There has to be an answer! There just has to be. Please God.
At home again, I hit the internet trying to find out what was causing all this grief. I found an article on fibroids of the uterus. Everything matched! I took that into my doctor #6 who now regarded me as a lazy, drug-chugging lunatic, but he felt it was a possibility. Upon my insistence, he allowed me to get more testing and to see a gynecologist again. One thing led to another, and in January of 2000 I had an abdominal hysterectomy. There were multiple fibroids, a cyst on my right ovary, and I had adenomyosis, where the lining attaches itself directly to the wall of the uterus. Labour is way more fun and productive. Right off the bat there was an instant improvement, and I was sure I had finally beat it. I could walk, stand, and sit longer than before, and the pain had been cut in half.
I was back at work doing small errands, not picking up anything over ten pounds, going home when I got tired, and not overdoing it. Even though I was being very careful, I never completely recovered. In fact, once again I started to get worse. The pain was less, but the numbness, tingling, burning and aching were returning slowly. Everything else stayed the same as before surgery.
Then exactly two weeks to the day I had a terrific accident. A car had stopped immediately in front of me while I was watching for what I thought was a pedestrian about to cross the road ahead of me. The roads were wet and when I looked straight ahead of me it was too late to do anything but hit the brakes. I had a meridian to my left and a car coming up on my right, leaving me no place to go except into the back of the car with the pickup I was driving. The seatbelt sat right across my incision, but I had braced my legs against the floorboard. As a result I escaped damage.
Then it was time for my M.R.I. around three weeks after my surgery. I almost cancelled it as I was sure I was going to get better, and somebody else would need it more than I did. My friends and family urged me to go anyway. I felt selfish and guilty. I knew what it was like to be suffering immensely and how the feelings of desperation swallow you up. But then again, what if there WAS something else there? It was that "if" that made my decision.
As usual, I continued to get worse. I even went through a colonoscopy in an effort to find out why this was happening. Doctor #6 went over the results with me and told me I would probably live forever, my tests were that good. I was even advised not to bother getting another one. When I asked why I still wasn't getting better, the answer was that sometimes it takes up to two years to totally recover from an abdominal hysterectomy. Then why am I getting worse? No answer.
Then the M.R.I. results came back. They had found something but couldn't determine what it was so we needed to do it again. Maybe there's something after all? After the second sets of results came in, I was told that whatever it was had disappeared. Too bad my symptoms didn't disappear with it.
Back to square one again. Now there was also a shortness of breath (got to quit smoking and find a way to get in shape), night sweats so bad I'd wake up soaked and have to change my sleepwear, my dreams were getting stranger than they had ever been, and I experienced weird twitches on my face that I was sure people could see. My hands and feet were always cold. If I got cold to the bone, the pain would intensify and it would take hours to warm up and days for the pain to simmer down. Some days were better than others, with no rhyme or reason. Believe me, I was monitoring every possible contributing factor. My balance seemed to be getting worse and I found myself getting dizzy to the point of blackout but not total collapse. (Ok, that's it, I have to quit smoking.)
Sometimes I had swelling. It was most noticeable in my hands and from the knees down. (Maybe I consumed too much salt?) I was always tired and in a dreamlike state when left alone, but that's just the pain wearing me down, and lack of sleep. I'd even bet that the ringing in my ears, sound sensitivity (especially to high-pitched, squealing children), the floaters and light sensitivity were all due to lack of sleep as well. Of course, that would also explain why I'd reverse letters and numbers. I'm not dyslexic, just ask me.
I'd find myself at the wrong places and was feeling like my mood swings were very obvious to others around me. You'd get depressed and angry too if you were a prisoner of your size sixteen non-functional body! If I could just get some sleep, it'd all go away. I'd be able to think clearer. You know what else? Maybe this IS all just in my head. Is it possible that I'm insane? Many times I asked myself that question, and the answer that I kept thinking of was--if you're asking if you're insane, you're probably not.
During the four years of suffering, ever-increasing, chronic pain, and other annoying unexplained symptoms, I was chastised and ridiculed. I never gave up though. I was always searching for an answer and asking to have this test or that test done. Each negative result beat me down just a little more but still I wouldn't give up. After more negative tests a friend and I discussed the possibility of it being Fibromyalgia. After I researched it some, I thought it was worth pursuing. During that research I learned that it was very important to quit smoking as I was already oxygen deprived. If I were to quit, the pain would lessen some.
There was my motivation. Time to just do it. Three months after I got the referral I was finally diagnosed as having Fibromyalgia by a rheumatologist, even though I did not believe that twelve of the eighteen pressure points had hurt upon a gentle poke. He's the specialist so he must be right. Besides, at this point, any answer was better than no answer at all. Given this revelation at last, I continued to research Fibromyalgia.
