Nine years ago I had to leave my job. My boyfriend at the time found me on the bedroom floor curled up in the fetal position because it was just too painful to change out of my uniform. The hospital and my doctor found signs of some kind of virus, infection, or inflammation in my blood work, but had no idea what it was. As my labs improved, my symptoms did not. My doctor (like most at the time) told me my blood work looked fine, so therefore I must be, and to go back to work. I refused to accept "it's all in your head" and demanded a referral for a second opinion. I received 3... after reviewing 6 weeks of basic cbc/diff panels, negative Lyme disease, ANA, and rheumatoid tests, he gave me referrals to a psychiatrist and three rheumatologists. I didn't bother with the psychiatrist, but after a brief physical exam and lab reviews, all three specialists came to the same conclusion: fibromyalgia. Only one tested a bit further due to an outbreak of Fifths disease in the area and it came back positive. Then started round after round of medications to try to help me. Two years later, I tested positive for Lyme Disease. Since then, I've had 8 (possibly 9) recurrences, a slew of new symptoms, some stay, some only last for weeks and are gone for months, but nothing was done except for more pills to treat the symptoms. Then I somehow got Epstein Barr Virus. And again, nothing was done.
Nine years later, I still don't have any more answers than when I first started. I've done some pretty extensive research on Fibromyalgia, Lyme Disease, and EBV. Two are viruses that your body fights off in its own time. In rare cases, Lyme Disease can recur and EBV will recur if the situation presents itself, such as severe stress. I'm on prescription strength levels of Folic Acid and Vitamin D just to keep those levels at the LOW end of normal...my bones and joints ache, I went from chronic migraines to cluster type headaches--spending 2-3 weeks lying in bed, no television, no phone, no nothing except round after round of migraine medication, Percocet, and Xanax because once I get it under some semblance of control, the slightest stimulation is enough to make it feel like my head is going to explode. I go through phases of my hair falling out (not the typical stress induced hair loss, hereditary loss, or the normal seasonal "shedding" we all have) I'm talking about handfuls at a time... clogging the shower drain when I wash it hair loss. I was told to take more B-Complex and Vitamin E and try to control my stress levels. I go through weeks to months at a time not being able to spend any time in the sun because I break out in thousands of tiny itchy blisters. So then I'm put on steroids. But it's all Fibromyalgia. And I'm just not buying it anymore. I have no doubt that the disease actually exists... I subscribe to an online group where there are literally thousands of people who suffer from the disease.
My doctors have just about given up as to what is really going on, rather than taking all of my symptoms as a whole and finding out what's REALLY going on. This week was no exception. For the past several weeks, I've spent between 18 and 20 hours a day sleeping and it still doesn't feel like enough. My recent labs indicated that something is going on... possibly another virus, but my doctor wants me to start on a second anti-seizure medication assuming my sleeping is the result of depression. Again--more pills to deal with symptoms, but no answers. I've made it a point with every doctor to make sure they know my history. I've never felt healthy. It was always hypochondria or growing pains or PMS or some excuse. I was hospitalized over 30 years ago due to a massive toxic waste dump fire and have found a 7--yes SEVEN--page list that the DEP composed of what they found at the site. That list does exclude the radioactive materials that burned. I've lost two family members because of the effects of that fire, have a parent on dialysis, possibly the result of that fire, but the doctors just don't know and I've spent most of my life feeling like hell. But it's just Fibromyalgia, so just treat symptoms as they crop up and send me on my way. And I feel like I'm back at square one. I've been referred by friends to two doctors, both came with glowing reviews and seemed absolutely perfect, but they do not accept any insurance. I pay in full up front and hope Medicare reimburses me, but I just don't have the money.
It's been a most trying week, but I did make an appointment with my neurologist--who in the past has taken my symptoms more seriously and has thought outside of the box when it comes to finding out what's wrong. Hopefully he'll be a bit more helpful and encouraging. I just know something is wrong, but have no idea what. And I'm tired of being told to take more pills to manage symptoms when there seem to be a dozen different diagnoses, but no underlying cause to explain why. I intend to find out what the underlying problem is by the end of this year... even if I have to go to three dozen doctors and be sucked dry in lab tests... I'm going to have answers because I just can't live like this anymore. And no one should have to.
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