May 12th is Fibromyalgia Awareness Day! This year I plan to attend a walk in New York City to raise money and awareness of this disabling disorder. It is called the Caterpillar Walk and will be held this Saturday. My wonderful son will be accompanying me. I think he is most excited to be going into the the city. He has never been even though we have driven by or stopped on the outskirts numerous times. I am also excited (er… nervous) – (1) I have never driven in NYC before, (2) with my brain fog, I am worried I will get hopelessly lost, (3) I will forget where I parked, (4) what if my feet and legs are in too much pain? (5) what if I am too fatigued to drive home? The worries are endless…
Raising awareness for any illness is important. It helps when we are advocating to legislatures about allocating funds for research and treatment options. It helps when we are raising money for advocacy and research. It helps when trying to explain our symptoms to family and friends, and even strangers.
So, for those of you who are not familiar with fibromyalgia, here is the 30-second elevator speech version:
Fibromyalgia is a chronic pain disorder with a variety of symptoms, the main ones being: fatigue, sleep problems (including insomnia, sleep apnea, non-restorative sleep), cognitive dysfunction (also know as brain fog or fibro fog), stiffness, tenderness. Other symptoms that can occur are depression (because who wouldn’t be depressed sitting around all day in pain?), anxiety, migraines, acid reflux, irritable bowel syndrome, irritable bladder, pelvic pain, temporomandibular joint disorder. Doctors do not know what causes this condition but research has shown it effects the central nervous system, immune system, and the sympathetic/autonomic nervous systems.
In a nutshell, it sucks. As a Guns & Roses songs states, “What we have here is a failure to communicate.” It is like our bodies are out of sync and rebelling against us. This has a profound impact on our daily quality of life.
I have a challenge for all of you who do not have fibromyalgia. Place a clothespin on one of your fingers. Can you last ten minutes with it on? How about an hour? A day? That is only one of the symptoms people with fibromyalgia live with on a constant basis – only we never get to take the clothespin off.
Today is Fibromyalgia Awareness Day. Due to my involvement in the National Fibromyalgia and Chronic Pain Association, I was urged to send a request to my governor – the infamous Chris Christie – requesting he sign a proclamation declaring today Fibromyalgia Awareness Day for the entire state of New Jersey. To my delighted surprise, he signed it.
Fibromyalgia is a disabling illness that affects about 2-5% of the population in the U.S. and around the world. It is a central nervous system disorder that causes sensitivity to pain, central sensitization, chronic fatigue, sleep disturbance, stiffness, cognitive dysfunction, bladder and bowel problems, migraines, and more. Fibromyalgia rarely occurs in a vacuum; the vast majority of patients will eventually develop other health issues – e.g., lupus, POTS, arthritis, spinal problems, EDS, connective tissue disorders, RSD, etc. I consider fibromyalgia to be an opportunistic disorder. It will heighten the symptoms from any and all of the other health problems we have. It will make the pain worse; it will make the brain fog more pronounced. That is why it is important for patients to get all of their health issues under control.
No one chooses to have fibromyalgia. It is not something to aspire to. It irrevocably changes your life. You have to cater to its needs constantly by pacing yourself during normal activities. You have to take more frequent breaks in order to avoid a flare up. Things you once took for granted now have to be planned well in advance. You want to go food shopping? Then you have to avoid all strenuous activity for the entire day. You have to plan it around other people’s schedules so they can go with you because you can no longer lift heavy or awkward items. Some days you will need to use a cane just to be able to walk the aisles in the store. Some days you will have to swallow your pride and use one of the electric carts provided by the store. You will have to endure the stares from other customers as they see a relatively young person who does not appear sick using the electric carts that are usually used by the elderly. Some customers might even come up to you and scold you for it. It is not easy looking healthy on the outside while your body is a mess on the inside. If I wore my illness like a dress for all to see, I am convinced people would look away in disgust.
For all those suffering from Fibromyalgia, this is your day. Awareness is key to managing this illness. We need doctors to understand us and we need the public to not shame us.