Wednesday, February 29, 2012

Fibromyalgia.

Finally, my fibro story.

I’ll make this as short and sweet as possible.

I don’t know exactly when it starte, since the beginning of my pain was very sporadic and isolated, and I didn’t experience a full flare until November 2011. I'm not too sure if all of this is fibro related, but I did have various conditions I was diagnosed which are definitely similar to symptoms of fibro. So here’s a bit of a time line.

Age 12: I am diagnosed with ADD. I would slip up in weird ways, such as doing my homework, but forgetting to turn it in. Medication helps immensely.

Age 13: I begin to experience extreme knee pain during basketball and dance. No one can figure out what’s wrong. I adjust and push through it.

Age 14: I begin experiencing joint pain not only in the left knee, but in both shoulders and right ankle. Again, no one can figure this out. It is assumed to be something genetic, since my father has had surgeries on both of his shoulders, one of his ankles, and has knee problems.

Age 16: I begin having intense jaw pain which often causes headaches. My jaw also begins to pop and lock up frequently. I am diagnosed with TMJ and purchase a $1,000 splint to help, but unfortunately lose it at work two weeks later when taking it out to speak to a customer (the splint gave me a crazy lisp). Due to how expensive it is, we do not purchase another splint, and I figure out how to adjust by quitting certain habits that noticeably aggravated my condition.

Also diagnosed with Meniere’s Disease (I find this worth mentioning here due to MD symptoms overlap with Fibro symptoms).

Age 19: Diagnosed with Ulcerative Colitis. Like MD, I mention this due to a symptom of Fibromyalgia being irritable bowel syndrome.

I also begin experiencing excruciating hip pain. I am an assistant manager at my job and on my feet all day and the pain is interfering with my work.  I can hardly stand up straight after a few hours. Go to the doctor, and no dice as to what it could be.

Then I begin experiencing pain in my hands and wrists, all the while still experiencing pain in the previously mentioned joints. Finally, a Rheumatologist declares it arthritis associated with my UC. Medications do not seem to work.

I am having difficulties sleeping. I will lay in bed, eyes closed and covered with an eye mask, no sound, and will not be able to fall asleep until 1-4 hours after lying down. Once asleep, I wake up frequently.  This is due to reasons unknown and also due to pain in my wrists and hips. Sleep studies are ordered. I am diagnosed with insomnia.

Age 20: Wake up sick with a fever. After a week, the fever breaks, but still feel sick. Become winded just putting on my make up and drying my hair. Same day, standing up in the shower exhausts me and causes me to feel faint and the feeling of water against my skin hurts. Go to UrgentCare.  Doctor says it’s my UC flaring up and prescribes predisone.

While he said it was due to a UC flare, I had been in near-total remission of my UC for nearly a year and was currently having no UC symptoms. Feeling the same after finishing predisone, I head to my primary doctor.

He orders blood work, the results of which all come back immaculate. He suggests, mainly due to my pain when showering, fibromyalgia as a possibility. Initially, I refuse to accept this diagnoses, as I am one who needs to see evidence, so I push for further testing.

I have frequent appointments with my primary doctor, and seek a second opinion from another family doctor who also suggests fibro. I go to my gastro to see if he thinks my joint pain is arthritis associated with UC and if my current symptoms are just a flare up as the UrgentCare doctor suggested. He says arthritis associated with UC is not as widespread as I am experiencing, and he also suggests fibromyalgia upon hearing my symptoms and checking for trigger points. Go to a neurologist. She has no clue what’s going on, but orders test after test to rule out diseases such as Lupus, MS, ALS, and Parkinson’s. All tests come back negative. Go get a second and a third opinion from two other Rheumatologists. Both suggest fibromyalgia, and one is sure of it after ruling out Lyme Disease.

I did not inform any of these doctors that fibromyalgia had been suggested (mainly because I was so stubborn to accept the diagnoses myself). All sent me through an ungodly amount of testing and I was going in for blood work on a nearly bi-weekly basis.

January 2012
: I finally accept my diagnoses of Fibromyalgia.

In less than a month I went from running 3 miles 4-6 days a week and lifting weights 3-4 days a week, to being bedridden and bound to a wheelchair or walker my entire Christmas break. My social life consisted of my parents and my doctors appointments. And all of it happened before my last semester of university.

So now, with graduation looming near, I am determined to graduate. My fibromyalgia is severe, and I’ve yet to find an effective treatment, but I will do it. I pinky promised myself I would - so you know it's serious.

2 comments:

  1. You can do it girl! :) It's so hard accepting a diagnosis and accepting the limitations with Fibro and our assorted ailments. I'm glad to meet you through blogger and look forward to reading your posts.

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  2. don't give up. it takes time to find what helps and what makes it worse. be patient with yourself.

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