I went to pain management meetings to see if other people felt the way I do, and to learn what they were doing to cope with pain and function in life. It was here that I became aware of the fact that my memory was giving out and my concentration and comprehensive skills were shot. In other words, I had brain fog. It wasn't until later that I realized to what extent. I also learned that my klutziness that I cracked jokes about was becoming more frequent. When others started to talk about the smaller symptoms and the fact that we have a tendency to minimize, rationalize and justify them, I thought they were talking about me!
I became disgruntled with the idea that life would always be like this and there'd be no cure. It upset me that I fit right in. Everything fit, except for one thing--a nagging question in the back of my mind. If nobody knows what causes Fibromyalgia, how do I know for sure that it's not something else? Throughout the last four years I had asked for all kinds of tests and I got them. But what if I didn't ask for the right ones? Gut instinct was telling me that somewhere I had missed the boat. Others would call it denial.
After reading article after article on Fibromyalgia, I learned that Fibromyalgia should only be diagnosed after all other possibilities have been ruled out. Some of the things that can cause Fibromyalgia-like symptoms that should be ruled out are: polymyalgia rheumatica which has an abnormal blood test, parvovirus B19, hidden cancers such as those of the prostrate or breast, low thyroid, side effects from a medication or illicit drug, rheumatoid arthritis, lupus, and ulcerative colitis. Infectious diseases such as hepatitis B or C, toxoplasmosis, or the heliobacter that causes stomach ulcers, and Lyme disease. Crohn's disease is another one worth testing for, but I decided to leave that one till last as it's said to be most unpleasant.
I brought in a list of possibilities to my family doctor (#6). By now we had finally developed a good rapport. Together, side by side, we went through my chart and ruled out approximately 75% of my list. With the exception of Crohn's disease, we tested for the last 25% of my list. Sometime after that I got a call from the doctors office. My tests had come in and the doctor wanted to go over them with me. Everything was negative, negative, negative and my heart was sinking until we came to the Lyme disease. Elisa test: REACTIVE!!! "You have Lyme disease," he said.
On my doctor's wall there is a picture of a frog half way down a crane's throat, but he's still trying desperately to strangle the life out of the crane. Underneath it says: "Never EVER give up!" All I could do was point at that sign as the tears streamed down my face. After four years of incredible suffering, finding myself unable to work full-time during the last three and a half of those, the emotional and psychological abuse I suffered from some of the medical professionals whose bedside manners were akin to Oscar the Grouch, I finally had an answer! One thing I will always be grateful for is my doctor's (#6) honesty as he told me right up front that he didn't know much about this disease. He advised me to see my rheumatologist for help with this. No problem. Thank you.
Feeling like I won the lottery, I took this result to my rheumatologist with expectations that he'd be happy for me and eager to start me on antibiotics. To my total dismay he said that females have a tendency to test falsely positive on the Elisa test and because my western blot tests both said negative, I did not have Lyme disease. "Besides, we do not have Lyme disease here."
Once again, my heart sank. I knew I was right and yet at the same time I was enraged at how he could be so closed-minded! "It's a good thing I didn't give you anti-biotics." It was obvious to me that he was wrong about all he was saying, because I took the time to research the basics of Lyme disease beforehand. Why hadn't he even considered this possibility when this should be one of his areas of expertise, especially with all of my symptoms and the proof I provided?
Obviously, I would have to find a Lyme literate doctor. In the meantime, I knew from my research that I should start on 100mg of Doxycycline twice a day at the least. In tears, I called my regular doctor's office and got in almost immediately. He couldn't understand why I got the response I did from the rheumatologist. He promptly wrote out a prescription for two months worth of Doxycycline. Since then, I have found a terrific, Lyme literate doctor who was willing to pursue this with me. I have acquired more positive testing and am undergoing treatment.
There is no doubt now that I have Lyme disease, not Fibromyalgia. I WILL get better. I now understand myself better than I ever have, and am able to forgive myself for my weight gain, my numerous dumb blonde moments (I'm blonde so I can say that), and for not trying as hard in the ways all the doctors told me to. I listened to my body--wasn't that what all these doctors were supposed to do to? In fact, I tried harder in other ways than anybody else I know.
I am amazed that I did not kill anyone--including myself--and that the entire team of medical professionals I encountered could not identify my problem.
If you or someone you know has been diagnosed with Fibromyalgia and went on to test for other possibilities, I'd be interested in hearing from you with the idea of putting together information so we can all learn and have accurate, affordable testing and proper treatment. Please e-mail me at firstname.lastname@example.org.
Dannie Cade, Canada