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About a year went by without too much to worry about when I suddenly began gaining weight. I was 5' nothing and 90 lbs. soakin' wet. I had been that way my whole life. I was always running around like a chicken with it's head cut off, so no one ever questioned if I was Anorexic or not. They knew better. My Mom had six kids and she wasn't much bigger, so it was easy to see which side of the family I came from! LOL When I started gaining weight without having changed my eating habits, or any other habit for that matter, I started to worry. So did my husband. My next doctor visit was with my Gynecologist (I still didn't have a regular doctor) and I guess I got 'lucky' yet one more time. There was a visiting doctor there (although I didn't know that) and he was scheduled to see me. I told him everything that had happened to me eight years ago and what was happening now and he was intrigued, to say the least. Then he told me that he was just a visitor there and asked if I would come see him at his office. I knew I had to say yes or I would never go anywhere, so I told him I would. He didn't even give me a chance to change my mind. He called his office and made an appointment for me and when he returned to the exam room he handed me an appointment card and said, "See 'ya over there." and left me alone in the room to ponder what had just happened. When I got home, I think my husband was just as relieved as I was not to have to think about 'it' anymore. It was a done deal. Like I said before, this was the beginning of the end. Life as I knew it was over -- I just didn't know it yet. I thought the party was just getting started, but what I didn't know was that it had begun long before this. Remember the eyes? Remember the car accident? The trauma the car accident caused was the true beginning of the end. It wasn't until a couple of years or so went by before we all figured that out! You'd think I had learned something from my first go around with the doctors that didn't believe I was sick, but this time, I had visible symptoms that could not be explained. After a battery of tests, all they could find was that I had a thyroid problem and that's what was causing the weight gain. Unfortunately, I had nearly doubled in body weight. I was two pounds shy of doubling my weight at 178 lbs. My little bones did NOT like all this new weight and the pain I was experiencing was almost unbearable! Since I was running my own business, I thought the timing couldn't have been better to start our family. My Mom lived above the business and my office was below it and my husband was going to be the best 'Mr. Mom' there ever was, but then I got sick and we both thought we'd wait until the doctors figured out what was wrong with me THIS time, only 'this time', it wasn't going to get any better. It was probably going to get a lot worse. The only thing I was sure of was that I couldn't even work anymore. How would I ever be able to raise our children? I no longer had to worry about that. I missed the opportunity all together. All the plans we had made were twisted around now. My husband would have to find a job again after not working for so long because he let me chase MY dreams. What else could we do? Running a business was out of the question and so was having children. Fibromyalgia didn't just take my life away -- it took his, too. It took our life away. Everything we thought we were going to do was gone and we weren't even left with a different life in it's place. We were left with no life at all. It really wasn't going to get any better from here on out and the sooner we accepted that the better, so we hunkered down for our first winter with our new roommate, Fibromyalgia. Next, I'll tell you what life's been like with Fibromyalgia in our lives. Visit 'The FMS/ACM Controversy' Homepage Fibromyalgia -- The Invisible Illness
Copyright 2008 ~ Bernwoodshanover ~ All Rights Reserved
Tags: Fibromyalgia FMS Arnoldchiarimalformation Chiari ACM Hypothyroidism Pain
So, here I am. Labor Day, 1986. All the doctors had to say as they released me was "Have a nice life!" and I was gone after an eight-day stay. I'm fresh out of the hospital and on my way back home over a 100 miles away. No hospital where I lived could do the kind of surgery I needed, but it's done now. It's over. I have a new, expensive haircut -- a VERY expensive haircut! LOL That's brain surgery for 'ya. LOL LOL I thought it was odd that I didn't need a post-op visit, either locally or at the hospital, but who am I? I didn't even need to refill the prescription the hospital gave me. I couldn't fill it in the first place. I found out after the fact that my state couldn't fill their prescriptions -- you'd think the hospital would have known that. Thank God I didn't need it, but that's not the point! Keep that in mind if you ever have to travel for medical reasons. So now I'm home and after some of my hair