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37 Posts
Where do I start? I am sitting here in tears as I type this. I guess I need to vent and ask a few questions... Here goes... It is difficult to compose this as my mind is missing in action, most of the time.
It all began in 1993. I woke up one morning and my back was out. I had a fall about 3 months prior to that, but seemed to be ok. I went to the emergency room in severe pain that day and was told I had spondylolisthesis, basically a birth defect as they called it. I was in my 30's and never had a problem like that before. They said the fall had nothing to do with my pain or condition. They gave me pain med. and said to lay on the floor for a week. Well, I did that and the pain eased up some but never went away. I became accustomed to the pain and went on for 3 years until I could barely walk. I tore my stomach up with all the Aleeve I took everyday. I ended up in the hospital having lower lumbar back surgery with rods and screws . It turned out that my back was fractured all that time.......... I think that is when the "Lupus-Beast" came alive in me and no one knew or bothered to look... I have never been the same since.
Six months later I end up in the hospital with severe lung problems, twice.. They said it was Asthma. I had never had Asthma before.
Six months after that I need more back surgery, because the "JOINTS" in my back were causing a compression. Oh, and all this time I had a red rash on my face that they called "Rosacea".
Next few months, my hands and feet start turning red, white and blue. They tell me it is Raynaud's Phenom. due to the hardware in my back. Don't worry about it and just dress appropriately in the cold. Me, I was clueless, didn't have a computer then.
Next thing, I get high blood pressure, gastric reflux,nasal polyps and severe fatigue. Not to mention body aches the whole time. Back has never stopped hurting, but at least I could walk..
Four years ago I wake up with a crick in my neck that would not go away. Doctor tells me it's a little bulged disk. It kept getting worse, I kept getting worse. Last year I ended up at my doctors office like a crazy person, I could not stand the pain throughout my body. I insisted on every test known to man to be ran on me, complete profiles of everything. Two weeks later I am told to go see a rheumy, my ANA was positive. I got diagnosed with Lupus and Fibromyalgia and was put on Plaquinel.
The plaq. has helped my hands, knees and ankles, not my spine. I started 6 months ago with headaches, my head tilts to one side due to my neck and my back kills me. Had an MRI that looked horrible. Saw a spine specialist today and was told my vertabrates in my neck have collapsed and my hardware in my back is unsteady and a complete mess... I need a Myelogram of my full spine. I had a myelogram 12 years ago, and it was like a form of torture. I am so scared to have this test.
Has anyone had one in the recent past? Also, is anyone having these severe spinal problems? I feel like I have spinal lupus, is there such a thing? I don't know what to expect, the dr. said there are several things that need to be done, but he needs the test results asap. I am so sorry to have went on and on like this. I have never put my story into words like this before. I feel a little less depressed getting this off my chest. Thank God for this site.
It all began in 1993. I woke up one morning and my back was out. I had a fall about 3 months prior to that, but seemed to be ok. I went to the emergency room in severe pain that day and was told I had spondylolisthesis, basically a birth defect as they called it. I was in my 30's and never had a problem like that before. They said the fall had nothing to do with my pain or condition. They gave me pain med. and said to lay on the floor for a week. Well, I did that and the pain eased up some but never went away. I became accustomed to the pain and went on for 3 years until I could barely walk. I tore my stomach up with all the Aleeve I took everyday. I ended up in the hospital having lower lumbar back surgery with rods and screws . It turned out that my back was fractured all that time.......... I think that is when the "Lupus-Beast" came alive in me and no one knew or bothered to look... I have never been the same since.
Six months later I end up in the hospital with severe lung problems, twice.. They said it was Asthma. I had never had Asthma before.
Six months after that I need more back surgery, because the "JOINTS" in my back were causing a compression. Oh, and all this time I had a red rash on my face that they called "Rosacea".
Next few months, my hands and feet start turning red, white and blue. They tell me it is Raynaud's Phenom. due to the hardware in my back. Don't worry about it and just dress appropriately in the cold. Me, I was clueless, didn't have a computer then.
Next thing, I get high blood pressure, gastric reflux,nasal polyps and severe fatigue. Not to mention body aches the whole time. Back has never stopped hurting, but at least I could walk..
Four years ago I wake up with a crick in my neck that would not go away. Doctor tells me it's a little bulged disk. It kept getting worse, I kept getting worse. Last year I ended up at my doctors office like a crazy person, I could not stand the pain throughout my body. I insisted on every test known to man to be ran on me, complete profiles of everything. Two weeks later I am told to go see a rheumy, my ANA was positive. I got diagnosed with Lupus and Fibromyalgia and was put on Plaquinel.
The plaq. has helped my hands, knees and ankles, not my spine. I started 6 months ago with headaches, my head tilts to one side due to my neck and my back kills me. Had an MRI that looked horrible. Saw a spine specialist today and was told my vertabrates in my neck have collapsed and my hardware in my back is unsteady and a complete mess... I need a Myelogram of my full spine. I had a myelogram 12 years ago, and it was like a form of torture. I am so scared to have this test.
Has anyone had one in the recent past? Also, is anyone having these severe spinal problems? I feel like I have spinal lupus, is there such a thing? I don't know what to expect, the dr. said there are several things that need to be done, but he needs the test results asap. I am so sorry to have went on and on like this. I have never put my story into words like this before. I feel a little less depressed getting this off my chest. Thank God for this site.
. I hope, that your future is less painful, now that you are under treatment for Lupus. Thank goodness, you were so insistent on getting the right tests done.
