Over the past year and a half or two years, I’ve been learning more and more about Fibromyalgia. As I mentioned in a previous post, I fully believe that it’s not simply a muscular-skeletal disease, but a full-body one. It’s not simply joint and muscle or nerve pain. And it’s not just “pain.” It’s chronic, daily-or-nearly-daily pain. Some days/weeks/months are better than others, some days/weeks/months are worse than others in flare-ups that are incapacitating. I know I shouldn’t have to put a disclaimer since this is my blog and I never claim ever to be a medical professional (because I’m not) nor an expert on Fibromyalgia or Autism (because I’m not), I’m just someone who lives with Fibromyalgia and has a daughter who is autistic. I’m trying to open up a dialogue, and much of what I’m writing is opinion. As I often do, I express my opinions as statements and will not qualify them every time as, “I believe…” or “I experienced this _____” because that’s a space waster and it’s implicitly implied. As for the clinical and statistical stuff, I’m hoping that Google will be your friend. If I’m not entirely certain of a fact and can’t locate the source at the moment, I’ll try to mention that.
When you see someone with Fibromyalgia you won’t see bodily damage or a physical deformity due to the fibro. Because fibro is a sneaky little bitch. There’s no clear outward sign that someone has Fibromyalgia. Someone enduring a flare-up or coming out of particularly bad one might appear puffy in the face and lymph nodes, but it’s subtle. They might be walking carefully, more slowly than usual, and taking extra care not to strain the back and shoulders. You might notice them rubbing their wrists and thumb joints absently as they smile wearily. You might not understand why they’re always tired, even if they don’t work 70 hour weeks and their children aren’t toddlers any more. They might choose the most comfortable, out of the way chair to sit in and appear to refrain from joining in the excitement of physical social activity as much as they used to, not to the point of being rude, but to the point to make you wonder.
What I’ve come across, if I happen to mention my fibro to someone, is a knowing sort of look as if I’ve chosen the fad disease of the moment and am using it as an excuse somehow. There’s just so much more to it than that. It’s estimated that only 1-to-2% of the population in Britain (I think) and 3-to-6% in the U.S. has Fibromyalgia. I suspect more than that, because not enough doctors specialize in it and most doctors can’t agree as to which “specialty” ought to claim Fibromyalgia. I suggest that rather than fob it off onto Rheumatologists or Neurologists or Internists that include Fibromyalgia in their list of specialties, there be specialists trained to be Fibromyalagists. I think I just made up a word. 🙂
Bodily systems that are also affected are the immune system, the neurological system, the digestive system, myofascial and central nervous systems, the muscular-skeletal system, the endocrine system, the reproductive system, the muscular system, the eyes.
A great majority of the individuals diagnosed with Fibromyalgia are women. I believe the statistic is something like 90% of those diagnosed with fibro are female versus only 10% male. Researchers are unsure as to why, but estrogen versus testosterone might be part of the reason. In addition, women feel pain differently than men do. Ah, I found a link that supports that. I knew I had read it somewhere. The article I’ve linked to also mentions that women have more tender points than men as well (click here).
There are 18 trigger points that a doctor can press on to see if there’s a “reaction” of sorts. It’s like a joint compression being placed on certain areas and those with fibro may feel excessive and jolting pain, bone deep, hitting the nerves like lightning. When my pressure points were tested, I was shaky and I cried and was lightheaded. I couldn’t even speak. I had no idea what the doctor was doing, so when he did it I was just floored (almost literally). I was shaky for days afterward. Every single trigger point felt like it was sending me through the Sun and vibrating my bones while doing it.
In general living symptoms are different for everyone and can run a spectrum of mild leading someone to not even seek out a diagnosis of any kind (that was me for years and years) all the way up to severe. Some people are lucky enough to be diagnosed as young as in their teens or twenties, recognizing early on that something isn’t quite right. Others, like me, find out much later in their 30’s and have to rely on medical history and memory to recognize the patterns. Hindsight is 20/20, you know? And of course there are some who are diagnosed later than I was, and some who are never diagnosed at all even though the pain is debilitating. But that spectrum of symptoms and the stage medical science is in with its research of Fibromyalgia means that it’s much the same way Autism was viewed 15 years ago when people didn’t know what it was and figured it was just a problem with parenting and there was much misinformation about what Autism “looks like.” There’s still a lot of misinformation out there about Autism Spectrum Disorder but there’s full-fledged research going on… and specialists dedicated to Autism.
Wait, I lost my train of thought. What was my point?
Oh yes… the research isn’t advanced enough on Fibromyalgia and while there seems to be a lot of information out there ::waves arm around at cyberspace:: and ::waves arm around at blurbs in medical textbooks:: it’s all spread out. There isn’t one reliable place to go ie. a single group or type of Fibromyalgia specialists. You might find a pocket here and there where someone specializes somewhat in fibro, but it’s rare. They’re difficult to find locally and difficult to make appointments with.
When I describe the symptoms that are associated with Fibromyalgia, you might better understand why I think we need something like a Fibromyalagist. Someone who can work with Neurologists, Internists, Rheumatologists, Psychiatrists, Gastroenterologists, Allergists, Endocrinologists, Pathologists, General Practitioners, Orthopedists, Pain Specialists, Obstetricians, Dermatologists, Ophthalmologists, Fertility Specialists, ad nauseum. You know, working as a team… but also someone who any of these doctors that suspects fibro but isn’t dedicated to it can refer someone to The Specialist That Deals Only With Fibromyalgia. The Fibromyalagist who has nutritionists, physical therapists, occupations therapists, counselors, and fibro-friendly General Practitioners on hand for their clients.
I realize this is a lot all at once, so I’ll be having a Part 2 soon. I promise. I’ll get a bit more detailed on actual symptoms and how Fibromyalgia is cyclic, and the nature of oh-so-lovely triggers. Please feel free to ask questions and add comments of your own to this post. Any contribution is welcome. There’s also a reason I dragged Autism into this, which I’ve mentioned before in a guilt-ridden blog entry nearly a year ago, but I’ll get into that into the Nitty Gritty Fibro series I plan to continue.
- Fibro Frustrations (littlefallofrain.wordpress.com)
- Fibromyalgia: Malfunctions in Two Key Body Systems May Contribute to Disorder (http://www.webmd.com)
- Skin Issues with Fibromyalgia (dailylifewithfibromyalgia.com)
- Fibromyalgia: Information and Treatment by Rich Marsiglia (drbradshook.com)
- Fibromyalgia Symptoms (z00lie.wordpress.com)
- Time to Collaborate with the FibroCollaborative Working Group (fibromodem.wordpress.com)
- Happy FibroMAGIC Awareness Day (fibromodem.wordpress.com)
- Fibromyalgia and Receiving Social Security Disability Benefits (socialsecurityhome.com)