grows back, I begin preparations for yet another life altering event. I'm getting married! My fiancé and I had been inseparable since December '78 and that was good enough for me, but I guess brain surgery had an affect on somebody else, too. My fiancé wanted to make us legal. We decided to tie the knot on December 31, 1986. Suffice it to say, 1986 was quite the year for me! It felt like all the bad stuff was behind me now. We were married and we moved into a new home. I had short hair for the very first time in my life, but hubby didn't seem to mind and neither did our new puppy. Everything about my life seemed fresh and new and I was as happy as I had ever been. I took what the doctors said to me to heart and I was having a nice life! Nearly seven and a half years went by without a hitch until one cold morning in February, 1994. I was involved in a car accident. No, I wasn't driving! Nothing too serious, but the ER doctors kept me on a blessed back board all day until they were done with all the X-rays known to man and they were satisfied that nothing on the inside needed their attention. I broke the pinky on my right hand, sprained my left ankle and discovered that street salt does not a facial scrub make! LOL LOL Yeah, it had snowed the night before and no one could decide if it was a good thing it had snowed (and I got 'salted') or if no snow on the street would have caused less damage. I think the final tally marked the snow and salt the clear winner. In any event, I scraped up my face pretty good, but nothing that needed repairs. I just needed to heal up a bit and I could continue on where I left off. Boy were they wrong about that. Months went by and I was having a hard time reading. I had my eyes checked only to discover that my perfect 20/20 vision wasn't so 'perfect' anymore. What I didn't know at the time was that this was the beginning of the end. To this day, I can't get a doctor to document my failing eyesight under the Fibromyalgia 'umbrella', but just like any other muscle in your body, your eyes work with muscles, too, but I'm getting ahead of myself again. Just remember the problems with my eyes when I bring this up later on. The point here is that they blamed everything on the fact that I was 'getting old'. At 37, I didn't think so, but my Mom and Dad both wore glasses, so who was I to argue? I bought my first pair of glasses and resigned myself to the fact that I was on my way to becoming 'over the hill'. It was a hard pill to swallow, but at least I had my health, right? WRONG! Visit 'The FMS/ACM Controversy' Homepage Fibromyalgia -- The Invisible Illness
Copyright 2008 ~ Bernwoodshanover ~ All Rights Reserved
Tags: Fibromyalgia FMS Arnoldchiarimalformation Chiari ACM Hypothyroidism Pain
I don't know what pocessed me to go back to school in my late 20's, but as it turns out, it just may have saved my life. I had earned an Associate Degree and was three years in towards my Bachelors when it seemed that my summer vacation wasn't going to be filled with picnics and trips to the beach. I was headed for doctors and hospitals instead, thanks to something I found out at school. When I wasn't getting any satisfaction from the Emergency Room, I spoke to my boss at school about it and he suggested I visit the Sports Medicine Department. I thought it odd at first, but the more I thought about it, the more I thought it couldn't hurt either. So I went over there hoping for a bunch of Seniors who knew what they were doing. When I got there, I ended up with a couple of Freshmen. I guess the Seniors were too busy, what with graduation and all, so I swallowed my pride and began telling my tale to a couple of snot-nosed kids, who were ten years my junior. I complained about these shooting pains I was having up my right arm and how my elbow hurt like it shouldn't hurt. I told them about my visit to the ER and how even my own family and friends thought I was going looney and the first thing they tried was all they needed to do for me. A simple 'pin & cotton ball test' told the students that there indeed was something wrong and they suggested I see their doctor at one of the local hospitals for an EMG, or an electromyogram, which can detect abnormal muscle electrical activity. The original conclusion was that I probably had a pinched nerve. Could it really be that simple and, if so, why didn't the ER think of it? I went to the hospital for the EMG and the tests proved that my right arm wasn't receiving the proper signals and I was told that the next step was to do a myelogram and look for a pinched nerve. A myelogram is another way of saying 'spinal tap'. Yikes! I didn't really know what a myelogram was at the time, but I didn't much care. I was simply happy to know that there WAS something wrong -- now everyone would stop picking on me about 'making something up'! I'm glad I didn't think much about the test anyway because I think I would have scared myself right out of having the