I don’t often write about Fibromyalgia (FMS) because let’s face it, unless you have it, who really wants to read about it? When I was first diagnosed I felt separated from others my age. However, I’ve since learned that just about everyone has their own health issues. Especially now that I’ve aged 6 years! Some of these conditions are far worse than mine and after reading Jane Hawking’s autobiography, I realize Fibromyalgia is tame as far as neurological conditions go.
Considering that 5 million Americans have FMS, I am probably not the only person you know who has it. Nearly 90% of that 5 million are women. You probably already guessed that after watching the Lyrica commercials. I have a love/hate relationship with Lyrica (manufactured by Pfizer). In my case, I didn’t feel any improvement taking it, although studies indicate I should have. I appreciate however, that the drug educates people about FMS. If these commercials were aired when I first was diagnosed (2009) I may have realized what I had years earlier. I thought doctors would think I was a hypochondriac if I said I hurt everywhere, so I always focused on whatever symptom was bothering me the most. For a period of time, I was taking expensive medication for Acid Reflex. I virtually went through my $2000 out-of-pocket requirement within a couple months. When I didn’t improve, the doctor inserted a transmitter temporarily in my esophagus to figure out what was wrong. Perplexed, the doctor told me I didn’t have acid reflex. He hypothesized that instead I had a “hypersensitive esophagus”. It sounded nonsensical. However, when I went to the Cleveland Clinic a year later, the FMS Specialist nodded as I recounted the story. He handed me an article he wrote in a Scientific Journal. It was about hypersensitive esophagus in Fibromyalgia patients. What seemed nonsensical made complete sense after all.
While Lyrica is helping women identify they may have Fibromyalgia (a syndrome that normally takes 5 years to diagnose), it also makes things harder for patients. I say that because when I was working in the corporate world, I’d wince whenever the commercial came on with the woman sitting by a computer. She had a stack of paper work sitting on her desk that she wistfully looks at. She says, “Before Fibromyalgia I was on top of things”. It always concerned me that my abilities would be questioned as a result of this commercial. I’ve long wondered if others in the FMS community share a similar concern.
I also periodically check Google news to see if there is anything new on the research front. It’s been pretty consistent lately. I keep reading that FMS is largely viewed as a chronic pain condition resulting from the brain interpreting pain signals differently than it should. Imagine 2 people listening to TV, clearly it would be TLC in my case. The “normal person” hears it at a level 4 and the FMS patient hears it at a level 12. Ironically, I am often telling the kids to turn down the TV. The sound in itself can be painful although other times, I don’t notice it at all.
Recently, there were a few interesting articles about hyperbaric chambers being helpful in treating FMS pain. Of course, it’s not covered by insurance and the expense is prohibitive for most. But, I am hopeful additional studies will prove its usefulness and this will be a new option for many of us. You can read more here:
While searching for news, I came across an article that made me say “F___ You” to the computer: http://www.prohealth.com/library/showarticle.cfm?libid=21156
In it, you will read about a woman who basically says since she began aggressively exercising her FMS was cured. I’ve read many times that exercise can improve symptoms; however, I have rarely read that it cures FMS outright. I believe that a) the writer was misdiagnosed b) is exaggerating her recovery for personal gain or c) is an anomaly. Let’s face it, fatigue makes exercising more difficult for FMS patients than the general public. No matter how committed you are, FMS is going to make training harder than it otherwise would. And- the implied “it’s the patient’s fault” message, is what led me to my FU moment. Now that I am not working in Corporate America, I am exercising considerably more. I went from zero activity to walking or biking 30-50 minutes 6-7 days per week. I also lift weights, but they are only 5 pounds. I can only do this in the evening, because earlier in the day I can barely walk across my bedroom. I can’t say I feel any better and I know if I was working, I’d never have the energy. I realize I may feel worse if I didn’t exercise, and I know it has led to other health benefits. But, I could do without articles like this one. It oversimplifies the problem and the cure.
If you are still with me, this is the message I want to leave with you. People with FMS look fine. They look healthy, young and vibrant. You never know what is going on in someone’s world, whether it is FMS or some other condition. Have patience and understanding even when it seems like a perfectly healthy person just took the handicap seat on the bus. If someone’s work or personality is different, seek to understand and consider they may be having a physical or emotional challenge you don’t yet know about. You owe it to your friends, colleagues and family.