From Ignorance to Understanding

It has been a while since my last blog entry, so I thought it was time to touch base again. I've decided to start this off with the history of my "evolution of understanding" of FM.

When I first heard, in the course of my work, there was a disorder by the name fibromyalgia, I had no clue about what it was or how severe it could be. By the sound of the name, I concluded it probably had something to do with muscle or nerve fibers, and some form of pain. I did not know what the source or cause of the pain could be, or what body parts were affected.

Any time we have doctors providing a new diagnosis that we are not familiar with and cannot get info about through our own resources, we generally tend to send people to doctors our agency pays for, to get a second opinion and get more information about the disease. When that was the case for this disorder, I sent a few patients to doctors for additional information. In some cases, the doctors felt there was no reason the patient could not work, while in others, the doctors felt the patient needed much more time off and should be evaluated for what they believed would be a more definitive diagnosis. I believe they were looking for traditional diagnoses like lupus, osteoarthritis, rheumatoid arthritis, or something similar to these, since so many symptoms of fibromyalgia mimic these conditions.

In one instance, I happened to speak with one of the doctors we use. He described fibromyalgia as, in his opinion, a psychosomatic "designer diagnosis" in which the patient would benefit much more from psychiatric care than treatment with an internist. At the time, not knowing much at all about the disorder, I accepted his evaluation almost as gospel, and began viewing claims with this diagnosis with a more critical eye. I wanted to send these patients to psychiatric evaluations, based on what that doctor told me, but the rules state we can only send them to the type of doctor that would normally treat the defined illness or injury, which was always either an internist or rheumatologist.

Not realizing I was already showing signs of this very illness, I began to believe that these patients were either faking or manifesting symptoms due to some deep-seeded emotional issues they weren't dealing with. It took several years for this opinion to change, through training and resource updates, along with what I learned through personal interviews with affected patients. I eventually came to realize how seriously this condition affects people, and noted (as found in my research once I was diagnosed) that it affects women more often than men.

After realizing that FM was a definite, often debilitating, genuine diagnosis, but before knowing I had it, I met a lady at the church we attended who has it. I was cautioned not to hug her too tight, as she is often in a lot of pain. I later met another woman with it, when I began participating in a monthly game with some ladies in the community. Then a woman transferred to our office who had been diagnosed with it as well, and I started to see the daily struggles of a fibromyalgia sufferer. I really felt for her, because I could see her struggling to continue to work a regular schedule, but often being struck down either by the associated depression or just debilitating pain that would not allow her to continue to work during the course of a day. She became one of my primary resources when I began to research after my initial diagnosis, and shared with me that yet another woman I already knew, who worked as a manager in another office, also has FM. I have been amazed at the number of people I am acquainted with or know, who have this condition besides myself.


Me and my coworker/co-sufferer.

In speaking with my coworker, I came to find that her path to understanding the disorder was not much different than my own. In fact, we joked about "payback," finding humor in the somberness of our condition. She shared with me some of the odd symptoms she had had early on, and how, like me, she didn't think her symptoms lined up well enough for it to be FM, but later found they were just early signs of the disease, which now is quite evident to her. We have in common that we denied having this condition initially, and later had to face facts about it being a part of our lives. She has even shared with me a bit of the history of her going through the rule-out phase, which was a bit different than mine because she gets her care through a medical group, while my care is through a private practice doctor. Each has a different method of doing what results in the same thing; evaluation, diagnosis, treatment.

I have also spoken with the lady in the group I participate with for a monthly get-together, in which we play a game (Bunco, sort of like Yahtzee but not). She has shared of some others she knows with FM and are in much worse shape than we are, and the stories she shared quite honestly, have made me very nervous. I have tried to speak with my church friend about it, but she seems to be reluctant, most likely because many of us find ourselves becoming unreasonably depressed when the realization comes across us about how much worse things could get or have become. To explain; one of the clients who I have encountered recently, appears to be close to the point of being permanently disabled from working due to the severity of her pain. She has to take narcotics to dull the pain, and is still so miserable it is hard for her to get out of bed. It is a horrifying thought to think that I might end up in just as much pain, if the symptoms progress.

Finally, I am realizing how widespread FM is, because even since becoming a member of a social networking site, I have encountered several women who have it, at varying degrees. I have been hoping that I would meet more through my blog, but so far no one has come forward to comment about their own condition and share how it has affected them.