precedure! LOL The day of the myelogram comes and my then fiancé drives me back to the hospital. The procedure was over before I knew it, but my headache was just about to begin BIG time. I was sooo sick that I spent the rest of the day in bed and my poor nurse of a fiancé was kept busy holding my head up long enough for me to throw up. The myelogram really made me sick. I had dry heaves, chills, no appetite and I felt an overall 'funk' that I just couldn't seem to shake. I thought I was going to die! The original prognosis was a pinched nerve, but after all was said and done, they didn't discover a pinched nerve. It was much worse than that. I was told to see a Neurosurgeon and I did. He confirmed the diagnosis from the hospital. I had water in my spinal fluid. I had an Arnold Chiari Malformation, or ACM, with Syringomyelia which, simply put, means my brain was descending into the spinal canal. Gross, huh? It's a rare, congenital disorder that usually rears it's ugly head in a person's third decade. At 29 years of age, it was it's time. When the doctors asked me if I was involved in any kind of traumatic event, I told them about the horse that took ME for a ride instead of my taking HIM for one and they said, "Eureka!" To sum it all up, a horse bucked me, nearly throwing me totally off his back and a short time later, my elbow starts to hurt along with shooting pains and all and a few Freshmen later, I'm having brain surgery. Isn't that lovely? More to come...... Visit 'The FMS/ACM Controversy' Homepage Fibromyalgia -- The Invisible Illness
Copyright 2008 ~ Bernwoodshanover ~ All Rights Reserved
Tags: Fibromyalgia FMS Arnoldchiarimalformation Chiari ACM Hypothyroidism Pain
I'd like to tell my story about Arnold Chiari Malformation and Fibromyalgia, how they affected life as I once knew it and what I am doing about it today to change the way people think about 'Invisible Illnesses' in general. Let me start at the beginning. It was a beautiful Spring afternoon in 1986. My husband and I went to visit our friends who lived in the country. We hadn't seen them for a long while and I was looking forward to going horseback riding. I hadn't ridden for as long as I could remember and I was hoping the horse didn't feel my apprehension.
"It's just like riding a bicycle." my friend said. "You never forget!" Yeah, right. The horse clearly didn't want to go for ride that day and I should have felt that, but I chocked it up to nerves and tried to ride anyway. We had driven a long way and I didn't know when we'd be back again, so off I went! I ended up getting bucked pretty hard and was lucky enough to not get thrown off. I didn't know it yet, but that's when it all started and it wasn't going to be good.
At the age of 29, I was an adult college student working for the director of the art gallery and he and I were hanging a collection for an upcoming show when I felt something weird that I had never felt before. My elbow hurt and I was getting shooting pains up and through my right arm. The director wouldn't let me lift anything after that and I wondered what I had done to cause these odd feelings.
I told my husband, who was my fiancé at the time, what had happened at the gallery and he asked me to explain specifically what I was feeling. I told him that my elbow hurt, plain and simple, but he said, "Nobody's elbow hurts. That's just silly." What was I supposed to say to that? "I can't help it.", I said. "It hurts where it hurts."
I can't recall the exact timeline, but I know when it started and I know when it ended and I was one of the lucky ones, but I don't want to get ahead of myself. I couldn't take the shooting pains anymore. Up until this point, I had never been sick before and I was never in a hospital except once in second grade when I was bit by a dog while my family and I were on vacation. Yeah, that was fun -- but that's a whole other story.
Getting back to this story, I didn't have a 'family' doctor anymore, not since I was a kid. I was never sick either, so I didn't know where to go with this so I went to the emergency room. I explained what was happening and he played around checking my reflexes and stuff like that and then he took x-rays and told me to wait there until he could take a look at them. We waited, my fiancé and I just waited and waited. Finally, the nurse came and got us and we waited somemore and then the doc came in and told me he found nothing wrong with me. Nothing on the x-ray, nothing in the physical exam and nothing in what I said or wrote down on the hospital forms. We spent nearly the entire day there only to be told there was 'nothing' wrong with me. Then, all of a sudden, the twinges came on and my elbow hurt again and the shooting pains were back and I told the doctor that I could feel something right now, right then and there. He took another look at me and said he could refer me to the psych department and that's when I finally got the hell out of there!
