Princess and the Pea Syndrome
I have what I like to call Princess and the Pea Syndrome.
Do you remember the story? It was a Hans Christian Andersen fairy tale in which a prince was in search of a princess to make his bride but was having a hard time finding a true princess. In the end a true princess was found by placing a single pea under 20 mattresses topped by 20 feather beds. After the princess slept on the mattresses she claimed that she had not slept a wink and was black and blue because of something in the bed.
I must be a princess. I cannot recall the last time I truly had what you might call a good night’s sleep. Tossing and turning, pains all over my body and being awake isn’t much better. Some days the lightest of touches feels like being poked on a fresh bruise. A well meaning hug can bring forth additional aches and more pain.
You see, I have fibromyalgia. Nobody is sure what causes it and there is no cure. I have lived with it for about 15 years now and have tried everything under the sun for relief. Personally I am of the opinion that undergoing chemo for breast cancer triggered it, but science has yet to determine definitively if that is true.
According to the Mayo Clinic 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. Since chemotherapy ravages the body seeking out those nasty little cancer cells and causes you to feel like your whole body is revolting, I blamed my exhaustion and body pains on that at first.
Quite frankly during the first year of dealing with my breast cancer I was not fortunate enough to be able to stop working. There was no time to stop and wonder what was normal and what wasn’t. My health insurance was through my employer and I would not have been able to afford the surgeries and treatments so I worked and blamed the pain and exhaustion on the chemo, then the radiation treatments. Working the graveyard shift at the Las Vegas Hilton, I went to doctor appointments, chemo then a few months later daily radiation treatments during the day and grabbed sleep here and there when I could. I was the Little Engine That Could, chugging away, going and going and going…….okay so I was a combination of the Little Engine and the Energizer Bunny at work and would totally collapse by the time I got home.
Fibromyalgia is one of the so called invisible diseases. You look just like everyone else on the outside but you have pain everywhere. 3 to 6 MILLION people in the US have this, no doubt you all know someone who is suffering from it……oh yeah…ME!
It actually took years before the doctors told me that I had fibromyalgia. Way back in 1990 I had a stabbing pain in my chest that had me terrified that I was having a heart attack. My boyfriend called the paramedics who determined that I did not appear to be having heart irregularities but the excruciating pain had my blood pressure at a terrifying 210 over 120. After months of periodic attacks and horrible pains in the left side of my chest they told me I had something called Costochondritis, a chronic inflammation of my chest wall. Again there is no cure.
Because of the costochondritis, which would come and go like an unwanted visiting relative, I was always looking for ways to rid myself of this pesky condition. It seemed to me that the chemo treatments, which were given to me through a port they installed in my chest, had aggravated and caused an increase in the chest pains.
Constochondritis is a total pain in my ass. Every time I get a new doctor or have a bad attack they have to rule out heart issues. I have had more EKG’s than I can count. Being a princess I also have very sensitive skin. Every EKG leaves me looking like I was attacked by a giant wild octopus with giant circles of reddened skin where each of the electrodes was attached to me. Yeah, I am a princess.
Since seeing a bunch of different doctors didn’t seem to be helping I started investigating chronic pain conditions on my own. About 4 years or so after my initial breast cancer diagnosis and following years of exhaustion and pain I came across an article about fibromyalgia that I took to my doctor. Since she had been treating me for the chronic chest pains and knew my history she performed another tortuous test to confirm that I did indeed have fibromyalgia. Finally I had some answers explaining the crippling exhaustion and constant pain. Answers but no cure.
On my good days I rush around trying to make up for the bad days by doing everything I couldn’t do before. I am like a crazy woman doing dishes, vacuuming, scrubbing toilets, whatever on one day and bed ridden the next. A simple shopping trip to the grocery store can sometimes put me in bed or stuck in my recliner for a few days. Ahhh, to really be a princess and have servants doing all that stuff for me. I’ve had to give up working, I could no longer tolerate the pain and be functional in a work environment. My current therapist suggested that I start a journal but that is soooo boring that I decided instead to reach out, through blogging, to others with fibro or people that know someone that has it.
So this is me, reaching out……..you are not alone and no you are not crazy. The pain is real and although currently there is no cure, there are legions of doctors, hospitals and clinics out there trying to find some answers and hopefully some day a cure.
Signing off for now, this is Princess Grynnie