Point Of Grace

An online journal of a newlywed on the journey of marriage -- going through the different tides, the highs and the lows, the various points in life with the flaming desire to reach a point of grace. And with pun intended, this journal is my little space where I intend to share my thoughts and day to day experiences my point of view, the point of Grace.

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Location: Mount Joy, Pennsylvania, United States

Born and raised in Manila, Philippines but have been joyfully living in Mount Joy, PA, USA for several years now. Got married last February 2005 to a wonderful guy. Lovin' being Mrs. GGG!

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Saturday, October 28, 2006

Medical Journey Update

As you probably know, its been a roller coaster ride these past few months when it comes to my medical journey. I've been seeing 3 doctors - family doctor (general MD), neurologist and rheumatologist and I have been put through a lot of laboratory tests (yup, lots of blood work and pricking and poking of needles)and other radiology and vision imaging tests (MRI of the brain and neck, MRA of the brain and neck, x-rays, CT scans).
Because the MRI and MRA, CT scans and X-rays came out ok, (I wont go into the specifics of all those tests, it will be a long explanation and story). The laboratory tests, however, weren't all good. I tested ANA positive which normally means that there is a presence of an auto-immune disease in the person. My sed rate or sedimentation rate is constantly elevated which also means there is an internal inflammation. With those results, I was told to see a rheumatologist. I have unexplained chest pains and back pains, joints and muscles stiffness every morning and just a lot of pain overall.
Neurologist believes that the severe debilitating headaches I get is what they call intractable migraine (the kind that could last for days or even weeks when it strikes), thankfully, it wasn't a tumor, an aneurysm (as shown by the MRI), so the neurologist was hoping that the rheumatologist will be able to shed light and give me a clearer and more complete diagnosis as to what is wrong with me.
So last Thursday, I saw the rheumatologist and after asking me a lot of questions, looking at my test results, doing a physical check on me, (every point or muscle she squeezed or poked was painful!) and after ruling out a few things in her list, as well as looking at the medical history from the neurologist's notes, she believes that I have FIBROMYALGIA and chronic fatigue syndrome. My symptoms overlap between the two diseases. Each disease can afflict a person on its own or exist with some other auto-immune disease or together.
I have more blood tests coming up. Rheumatologist wants me to take this ANA panel blood test that will show more detailed and specific results and will help her come up with a medical regimen for me. She is still figuring out the best medicine combination, the dosage and the kind of approach when it comes to controlling the disease. Apparently, this is going to be a trial and error, hit or miss kinda thing and patients respond to different medicine concoctions or combination.
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Just to give you an idea of what Fibromyalgia (pronounced as : fi-bro-my-al-ja) is:
Other names: Fibromyositis; Fibrositis; Myofascial pain syndrome
Fibromyalgia is a musculoskeletal condition characterized by long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems, headaches, numbness in hands and feet and anxiety. Fibromyalgia can develop on its own or along with other musculoskeletal conditions such as rheumatoid arthritis, lupus or chronic fatigue syndrome.
The cause of this disorder is unknown. The disorder has an increased frequency among women 20 to 50 years old. The prevalence of the disease has been estimated between 0.7% and 13% for women, and between 0.2% and 3.9% for men. The overwhelming characteristic of fibromyalgia is long-standing, body-wide pain with defined tender points. Tender points are distinct from trigger points seen in other pain syndromes. Unlike tender points, trigger points can occur in isolation and represent a source of radiating pain, even in the absence of direct pressure.

Fibromyalgia pain can mimic the pain that occurs with various types of arthritis. However, the significant swelling, destruction, and deformity of joints seen in diseases such as rheumatoid arthritis does not occur with fibromyalgia syndrome alone. The soft-tissue pain of fibromyalgia is described as deep-aching, radiating, gnawing, shooting or burning, and ranges from mild to severe. Fibromyalgia sufferers tend to wake up with body aches and stiffness.

For some patients, pain improves during the day and increases again during the evening, though many patients with fibromyalgia have day-long, unrelenting pain. Pain can increase with activity, cold or damp weather, anxiety, and stress.

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Anyway, as for now, I'm on some medications to help me with the pain, it hasn't really helped much yet but I have been taking the meds for only a few days now and doctor said that it might not start taking effect until after 2 to 3 weeks of taking the medication so I have to wait and see. I have to go through more blood tests so the doctor can really evaluate the degree of my fibromyalgia and how we can control it.

This is going to be another journey on its own as we figure out how to control the disease. Its not curable but there is hope when it comes to living life with it. I am just happy as it is that it is not something worse like lupus. I've been worried about that. So not having lupus is one positive thing that I would like to look at from where I stand right now. Its very exhausting and taxing just to go through all the doctor's visits, laboratory tests and the waiting, is just agonizing. Its tough because in the midst of all these, work, chores and obligations do not cease ... so I have to keep at it while going through the medical journey , some days, its really overwhelming, exhausting and draining.

I wish to thank those who have been patiently listening to my woes, checking on me, praying for me and with me and climbing on board my medical journey. We continue on, onward and forward, hoping to find relief, getting answers from doctors and looking forward to waking up to painless days.

Needless to say, Patrick has been my anchor of strength and though I get frustrated and grumpy at times, he has always been the optimist and source of comfort and good laughs amidst the turmoil. :)


| Gracie G. posted at 11:21 AM | |


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