Dear Gayla, I was reading your story, I'm Really Not Crazy! and it gave me a lot to think about. From time to time, I have go into the military clinics complaining of tremendous fatigue and pain. Back in 1998, I told them I had this strange "travelling thing" that would last for about 2 or 3 weeks at a time. It would start in my shoulders/neck, move down to my hips and knees, and then disappear. Sometimes the pain would stay gone for months, and sometimes it would start right back in again after a few weeks. At the same time, there was a tremendous "tiredness" that I just could not shake, not matter how much I slept. I couldn't seem to stay up for more than a few hours at a time. Most of the time they gave me Motrin 800 and told me to go home. Finally, a doctor ran some blood tests. Everything came back fine, except I had a positive ANA of 640. The Doctor said that meant nothing by itself. He said the "Raynaud's" was probably causing it. I was diagnosed with Raynaud's disease when I was 10 years old. I am 45 now. I kept coming back to the clinic about every 3 months, complaining of the same aches..and soooo tired! I was told that I needed to see a counselor, as this constant feeling of tiredness is probably due to some sort of depression. They wanted to give me prozac. I said no. Several doctor's visits later, I was sent to a Rhuematologist at an Army hospital in Northern Va. He listened to my complaints. He concluded that I had "Fibromyalgia". And then....a female doctor said, "You know, this kind of looks like Lupus. But you have to have over 4 of the symptoms of Lupus before it will be diagnosed as such. You have 3 of the symptoms. So for now, I am just going to call it the "Mary Thing". So.....here I am walking around, tired and aching because of the "Mary Thing".
I was reading your story, I'm Really Not Crazy! and it gave me a lot to think about. From time to time, I have go into the military clinics complaining of tremendous fatigue and pain.
Back in 1998, I told them I had this strange "travelling thing" that would last for about 2 or 3 weeks at a time. It would start in my shoulders/neck, move down to my hips and knees, and then disappear. Sometimes the pain would stay gone for months, and sometimes it would start right back in again after a few weeks. At the same time, there was a tremendous "tiredness" that I just could not shake, not matter how much I slept. I couldn't seem to stay up for more than a few hours at a time. Most of the time they gave me Motrin 800 and told me to go home. Finally, a doctor ran some blood tests. Everything came back fine, except I had a positive ANA of 640. The Doctor said that meant nothing by itself. He said the "Raynaud's" was probably causing it. I was diagnosed with Raynaud's disease when I was 10 years old. I am 45 now.
I kept coming back to the clinic about every 3 months, complaining of the same aches..and soooo tired! I was told that I needed to see a counselor, as this constant feeling of tiredness is probably due to some sort of depression. They wanted to give me prozac. I said no. Several doctor's visits later, I was sent to a Rhuematologist at an Army hospital in Northern Va. He listened to my complaints. He concluded that I had "Fibromyalgia".
And then....a female doctor said, "You know, this kind of looks like Lupus. But you have to have over 4 of the symptoms of Lupus before it will be diagnosed as such. You have 3 of the symptoms. So for now, I am just going to call it the "Mary Thing". So.....here I am walking around, tired and aching because of the "Mary Thing".
I can't take anymore Motrin 800-it tears up my stomach. So I resort to Tylenol. I don't sleep well. I used to have 20/20 vision. Not anymore. The pain of the "travelling thing" usually starts in my right shoulder. And it is my right eye that seems to be blurring the most. One morning I woke up and I could barely see at all-out of either eye. Complete blurriness. I have no idea what caused it. I stumbled down the steps to find my glasses (which are not very strong), and I put them on. They did not help. I could barely see. I was panicking. There is an optometrist right up the street, but I could not see to drive. About an hour went by, and things began to clear up a little. As soon as I could see enough to drive, I went to the optometrists office. I had to wait for another 30 minutes after I got there. By then, my eyesight had come back to normal. He said he didn't see anything wrong. I told him that when I had woken up that morning, I could barely see, and that my eyes had stayed like that for over an hour. He said that was strange and he had no explanation. I don't know if he even believed me. And now, I notice that when my right shoulder hurts, muscles are stiff...my right eye starts to blur. So, when I read your story about your eye, I thought of mine and it's frightening. But there is nothing I can do about it. The eye doctor sees nothing out of the ordinary. No one wants to help.
Sometimes I wonder if this "Mary thing"....(could be Lupus, could be Fibromyalgia, could be we don't know" ) is going to wear me down so bad that I am just going to fall over........
Unfortunately, the lady Doctor who called it the "Mary Thing" and told me that I would probably know the answer in about 5 years or so (it has been 5 years)....was a doctor at a military clinic in Mississippi. I only saw her once. I don't recall her name, and I wouldn't even know if she is still there.
I am now living in Virginia. The Doctors here just continually gave me Motrin 800 and told me that I needed to see a counselor because I was tired-which meant I was depressed. I finally did go in to see a counselor. I told her also ...that I was so tired sometimes I just wanted to lay down and go to sleep forever. Didn't have enough energy left to be alive. She wanted to prescribe Prozac. I said no. A few months went by. I went to talk to her again. I was sitting in the lobby waiting for about a half hour. On that particular day, I was aching all over and feeling stiff. When she finally came out to get me-I stood up. When I tried to stand up, I suddenly got "stuck". The muscles in my back and shoulders had locked somehow-cramped up (rather like writer's cramp in the hands)....and I fell down to my knees. "What's wrong, What's wrong!" she said. "Should I call a doctor?" "I am stuck," I gasped. "Just rub my shoulders...my back...unlock it..."
I could barely talk. Tears running down my face. It REALLY hurt. I couldn't move. Again she asked, "Should I call a doctor". "It won't do any good", I sighed. (and it wouldn't. All they will do is give me more "Motrin 800") So she rubbed my shoulders and my back until I could stand back up. FINALLY, she realized there was a problem other than "all in my head". She asked me to explain the pain...and I told her about the travelling thing" that goes along with the tiredness. And then something strange happened. She told me something she had never mentioned before. She has a 13 year old daughter. And her daughter (who had complained of much the same things that I had just described) has just been diagnosed with Lupus. That happened 2 weeks ago. Maybe she can help.
Yes, looking back I do remember things that happened when I was very young. When I was about 6 or 7, I suffered from "growing pains" or so my mom called it. My knees hurt so bad, she would rub Vicks on them and wrap them up at night so I could sleep. From time to time, a rash would appear on my hands that no one could explain. I was told it was because of the Raynaud's and my sensitivity to cold weather. I was also diagnosed with Raynaud's when I was very young. The doctor said it was Raynaud's Disease and not Raynaud's Phenomena....because he saw symptoms of no other underlying problem. I have had recently bright red, itchy rashes appear on my neck-Doctor said it is not Lupus because it is not on my face. I don't know. I have good days and bad. The only way I get through the bad tired days, is knowing that the hurting and the tiredness usually goes away again. Seems to be coming more often however.
If anyone looked at the inside of my medicine cabinet, they would see that I am trying my best to cope. I have Buffered Vitamin C, and Flax oil, and Fish oil (thinking that somehow swallowing "oil" pills is going to take away the aches)..Fact is, I have a whole cabinet full of herbs that I take--desperately hoping that I am going to come upon this miracle combination that is going to make it all go away. Nowhere else to turn except to those Motrin loving doctors-who really don't care one way or the other. I would love to someone to give me a massage for a couple hours every day!
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