stress reduction, exercise, and techniques to encourage sound sleep and help minimize symptoms.
Karen K. is a 45-year-old postal clerk. She’s suffered from fibromyalgia-related pain for at least 18 years, and was diagnosed 12 years ago. Despite frequent bouts of pain and regular episodes of irritable bowel syndrome (IBS)-a condition common among fibromyalgia patients-Karen considers herself lucky to be able to pursue hobbies like gardening and remodeling projects around her home. The divorced mother of two is currently helping plan her daughter’s wedding.
What was your first sign that something was wrong? What symptoms did you experience?
About 18 years ago, I started having trouble with pain in my hips. A lot of times I couldn’t get out of bed. Walking was painful. Then I began to have pain in the muscles in my shoulders and neck. It’s not like muscle soreness after you work out. It’s a soreness like if you put on layers and layers of clothes-it’s that kind of tightness combined with aches that will last a couple of days. If it gets into my neck, it can last for weeks.
I also started having IBS-basically diarrhea. It was very hard to even go out sometimes because I was afraid of having diarrhea. It would come in waves. I’d rather you cut my arm off than have to go to the grocery store. Tests on my colon would always come back that there was nothing wrong.
What was the diagnosis experience like?
There was one episode when I had to be taken to the hospital by the life squad because of really bad pain in my shoulder and neck. I was at work and had pulled some muscles. After that, I went back to my doctor and he went over a variety of symptoms of fibromyalgia. I had all but two of them.
What was your initial and then longer-term reaction to the diagnosis?
I had never heard anything about fibromyalgia before, so I was thankful that someone knew what it was-that a doctor believed in the pains that I had. Since I didn’t look like I was sick, sometimes people would look at me like they couldn’t believe that I was. My daughter is a nurse-she had been saying that a lot of medical people believe that fibromyalgia is all in somebody’s head.
How do you manage fibromyalgia?
I walk a lot because my doctor told me it’s good for me. I walk five days a week, three miles a day. It feels good to get out. If I don’t walk, I can have trouble.
Around my period I have to be very careful-if I just twist in a way that is slightly different than usual, I’ll pull a muscle. At work, I lift, but I watch that now I won’t pick up really heavy packages. I also know that if I spend a day working in the yard like I used to, I’ll be really sore.
Did you have to make any lifestyle or dietary changes in response to fibromyalgia?
I’ve tried special diets and drink mixes, but they didn’t help me, and I don’t want to start on any long-term medicine unless it would help my IBS. When I know I have to go out for a special occasion, I’ll take an anti-diarrheal medicine and that will help me through it.
I also try to let things that normally would upset me roll off because I know that stress triggers my symptoms.
Did you seek any type of emotional support?
No. I still feel I’m very lucky. My mom had MS and died when I was 15. What I have to go through doesn’t seem like anything compared to what she went through.
Does fibromyalgia have any impact on your family?
It does. I’m constantly aware of it. I used to be a mail carrier. I carried in a small town where there are only two public bathrooms. It got to the point where I would be afraid to go out and walk. I used to love to go out and go do things. My husband couldn’t understand why I didn’t want to go out anymore. Even to walk around the block scared me.
My kids never understood it while they were growing up. I didn’t want to go anywhere there wasn’t a bathroom. If I’m around the house it’s not so bad, but just being out and being afraid something could happen, that triggers a lot of my symptoms, especially the IBS.
What advice would you give to anyone living with fibromyalgia?
This isn’t in your head. This is a legitimate disease. You need to find a doctor that believes that you do have it. Even though the pain can get you down, you can find ways to live with it. Figure out what triggers your symptoms’a lot of times it is stress. Also, exercise can help. It seems one of the best things you can do is keep yourself limber to minimize the discomfort.
The purpose of screening is early diagnosis and treatment. Screening tests are usually administered to people without current symptoms, but who may be at high risk for certain diseases or conditions. There are no specific screening tests or guidelines for fibromyalgia.
Because researchers have such a limited understanding of the cause(s) of fibromyalgia, there are no known ways to reduce your risk of developing this condition.
There is no cure for fibromyalgia. Therefore, treatment focuses on reducing pain and other symptoms. Physicians typically prescribe sleeping pills, pain medications, and anti-depressants to help manage the physical and emotional symptoms of this complex disorder.
Only three medications are FDA- approved for fibromyalgia:
The following alternative treatments may be helpful in treating fibromyalgia symptoms.
Yoga. A 2011 study found that fibromyalgia patients who took a 75-minute yoga class twice weekly for eight weeks experienced some pain relief as well as lower levels of the stress hormone cortisol in their blood.
5-HTP. Another alternative treatment that has been found helpful by three studies is the natural amino acid 5-HTP. It seems to work along the lines of an anti-depressant by raising the levels of serotonin, a neurotransmitter that reduces the perception of pain and elevates mood.
Acupuncture is another helpful remedy. A 2013 analysis involving 395 patients found evidence this ancient Chinese remedy helped reduce pain and stiffness.
The following tips can help make living with fibromyalgia easier:
Contact a doctor if:
You have a unique medical history. Therefore, it is essential to talk with your doctor about your personal risk factors and/or experience with fibromyalgia. By talking openly and regularly with your doctor, you can take an active role in your care.
General Tips for Gathering Information. Here are some tips that will make it easier for you to talk to your doctor:
Specific Questions to Ask Your Doctor About Fibromyalgia
About Lifestyle Changes
For more information on Fibromyalgia, visit:
The National Fibromyalgia Association
National Pain Foundation, Fibromyalgia Patient Care Handbook
The Fibromyalgia Information Foundation
Behavior Change-Up for a Slimmer You
Extreme Exercise and Heart Health
A Narrow Escape
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