Really bummed!!! (long...sorry)
Today I got the good news bad news thing. I went back to see my rheumy for my follow up appointment. He looked at me and told me that all my lab work was normal. My RF although positive last time was not this time. My SED rate and CRP were still SLIGHTLY elevated, but down from last time and not anything to worry about. I was SLIGHTLY anemic, but was probably diet related. My ana was negative and all of the related componets showed no signs of lupus. My kidneys look good....there was something with my thyroid that was normal but indicated that I would probably have hypothyroidism in the future. Everything was fine. He said that it was possible that I had some type of viral infestation that was causing something like chronic fatigue syndrome, but that he did not generally test for it, since there was really nothing they could do for it and it was just a waste of time and money. I told him how very frustrated I was...that I did not understand why I kept having all these odd symtoms....fevers, SEVERE fatigue...constant headaches,swollen feet and painful feet, nose and mouth blisters, my hair falling out, bumps in my head, swollen glands....he just looked at me very sympathetically and told me how sorry he was, but that he knew nothing else to do. He said he would be happy to send me to an infectious disease person if that was what I wanted and that he would probably run all those tests he was talking about...looking for viral infection, but what was he going to do if he found it???? I told him that I understood that there may be nothing that could be done, but at least I would know.....I asked him if he knew why the inside of my elbow hurt so bad....it is one of the less severe symtoms I have, but it really aggravates me. He shook his head yes, and came over and began to push on all these odd places on my body that were sore...he said it was fibromyalgia type pain...and that we could inject it with steroids if I wanted, but that he did not generally like to do that, as the pain just seemed to travel from place to place and we would just be chasing it. I cried! And felt like a total idiot. Here I have spent all this time and money and still just came away feeling like I am making all this up!!! He finally said that we would try 100 mg of Ultram 4xday for the pain and Neurontin for the joint pain, along with provigil to see if that would help with the fatigue, since I told him that I would fall asleep while I was writing...or typing, or waiting in his office!!! I guess I am really frustrated...and he said he was as well. He was really very nice....but it made me just want to lay down and die!!! My husband and I had a family wedding this last weekend. I did not feel well enough to go, but I did anyway. I was so tired by the time I got there that I did not even want to dance, but I tried. I could not get around the dance floor more than twice before I had to sit down. I was so stiff and off balance that it was hard for us to dance...and I HATED that!!! We have always danced so well together and I feel like that has been taken away from me!!! I just wanted to sit there and cry through the whole thing. And while I knew my husband was gracious and just did not say "What the hell is wrong with you??" I know he was thinking it. And now I am SO sore and tired from the whole experience that I cannot hardly move...let alone work well....not that I could to begin with anyway!!! I know that there is a fibromyalgia clinic here in town, but I don't know much about it and I too wonder...is there anything that they can really do? Am I just going to spend a boatload of money for them to tell me to take their special vitamins and eat right, along with exercise and I will feel better? I know I should be grateful that everything seems to be fine....I should be grateful that all my major organs are working well...I just don't understand why I feel so bad???? He told me to come back in a month to see how these pills are working for the "fibromyalgia" and then he would not need to see me for another year, unless something more drastic came up. He said in a year they would run all the tests again and see if anything had changed??? I am SSSSSSSSSSSSSSSOOOOOOOOOOO frustrated!!! I know that you all have gone thru this at some point in time. Should I just shut up and go on with my life as best as possible or continue to hunt and search and scream and yell?? I do not know what else they could do??? I have had all these tests...MRI's blood work, CT scans, x-rays, urine tests...and all is well??? Any suggestions....or should I just see a psychiatrist instead??? Anyone else go through all this only to be DX'd later? They can find nothing wrong!!! I know they are trying....am I just wasting my time and theirs???
Please help....I have nothing left to hold on to....
:cry: :cry: :cry:
Deana-I understand your situation!
Deana, I completely understand your situation. I too have had the exact same symptoms as you, and have had my lab work come back negative. My symptoms have been present since May 05. I have seen a rhuemy at a medical school who calls me a "mystery". She has tried me on several arthritis meds with little to no results. I know what you mean about just going on how you are and trying to "suck it up" versus screaming for someone to help. Hang in there. If your doctors come up with a possible cause for your problems, please let me know. We are just guessing and playing with meds right now (which I do not like!) If we come to some kind of solution, I will let you know! We just have to hope someone will get to the root of the problem. Right now, the only thing that really helps for me is rest, light exercise, and trying to keep my stress level down. Take care!