I am a 62-yr. old married mother of 4 grown children. In 2002, I started having migraine-type headaches which occurred at least once a week. I'm fairly sure that stress and hormones were a factor. The headaches were not classic migraines but they still were enough to cause some serious inconvenience. A few years later the headaches became less of a problem- but within the same time period that I noticed my headaches decrease.. I experienced severe wrist pain, first in my left wrist, a few days later in my right. Later the same week, when I was driving, I turned my head to check before changing to the left lane. As I turned my head, I felt excruciating pain in my neck. Wow! Over the next weeks and months, the pain spread throughout my body. I had no previous physical injury to explain these symptoms. Although I did have a stressful event that I think was a trigger for all this. My 19 yr. old son was diagnosed with melanoma and went to MD Anderson. He is still with us today, minus 17 lymph nodes.. Thank you God!
Our family was traumatized by this, all of us in different ways. My immune system, or my sympathetic nervous system was knocked out of balance leaving my 'fight or flight' button stuck on "ON". Actually, when my first born, which happened to be twins, arrived 7 weeks early, was when my nervous system was first made acutely aware of the fact that I had a 'fight or flight' button. Suddenly, there were loud sirens, flashing red lights, and babies crying. (The sirens and flashing lights were in my head. The babies crying... were in their cribs.) Before this, I had never taken care of babies, and now I had not one, but two, and they were tiny, didn't sleep and wanted to eat all the time!! Yes, that's when this all started... 32 years ago. And all that time I've been ready for whatever emergency might befall me. That's why I hurt, my muscles are old and tired.
So when I started experiencing chronic pain-
I went to a rheumatologist who did blood work, and based on my ANA being 1:640 and my body pain, he diagnosed me with Lupus and prescribed Placquenil.
Plaquenil Sulfate may(did) cause photopsia (flashes of light that can be caused by a retinal detachment or a migraine headache).
(DO NOT TAKE PLACQUENIL- EVER!) There are now better, less harmful drugs available.
Go through the appeal process with your insurance company, or the government, or whatever you need to do.. but Don't give up.. Jump through the Hoops, Politely Persist until you have convinced whoever you have to deal with that Placquenil is a bad drug & its side-effects will ultimately cause you more medical problems and cost them and you more money and grief.
The placquenil made me feel worse. I thought "this must be what it feels like to be dying". I took myself off the placquenil and stopped seeing the rheumatologist and went back to my GP who put me on Methotrexate. This had no effect. My GP declared me to be "an enigma" (I knew that already) and suggested that I see a different rheumatologist.
The second rheumatologist said that I didn't have Lupus, (based on a newer, lower, ANA test result) She told me, "You have degenerative arthritis!"
I am 5'5" and weigh 114 lbs. I am fairly active and for my age, and I'm unusually agile. My joints don't hurt, the inside of my bones hurt!
I decided that her diagnosis was wrong and that I wasn't coming back, and even though I knew what her answer would be...for my entertainment I asked her, "Can I get better?" She seemed so indignant! Of course her answer was "No!"
So then I went to a orthopedist who was great and he said "You don't have any more degeneration than what would be normal for my age." I knew that. He was the best of the doctors that I had seen since this all started because he listened to me and believed what I told him. But he didn't know what to do with me or what exactly was going on in my body.
At this point, my most recent ANA test was 'normal' but my pain was still pervasive and I was experiencing fatigue.
After several different doctors making wrong diagnosis, and giving me wrong medications I have settled with 3 hydrocodone, spread out through the day, supplemented by ibuprofen. I also take 20 mg. of Alazopram at night for sleeping, 1 Fluoxetine in the a.m. and Vyvanse for energy.
I have occasional rapid heart beat (210+-) and when this occurs it always is a reaction to stress. Last week I went to the allergist for my weekly shots (that help) and my blood pressure was high. I never have had high blood pressure! So, I made an appointment with a heart doctor before the end of the year to save on insurance. On December 16th I had an ablation and apparently it was successful because I have not had 'racing heart' since the procedure.
The allergist told me that my parasympathetic nervous system is out of balance. I knew this. I asked him how to get it 'back into balance' and he said that I need to avoid the things in my life that cause me stress. After laughing, I asked him if he could write me a script for this.
So maybe I should start packing for my new life- living in peace somewhere away from here.
I need to cover the rapid heart beat info. more thoroughly but I need to stop typing and go get ready to see the chiropractor...who makes me feel better.
I know that whatever ails me is related to how my personality deals with stress and still believe that I can get back to feeling more energetic and less fatigued.
God is good and I trust Him. I want to spend the rest of my life doing whatever He wants me to do and glorify His Name.
This life is temporary.
The next one is forever... John 3:16
Jul 24, 2009
Apr 28, 2011