I have rewritten this article 3 times. Call it a Fibro ”fog,” or anxiety due to the fact that I need to make this article strong. I am humbled by people that ask about my opinion on Fibro. It seems as though everyone knows someone with Fibro, or they have it themselves. However, until I talk about my condition, rarely is the disease spoken about. So many are afraid to speak about THEIR Fibromyalgia. Fibromyalgia effects every one in a different way. Some can manage it with diet and exercise. Others are on a regiment of medication. However, most of us Fibromyalgia suffers have some things in common:
Due to the fact that Fibromyalgia comes with so many symptoms, we are often at the doctor. So many of us are called a “hypochondriac”. Many of us are too tired to stand up and have our voice heard. Fibromyalgia is overwhelming. It does not matter what state one is in due to Fibromyalgia, I just hope that you, as a sufferer, or a friend/ family member of a sufferer, can relate to my story. Yes, stop the re-writing. All I can do is tell “MY” story. That is the only one I know. I am coming out with another article filled with part of my story and part facts. It will be out in a couple of weeks. However, because so many asked, here I go…
FIBROMYALGIA (fi-bro-my-al-ju-h) started to creep in to my life when I was pregnant with my son in 2007. My shoulder-blade started to burn. The doctors could not x-ray my shoulder or give me medication (which I understood) because I was pregnant. The labor was rough, and dramatic / traumatic to say the least. I will spare you the details. Thank God my son is okay, and so am I (sort of). However, the labor was a turning point.
The next day (when my son was only hours old), I was in horrible pain. And not just from the labor. I felt like I could not walk. I kept telling the nurses that I thought something was wrong with my legs. Seriously, it felt as though I had been in a car accident. I am not complaining, but Geeesh! Anyway, not knowing at THIS point that I had an on set of Fibromyalgia - The nurses and doctors did not know what to do. In fact, to be real AND honest, they called in a social worker to talk to me. This is when I was first labeled. Not DIAGNOSED, BUT LABELED.
I was not longer “healthy”, “mom”, “wife”‘, “business woman”, “college graduate” and other “positive labels” that I was proud
of. According to the doctors I was : “sick”, a “hypochondriac”, “pain medication / drug seeker” and of all things, “crazy”. I was crying out (literally). Well, the social worker at least deemed me a “normal” new mother. Phew, it was not all in my head. Not “all” of at least, but I was getting stared at by people in the medical field. Even my own family was wondering what was wrong with me.
The next 3 years are some what of a blur. Fibromyalgia not only causes pain and fatigue, but it lowers your immune system, it effects your memory, and more. In fact, people call the memory loss “Fibro fog.” To be honest (again), since I have had the Fibromyalgia symptoms, I have holes in my memory. I have NOT forgotten everything, but at times people will show me photos. I am in them, and I can not recall the event. I am talking about a photo of something from high school (I am only 33 now), and my brain freezes.
Anyway, over those years I was sent to a psychologist, thanks to the “labels”, plus I did have some anxiety. Also (honestly), I was depressed. I was depressed because I felt terrible, I was in pain, and could barely roll out of bed. Besides caring for my two kids, going to doctors became a full-time job. My husband began to take over most of the chores. To this day, I rarely fold laundry, or do anything with repetitive motion because of the pain.
I know, you get it – I did not feel well. I do not mean to complain in this post, but again I am hoping others can relate. Each doctor (specialists, internists, dentists, etc.) diagnosed me with something different. I had a random foot surgery and 2 back teeth pulled due to pain. Neither procedure relieved the acute or all over body pain. However, each doctor was medicating me for different “ailments”. Some I did have. Remember, I told you that your immune system crashes? I was also given pain meds. The pain meds worked, but I did not want to admit that. I did not want to take ANY medication. Not here, nor there, nor anywhere. Sorry, I channeled Dr. Seuss for a minute (wink).
