I was twenty-one when it began. A new bride, still in college. The pain was excruciating. Invisible nails biting into my flesh attacked hands, ankles, nd hips. There was a deep throbbing pain, which followed.
Later, three visits to Boston’s best orthopedic hospitals, milograms, and x-rays produced nothing by way of diagnosis. They put me into a plaster jacket from my breasts to my hips. It was heavy and cumbersome. I am not sure that my young husband, only twenty-four, was happy with my incapacitation. But he cared for me and gave me the support I needed to fight this mysterious affliction.
Eventually, there was some relief. They said I had creaking crepiti, accompanied by housewife’s syndrome. They sent me home with tranquilizers and painkillers. For the next ten years, with two young children to care for I took prescription drugs for “my problem.”
Those were the days of “script” doctors. We bought pills in large quantities because it was less expensive. Perhaps as many as 500 at a time. Can you possibly imagine that? Today, the drug store would be raided; no doubt the doctor and druggist would be in jail. Me? I would have been labeled a junkie. Maybe my kids would have been taken away. But funny thing is, that I functioned in what I thought was a perfectly normal state. One day, I decided to dump the pills and see what life was like without them. Fortunately for me, I could do it.
One thing though, you couldn’t touch my lower back. It had three points of excruciating pain. Even the softest touch would produce it. The doctors said it was a birth defect. They said I had a minute opening at the base of my spine. But then there was the pain in my arms when someone held on too tight or the pain in my legs if I bumped up against something.
There were the years of pain, which felt like someone had punched me in the chest. The area was so sensitive that I could not tolerate wearing a bra or any tight fighting garment above the waist. Other complaints included low tolerance to cold, unexplained exhaustion, headaches and a diagnosis of Reynauds. I could not tolerate being poked or bumped in any manner, no matter how light the touch. Recently, I have been dealing with nerve pain in my jaws and teeth, sharp and stabbing pain in my ears. And again began having sudden onsets of pain in arms, hands and legs.
So what is going on with me? It is called Fibromyalgia. It is a syndrome and will not kill you. What it is and does is make your life miserable.
While I am relieved to finally have a diagnosis for years of mysterious discomfort, I am somewhat concerned that “it” is a catch all syndrome and I might tend to ignore a truly life-threatening disease now that I can give my “trouble” a name.
Because I have a syndrome with so many manifestations, it is important that I do not dump all of my pain into the fibro bag without considering other causes. Many of the pains and disorders associated with Fibromyalgia are similar to or mimic dangerous conditions. The chest pains are the most troublesome. On one occasion the pain was so severe I went to the ER in the middle of the night. It was better to rule out a heart attack than to ignore a possible coronary.
The most compelling reason for my writing this essay is that for so many years I lived with an undiagnosed syndrome that did not present itself as treatable, let alone recognizable. Had it not been for a very thoughtful doctor who has taken the time to listen to me “kvetch” about my aches and pains, I would still feel like a hypochondriac chasing a diagnosis.
There are specific tests for Fibromyalgia, which can rule it in or out. Anything you read on line is a helpful guide, but it is the doctor who has to make the diagnosis. I am fortunate to have a rather mild case. In other words, I have pain but it is bearable and I do not need medication. I have accepted it and manage it. Some cannot.
My diagnostic situation is not unusual. When I first went to the hospital with my complaints it was forty-five years ago. It was at a time when women were not taken as seriously as they should have been. We have come a long way and so has the medical profession.
However, just recently I was reading a forum on More.com and “heard” a younger woman complaining that she was going through a similar “it’s in your head” diagnosis about peri-menopausal symptoms.
Be your own advocate. Stand up for yourself and don’t be told that your opinion doesn’t matter. You know your own body better than anyone else. You know what is a normal temperature for you. You know what foods disagree with you. You know when a different mole shows up or your weight changes suddenly. Keep a diary of issues when they first appear so that you can be specific. I often draw a picture of a stick figure and make little red x marks on the places I want to bring to my doctor’s attention.
There are many websites about Fibromyalgia and support groups to help. Thousands of people, particularly women, suffer with this strange malady. If you know anyone who has this problem be sympathetic. If you think you might have it, bring it to the attention of your doctor for a proper diagnosis.