Many of my posts to now have been going over things from a historical perspective, to explain how I came to determine my topic for a blog of any kind and why I believe I should write this blog. From this point on, I expect my posts to be about what I experience as a result of having this, including symptoms, nuggets of wisdom through self-education, and interaction with others in the FM community. If you feel you have something to contribute to discussions on this topic, or even simple words of encouragement, by all means please leave a comment below. Feedback is most definitely welcome!

Case History(?)

I decided it would be a good idea to provide a list of the different complaints I have had throughout the years, that are or could be symptoms associated with fibromyalgia.

Over the years, from childhood to now, I have been involved in a few auto collisions (obviously, not always as the driver). In those, there have been several times where my head, neck and back have been injured. Of course as a child and a youth, I had my share of other bumps and thumps and wounds, but what is pertinent to my case history is that there was at least one trauma in my life that caused a serious injury. I mention this because most people with fibromyalgia have had at least one serious physical trauma to their bodies before the syndrome began to manifest.

As a teen, I became plagued with a chronic fatigue and recurrence of illnesses similar to the flu, in one instance having a flu virus that was serious enough to keep me home from school the entire week. Before I reached my 18th birthday, I was being tested for anemia, which was the only explanation my doctor had for my lack of energy and developing stomach problems. I was diagnosed with a nervous stomach, a precursor to an ulcer, and advised to avoid any food or drink that would trigger a flare up. It took some time for me to realize that coffee was a major trigger, because it took several minutes after consumption to have a flare.

When I hit puberty, I wished I hadn't, because it hit back pretty hard. I would have cramps that would double me over in pain early on, and they never seemed to ease up unless I had a heating pad over my abdomen and was loaded up on aspirin, acetaminophen or ibuprofen. When I started working, there were days when it was so painful I would have to call in sick.

In high school, I developed a strange pain in my jaw that would stop me in my tracks whenever it came on me. The best way I have to describe it is that it feels like someone taking the sharpest needle they can find, and pushing it through the bend in my lower jaw, trying to come up from the lower, outside portion into the center of the top of the bend. I was told when my son was young that it was temporal mandibular joint syndrome (TMJ). I recently had a major flare of attacks that went on for weeks, having several every day that would last for a few minutes at each onset. It also seems to come on me more when I have incidents of jaw popping (the joint popping in and out of place), especially if my muscles are tense and I need to open the jaw a bit wider than the muscles want to let it.

I also had trouble from my youth on, with chronic migraines that seemed to just get worse as I got older. Stress aggravated the frequency and intensity, to the point where I would be praying for mercy if I had got to the point of losing my composure, because if a migraine was setting in, the emotional outburst seemed to multiply the intensity by the largest margin. At one point in my life, I was losing at least three days from work per month, due to the horrific pain.

In addition to losing time from work for the migraines and occasionally due to my cycle, I began having muscle spasms in my back. They started shortly after a fender bender in which I was rear ended. Sometimes my muscles would contract in my sleep, and the intense pain would wake me up writhing. Nothing would help alleviate the pain, no matter how many pain pills I took (even when I got a prescription from the doctor), and no position would grant any kind of relief, until the spasm subsided on its own. My husband wanted me to go to a chiropractor, but I was reluctant to because at the time, chiropractors were not considered the best in the medical field to seek care from. When my insurance decided they were good enough to allow coverage under, I decided it was at least worth a try and ended up consulting with one who happened to attend our church.

The chiropractic care has helped tremendously over the years, and soon after beginning treatment with my first chiropractor, I stopped having the late night spasms. Even so, I continued to have the other problems mentioned above, and have continued to develop even more problems since; numbness and tingling that run down my left arm all the way to my pinkie and ring finger after going through my elbow, more rarely down my right arm, plantar fasciitis (inflammation of the plantar tendon in the foot), "ghost" bruising (you feel like you have a bruise somewhere, or all over, yet there is no discoloration and you don't remember any kind of impact that would cause it), sharp pains and sometimes tingling pain on the outside edges of the feet, knee pain, and ankle pain. My most recent development which, in fact, just started happening yesterday, is a pain in the upper portion of the ear, which feels sort of like the ghost bruising but not quite the same; it's almost like the inside of the curl of the ear at the top was scraped. The plantar problem is about the only thing that has a real explanation for it, so is most likely not part of this syndrome, but I list it in case other sufferers have ever had this problem as well.

If any of this sounds like you, I would recommend you speak with your own doctor about doing the latest evaluation to determine if you may have this syndrome. If this sounds like anyone you know (particularly the pain symptoms), recommend they see a doctor for evaluation. In its own way, knowing what you have, even if nothing can be done for it, is a relief.