Finally in 2010 my psych doctor referred me to ANOTHER doctor because I was complaining about the medication regimen that I was now on from all the other doctors. Wait! I was NOT “doctor shopping”. I ONLY received my pain medication from one doctor and one pharmacy. Those are the rules and I am fine with that. I just wanted to note that because I am sensitive about the “drug seeker” label. I am sure that “label” is written in my medical chart dating back to 2007, because all these doctors did not understand. Every time I went to a doctor, pain was the topic. You get the point. However yes, one doctor for pain meds, and NO I am not an “addict”. Thank Goodness.
Okay, sorry about that defensive paragraph above. I am just tired of the labels that us Fibro suffers get put on us. I know, I am not alone with that issue. Oh, I forgot all the random nights in the ER thanks to ailments and uncontrollable pain, but we will skip that (you’re welcome). Okay, so I was referred to ANOTHER doctor by my psych doctor. He referred me there because I wanted to sort out all these meds and cut what I did not need. We did work the medication issue out (I still have to take some), but do you know what else happened? He listened!!
He began to examine me. He pushed on what I now know as “pain points” on my body. It was a test for Fibromyalgia . The doctor reviewed all the notes from the other doctors. Clearly, he knew I was in pain. Enough said, right? Next, he also noted the fatigue, how many times my immune system crashed and I was sick, and more. Basically he put this “mess” of a medical puzzle together, and finally DIAGNOSED me with FIBROMYALGIA in 2010, after a long battle of not knowing what was wrong with me.
Sure, after I was diagnosed it was still a journey. I had to rule out MS, lyme disease, etc. After all, any doctor would, and will check everything. I adore my doctor, but I headed off to the Mayo Clinic in 2011 for a second opinion. I was there for a week, and all tests came back to Fibromyalgia. Now, I will note that there is NOT a blood test, or anything with “numbers” on it to conclude that one has Fibromyalgia. However, my current doctor referred me to get a brain scan. The scan is expensive, but worth while. It showed us all the parts of my brain that had changed due to the fact that I have Fibromyalgia. That is what this illness does. Fibro causes your brain to tell your body that you are in pain, even though there is not a specific injury, and nothing in your body is deteriorating.
What is next? Well, there is not a cure. I still have to go to my regular doctor appointments every month for pain management. Fibro is a daily battle, but I push through it. I breathe a little easier with a diagnosis, but my case is severe. I have “Fibro flares” all the time. However, I deal with it. I will not allow Fibromyalgia to define me. That is why I am sharing my story. If I can help someone else, or someone can relate to me, I feel like I have done the right thing.
In fact, I had started to plan 2 charity events on the East coast. The first time Sonja Morgan from The Real Housewives of New York City agreed to host, but it was called off because I fell ill with pneumonia (figures). The second time, Kathy Wakile from The Real Housewives of New Jersey agreed to co-host, but we could not find a Fibromyalgia non-profit in all the East coast to give the money to. Seriously, there are so few Fibromyalgia non-profits out there (I go in to that in a later article). Anyway, that event fell through too, but I very much appreciate the efforts of my friends on the East coast that were willing to help. I also send a big thanks to the celebrities that agreed to host.
Now, we are left with spreading the word. One day I will get a charity event together, but it is not in the cards to date. Therefore, I hope others have related to my story today. Feel free to comment, ask me questions, but definitely SPREAD THE
WORD! Fibromyalgia EXISTS! There is NO CURE! Let’s support each other, form more non- profits, and raise money for the medical community to understand this disease in order to find out how to (eventually) cure fibromyalgia.
I am starting to sound like Miss America. Look, I am not trying to create world peace. No, not today. I am humbled by those that have read this. Uh oh, “Fibro fog (not sure how to close)”…. Hmmmm Hmmm….. Okay, just know that I am real, and I am trying. I am trying every day to get through, and earn my POSITIVE labels back: “Mom”, “wife”, “business woman” and more. That is how we all want to live, right? Fibro as a “cause” chose me, but I choose the outcome. I hope that I have made a small dent in my efforts to spread the word today!! Because Fibro exists, and we can do something about changing what others have to say about it! Lastly, my celebrity “Fibro Says” article is coming soon! Stay Tuned!