I couldn't believe that the doctor thought I was 'making it up' or worse yet, that the pain was 'imaginary', that I believed the pain was really there when, in reality, it wasn't! Unfortunately, it was my first lesson in how the medical community treats 'Invisible Illnesses' -- and it wouldn't be my last. To be continued.....
Visit 'The FMS/ACM Controversy' Homepage
Fibromyalgia -- The Invisible Illness
Copyright 2008 ~ Bernwoodshanover ~ All Rights Reserved
Tags: Fibromyalgia FMS Arnoldchiarimalformation Chiari ACM Hypothyroidism Pain
Is There A Connection Between Fibromyalgia & Arnold Chiari Malformation?
Fibromyalgia
(and it's good-for-nothing relatives) They say you can pick your friends, but you can't pick your family. There's always going to be a few relatives that the rest of the clan could just do without. Unlike your family, however, if a friend turns out to be 'not so friendly' you can always find a new one. Family, on the other hand, well, there's a few that aren't too bad and a few more you don't mind putting up with, a couple with whom you seem to have a lot in common and one or two that aren't around that often so you don't seem to notice them as much. Of course, there's ALWAYS a few bad apples and usually a black sheep or two, but what's really ironic? I'm not talking about a family at all. I'm talking about Fibromyalgia. Personally Speaking.... I have Fibromyalgia (FMS). I am looking for someone who has &/or had a rare congenital disorder called Chiari (ACM). I had it and an operation for it in '86 and was fine until I was involved in a car accident in '94. It was only after the accident that I noticed changes in my overall health. First, my eyes that had been 20/20 were giving me a hard time reading and watching TV. Doctors said 'You're just getting older!' and at 39 years old (in 1996), I believed them. To make a long story short, I was officially diagnosed in '98 with Fibromyalgia 'and a few of it's good-for-nothing relatives' such as Hypothyroidism and Chronic Fatigue Syndrome (CFS). I now attribute the failing eyesight to the Fibromyalgia, although the doctors won't confirm my theory. They also refuse to agree that the FMS of today is linked to the Chiari I had in '86. It is my belief that the accident 'jarred' whatever the doctors worked on during the operation nine years prior. If you have any information about a possible connection between FMS/CFS and Arnold Chiari Malformation please contact me at the following email address: SBernheart@(NO_SPAM)HotPOP.com, but please remove (NO_SPAM) before you send your message. Even the smallest piece of information could very well be the piece I am missing to 'prove my case', if you will, to convince the doctors to repair the damage caused by the accident and allow me to return to a normal life. If you know ANYTHING about these illnesses you also know what a fight it is to get the doctors to understand anything's wrong with you in the first place! I've finally found a doctor willing to work with me -- we just need some answers! About Disability According to SocialSecurityHome.com, "...many individuals with Fibromyalgia file for disability benefits, few cases actually receive benefits. There are multiple reasons that exist for this dilemma. First, there is no listing in the Social Security s Listing of Impairments, a manual which contains the lists of illnesses acceptable for disability, for the condition known as Fibromyalgia. But, unfortunately, this does not change the fact that this illness does hinder many people from being able to work. Secondly, the symptoms and causes of Fibromyalgia are not stable from one person to the next, so little is known for sure about the condition causing skepticism in the eyes of the Social Security Administration. Because of this fact, to win a Fibromyalgia disability benefit case, it is greatly beneficial to have some other medical diagnosis along with the Fibromyalgia impairment in order to add more weight and viability to the case. Also, a Fibromyalgia diagnosis made by an Orthopedist or a Rheumatologist will receive greater attention by the Social Security Administration than a diagnosis that has been made solely by a family doctor." Although the Social Security Administration does not list Fibromyalgia (FMS) in their manual, the American College of Rheumatology legitimized FMS in 1990 based upon a specific set of criteria doctors would use to diagnose it. The medical community could no longer ignore what had previously been labeled "The Invisible Illness". Visit 'The FMS/ACM Controversy' Homepage Fibromyalgia -- The Invisible Illness
Copyright 2008 ~ Bernwoodshanover ~ All Rights Reserved
Tags: Fibromyalgia FMS Arnoldchiarimalformation Chiari ACM Hypothyroidism Pain
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