Friday, May 13, 2016

My story for Fibromyalgia Awareness Day

     So I don't really wear purple. It's more my daughter's color. But in 2011, I learned that purple was going to be my color. I was diagnosed with fibromyalgia and at the time I knew NOTHING about this disease. I had been dealing with osteoarthritis since I was 16, so when my joints started hurting worse than usual, I chalked it up to a progression there. I made an appointment with a rheumatologist and when I went to see her, she did a physical exam and diagnosed me with FMS. I was stunned. The only thing I knew was that it hurt and there was no cure.
So she put me on a medication called Naltrexone. Now, Naltrexone is used in the treatment of drug and alcohol abuse. To put it simply, it's an opioid blocker. At this particular time, I had been taking Vicodin for my pain. She knew this, and yet still put me on this medication. Within a half hour of taking it, I started to feel awful...and I ended up in the emergency room. Turns out, the naltrexone that was supposed to help me, put me into almost immediate withdrawal. Of course, I didn't tell anyone this other than my husband. I was too embarrassed. Only drug addicts go through withdrawal, right? Right before I went to the emergency room, I called the doctor that gave me the medication and she told me to go home and sleep it off. That nothing sounded out of the ordinary. I'm glad I didn't because I got very sick. I did not go back to that doctor.
So then the next place I went to put me on Diclofenac. It's an NSAID like Aleve or ibuprofen and can have the same profound effect on your liver. He also ran tests, unlike the first doctor. He ruled out Lyme disease, Rheumatoid Arthritis, Lupus and a few others. See, fibromyalgia has no test. There is no blood work to be done, no X-rays that can be taken. It's an exclusionary diagnoses with certain criteria that need to be met. You must have ongoing, widespread pain and have at least 11 out of 18 possible "tender points". The tender point test is horrifying. They basically press down on the parts of your body that hurt the most to see if they hurt. And they DO...a LOT.
This doctor, while thorough in his testing, did not really believe that Fibromyalgia was as bad as all that. More than likely he was one of the doctors who think it doesn't exist. Well, I can tell you, it does. And so I left that doctor.

At this point, I was desperate because I was in constant pain. And my body would freeze up. The best way I can describe how I'm feeling is you know that one stiff/painful joint you have...well my ENTIRE BEING feels that way. And I was tired. Like, more tired than you have ever felt in your life. Oh, did I mention that fibromyalgia comes with chronic fatigue? I would get hit with bouts of exhaustion that there were times that I almost didn't make it home. I've almost fallen asleep driving with arms so heavy and sore I could barely steer the car. And when I did get home.. I slept like a dead person. I could sleep for 2 whole days at a time...and wake up completely exhausted still. Then there bouts of insomnia where I didn't sleep for days at a time. I felt like I was losing my mind.
Oh...the losing your mind part? That's called Fibro Fog and it is LEGIT. Fibro fog is the cognitive part of the disease. I would forget what I was saying, look at simple objects and forget the word for it, and all of a sudden I was struggling with speaking and remembering things. It was really scary.
And people laughed at me. I would forget what a mug was called while looking right at it, and they laughed at me. When they would playfully smack me, I told them that it really hurt and they laughed at me. "No it doesn't!" they would say.
And to top everything off, I was in danger of losing my job. Because there were days at a time where I couldn't get off of the couch, I quickly depleted my sick time at work and so I would have to go in whether I was up to it or not. I would fall asleep at my desk sometimes.
So I started making phone calls and asking the doctor's offices if they treated fibromyalgia. A lot said no and my frustration level was getting really bad. And to make matters worse, stress only adds to your disease. Finally, I called a doctor in Mechanicsburg. When I called to ask if he treated fibro, they said yes. My next question was the important one. If anyone hesitated before answering I knew I wasn't at the right place. "Do they BELIEVE in fibromyalgia?" She was quiet for a moment, then said "Well, he's one of the leading fibromyalgia researchers in the country." I was quietly optimistic. I had been burned before.
And then for 4 years Dr. McMillen changed my life. It took some med adjustments at first. First, I was on Gabapentin which gave me major rage issues (look it up, it's an awful side effect), then I was on Lyrica which made me SUPER FAT, then I was finally on Zonegran, which I've been on for quite some time. It's an anti-seizure medication, so it helps my pain, but it contributes to my cognitive deficiency. It's super fun to choose between being fat or stupid. I stuck with stupid.
I was also entered into a pain management program. I was put on maintenance oxycontin. 45 mg a day of controlled release medication. Also, I was put on oxycodone IRs for the breakthrough pain. PLUS I was on Celebrex for my arthritis and Ambien so I could sleep. It was around that time that the pain meds pretty much controlled what I did. I never became addicted. Well, not in the sense that you think of addicts. But because my body was physically dependent, if I missed a dose, I started to get dope sick. It was awful.
I started to talk about fibro, because I realized that people really didn't know much about it. And that's when all of the "help" comes in. People want to help. But they don't know how. And instead of listening and doing their own research, they make assumptions:

ALL of these things have been said to me
So then Dr. McMillen retired and I was devastated. This man had done so much for me and I wasn't going to be able to see him anymore. And then I was referred to another practice and I was assured I would be taken care of the same way. I wasn't.
The new doctor came in to my first appointment. He didn't make eye contact, he didn't ask me any questions, he just took one look at my meds list and told me he wasn't going to prescribe the same medication. Specifically, he wouldn't give me my Ambien. He treated me like a junkie and not a person. Shit, he didn't even treat me like a patient. Then, on my way out, he saw me crying and belittled me for my tears in front of the office staff. About a week later, I received a certified letter that I was kicked out of pain management.
So that was it. I was not going to another doctor. I was tired. I was in pain and frankly, I didn't have the emotional well-being to deal with it. In addition to all of the physical symptoms, fibro increases your depression and anxiety. And the stress of it all was contributing to my flares. A flare is when it gets so bad that I have to stop what I'm doing and rest. It rears its ugly head and shuts your entire body down.
There are alternative therapies like massage and acupuncture. But of course, thanks to managed care, they are not covered by insurance and I can't afford them on a regular basis enough to make a difference. And of course there is alternative medicine. Hopefully PA gets its act together sooner rather than later on that front.
I could go into great length and describe every symptom I go through. But it's a LONG list. Here are just a few of the symptoms:
See, fibro has 60+ symptoms and we as fibro patients tend to try and hide a lot of them so we don't seem like complainers. But I'm not complaining, because I'm alive. I can still work...for now. I can still do the theater I love so much and take care of my family. It is definitely progressing, as is my arthritis and my degenerative back disease. But one thing I know for sure is that I won't let it beat me. Because dammit....I AM A FIBRO WARRIOR.

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