The Fibromyalgia Merry Go Round

In 1994, I had an accident that changed my life, forever. What happened is irrelevant but the results took me on a long and arduous journey of doctors, tests, and soul searching that led me to write this article.

I sustained a major trauma to my neck, which resulted in three pinched nerves and two herniated cervical discs.  A “C” collar and painkillers got me through the initial accident but nothing could have prepared me for the lifetime of pain and anguish that was to follow, but not immediately.

As I said, initially, the damage was treated and all seemed “fixed” but I was not aware, that trauma such as this can have dormant effects for the victims. Ten years and two pregnancies later, I found myself in increasing, excruciating, and inexplicable pain accompanied with bouts of immobility.

I subsequently developed; bone spurs on both sides and a reversal of curvature on both ends of my spine, spinal canal stenosis and degenerative disc disease along with multiple bulging discs and arthritis from end to end.

What became odd, (skeletal issues aside, because that pain was/is continuous), was that some of the pain began to “move.” On one day, my left leg would just start hurting and it would last from a day to a month or two. Then, as quickly as it started, it would vanish only to reappear in another area of my body, again, staying an undetermined amount of time until simply disappearing.

I went from doctor to doctor and I finally realized that they did not know any more than I did about what was happening to me and at times, I did not believe they cared. This, of course, could be attributed to the doctor’s being afraid of misdiagnosis and the onslaught of lawsuits that such brings. Let us also face the facts, the disease itself it is an enigma.  It plays hide and seek and masks itself as so many other problems, it makes it virtually impossible for a doctor, who wants irrefutable proof, to diagnose.

However, mental issues are the first avenue they all took, which is ironic because the pain and malaise gets so bad, you do start turning inward so that depression is a valid diagnosis but not the cause. When you are looking to a doctor for an answer about the pain you are in and he looks you dead in the eye and says, “You probably do hurt but because of your depression, it is not nearly as bad as you think it is”, well, that is when screaming and crying become part of your normal existence!

I became so distraught but determined that I even began to keep my own medical file so that I could instantly keep any new doctor up to date and they wouldn’t have to wait for tests, etc. to be sent to them. This came in handy several times, as I have had x-rays, cat scans (both with and without fusion), MRI’s, blood work, physical therapy, etc. and not all have been in the same state, let alone the same medical center. 

I began to joke that I had had so much radiation that I should glow.  However, joking aside, I have spent literally thousands of dollars of both my own and insurance companies, on the search for a diagnosis.  This is no laughing matter considering the state of the health care system today. 

I have seen GP’s, Rheumatologists, Endocrinologists, Neurologists, Neurosurgeons, Orthopedic doctors and surgeons, cardiologists, psychiatrists, psychologists, ENT’s, Dentists, Chiropractors and Reiki Masters. This was all over a four-year period and yet at the end, there was still no definitive diagnosis. 

Oh, I had several “revelations” from doctors such as; “You have the bone structure of a 70 year old woman,” “You could be paralyzed just by turning wrong,” “You can no longer work at anything strenuous,” “I’m over 60 and I don’t have near that many problems,” etc. To their benefit however, I did get a more accurate picture of what my spine is like and how I had to alter my lifestyle because of that alone, but none of them explained the “traveling pain.” 

The problem with seeing all these different physicians is that it begins to appear that you are a “seeker”, a person simply looking for the next drug or a diagnosis (mental issue involvement again).  Therefore, my solution to that was to stop taking all my pain meds and to not accept any prescriptions…I just lived with the pain, so to speak.

Finally, at the end of my rope, I headed to the internet and began my own research.  I found that this really is not a good tool for someone with so many symptoms.  If so prone, people could easily convince themselves that they have multiple diseases.  Luckily, I am not prone but I did find a doctor that I thought could help me. She was within the state and when I called, she accepted me as a patient.

I forwarded a copy of my file to her office and a month later, my husband and I traveled to Chicago to meet with her.  After an extensive 30-minute visit and exam, she proclaimed to me, “You are not crazy, you have Fibromyalgia.” 

The definition for Fibromyalgia is:

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.

Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases, there appears to be no triggering event.  (Mayoclinic.com)

My reaction was tearful because back, in the beginning – four years ago, I asked my family doctor if that was a possibility and was told, “That doesn’t even exist, and it is just a term used when no other diagnosis can be made.” So, here I am, being diagnosed with something that I was led to believe was a “dodge.” “Well, now what?” 

This doctor assured me that it was real and that although there is not a cure, there are things you can do to alleviate some of the symptoms.  I left with a feeling of, “I’m not crazy” and “I can make it better.”

However, there are so many aspects of this “syndrome” such as; IBS, Thyroid dysfunctions, memory loss, stumbling, vision problems, chest pain, weight fluctuation, sleep deprivation etc., each bringing their own host of problems with them.  It makes it very difficult to know when you should actually see a doctor or write it off to the Fibromyalgia. 

My personal “demons” are the memory loss and cognitive impairments that fall under the heading of “mental fog.” I suffer from this terribly.  I find myself struggling with names of everyday, common things.  I have put my mail in the refrigerator and the ice cream in the cabinet. 

I also suffer from the sleep deprivation but this I have just learned to accept.  It is nothing for me to still be up roaming the house at 1:00 or 2:00 a.m. and then be back up and moving by 6:00 or 7:00.  I know that sounds like a good solid 4 or 5 hours of sleep but know this; I wake up every 2 hours, like clockwork.  Broken sleep is never, ever a good thing and that is what I function on daily.

However, I have found that the absolute worst thing about this disease for me is that it severely limits my mobility.  Because most activity causes flare ups, I am unable to interact with my young, active children, my husband and clean my house, as I would like.  That same inability/inactivity has caused me to gain a tremendous amount of weight and the pain prohibits me to exercise it away. 

I have other medical conditions that prohibit my taking most of the new prescriptions that are now “tagged” for Fibromyalgia but I am still pretty much convinced that there is no “magic pill” for it anyway.  The more weight I gain and the more my husband, children and household suffer, the more I revert inward and the cycle of depression “flares up” as well. 

Until the entire medical community gets behind the fact that this is a very real, dibilitating disease, and not a syndrome, no real advancements or cures will be found.  In the meantime, suffering and depression are common for so many people and they do not even know why.  It is a vicious and completely unfair cycle that needs to be broken, and soon.

If you suspect that Fibromyalgia is behind your problems, I suggest finding a rheumatologist.  Keep looking and changing doctors until you find one that will listen to you, not just pacify you.  Do not get discouraged (easier said than done, I know) but they are out there – the doctors that care and do their very best to help.  There are also support groups, message boards and newsletters that can help.

Today, my pain is still horrible at times and I have several prescriptions that I have to take daily to control some of the subset illnesses, but at least I know that I am not alone and my diagnosis is real. I had to quit my job and now do a small, less strenuous job that is not enough but it keeps me somewhat active, mentally if nothing else.

The bottom line, trust in yourself and what you know about your own body.  If you believe that what you are feeling is serious enough to seek a diagnosis, then keep going until you get it.  There is something to be said for vindication and that is what my diagnosis felt like to me.  I was “vindicated” when I was told I was not crazy and that my pain was real! Knowing is a major step toward helping yourself, even if there is no “magic pill” to fix it. 

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