Fibromyalgia


I have fibromyalgia. I have had fibromyalgia for 28 years. There is no cure and treatments are limited. The medications can have severe side effects. Exercise, for me, makes things worse. Not moving also makes things worse. It is hard for me to go out. I cannot travel for more than two hours in any direction because of the severe pain and fatigue it causes. 

From the Mayo Clinic's website:

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

 Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help. 



When I was a teenager, I had two falls that might have caused changes to the way my central nervous system processes pain signals. One was from the uneven bars while doing a gymnastics unit in PE class that landed me on the mat and forced the air out of my lungs. The other was a fall down the stairs in my home. Neither seemed to lead to any injuries, but I have to wonder if my brain made a connection to those falls by making every pain signal amplified. I don't remember noticing pain at the time, however.

When I was 19 years old and learning to drive a stick shift car, I began having a nagging feeling of discomfort in my right shoulder blade. The car was a 1984 Pontiac Fiero that was extremely difficult to get into third gear. For the record, they don't make these cars anymore. Maybe they found a link between shoving that gear shift as hard as you possibly could to try to make third gear and fibromyalgia. Probably not.

Through my twenties, I went through physical therapy and various diagnoses, including myofascial syndrome and possible rheumatoid arthritis. My symptoms got better during the times that I was pregnant. They got worse after my children were born, progressively with each child. At some point in my early thirties, a doctor said, "You have fibromyalgia." And my whole life changed.

There are numerous theories as to what causes fibromyalgia and related disorders (possibly CFS or ME). A recent study out of Norway points to CFS being an autoimmune disease (Norway Study on CFS), with some good results from the use of (Rituximab), a strong anti-inflammatory. But the study was small and the results need to be replicated. Also, the drug has some pretty serious potential side effects, including death. You have to balance living with fibromyalgia or CFS with the option of being dead. Personally, I will take the fibro.

Having fibromyalgia has impacted every aspect of my life. I have struggled with severe primary insomnia (the inability to fall asleep) since I was 6 years old. This could be related to my bipolar disorder and made worse by fibromyalgia. Pain can make it hard to fall and stay asleep. As my doctor says, I am complicated.

For now, my children know me as the mom who doesn't spend a lot of time anywhere but on the couch or in the recliner. I have to have someone come in and help with the housework. When someone in my family gets sick with a virus and I try to take care of them, it is so exhausting that I can barely lift my head by the end of the day.

Fibro has made me feel like a bad wife, a bad mother, a bad daughter, a bad friend, and a bad person. It has made me virtually unemployable. And it hurts. Physically. All the time.

In 2010, I had a complete hysterectomy for reasons unrelated to the fibromyalgia. I continue to have pain from the surgical site. I believe that the fibro latched onto the new "injury" to my body and flared with unremittant pain and swelling. I now have fibro in my front, as well as my back.

But, as my doctor says, "At least you have a good attitude." I say without a sense of humor, I would just be a puddle on the bathroom floor. Better to joke about it and live with it than to give up and not live at all.

Someday, I hope there is a cure. I would like to visit places like Hawaii, New Zealand, and Australia. Or maybe England or Italy. For now, those are dreams. 

Thanks to the internet, I have made many friends, both in the disabled community and outside of it. I can see places I cannot visit. I can tour museums all over the world. I can see images from the Hubble telescope. I can enjoy other people's pictures of places I cannot visit.

Often, people with fibromyalgia turn to alternative medicine for help. I have found that the hot tub we had installed and deep tissue massage to be the most helpful to me. Others use supplements, a gluten free diet, and acupuncture.

I do get therapy and I am on medication for depression, but I believe my mood disorder to be the root cause of my depression and not my chronic pain. The chronic pain does contribute to my depression though, as do the limitations it puts on my life.

But, I have hope and a sense of humor. Without hope, we aren't really living. And without a sense of humor, life is no fun.