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View Full Version : Really bummed!!! (long...sorry)



Deana
08-29-2005, 10:53 PM
Hi guys,
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:

hippimom2
08-30-2005, 06:44 AM
Deana, I am SO sorry that this is happening to you and that you have no answers as of yet. I think there is nothing more frustrating than knowing you are sick but the doctor is unable to determine what is wrong. I think there are a lot of people on this forum and others who have been in your shoes. I have read about a lot of people who had to wait several years for a diagnosis. I was in a similar situation too. My first rheumy brushed off my symptoms and said I had fibromyalgia, but I knew something more was wrong. I slowly began developing more symptoms and got a new rheumatoogist and am now being treated for lupus but still don't have the official diagnosis, which can be frustrating. From all your symptoms it appears that something is going on in your body (it is not all in your head and you are not crazy). The elevated sed rate means that you have inflammation in your body. Usually people with fibromyalgia do not have elevated sed rates. Anemia is also common in lupus and other autoimmune diseases. My understanding of a lot of the autoimmine diseases is that symptoms can develop slowly over a long period of time and it can take years to get an accurate diagnosis.

Don't give up. keep a log of all your symptoms. I also find that if I am able to go to the doctor when I am in a bad flare and in unbearable pain, more things turn up on my labs. Hopefully others will be along with some other suggestions. We are here if you need to vent or have more questions. Please let us know what continues to happen. Take care and I hope you find some relief soon.

SoleSinger
08-30-2005, 09:40 AM
The squeaky wheel gets the oil... SOMEONE has to be able to help you!!! I had to go to the emergency room at a teaching hospital just to get some decent attention. And when I did, I found that if I hadn't, I may have died of kidney failure!!! I don't think you should wait!! You never know what could happen if you do!

lexis214
09-06-2005, 08:02 PM
Wow, I can relate to everything you are saying. The FATIGUE is unreal. I began taking plaqunil(ms) and the rash on my forarms cleared up but I am still so tied that I fall asleep instantly if still more than 5 minutes. I have even fallen to sleep on the toilet while using the ladies room. I am actually falling asleep now as I type.
I don't know when or if this symptom will ever go away, in the meantime I will just take t a moment at a time. I do wish you the best of luck while you are searching for an answer.

Angie

bella
09-15-2005, 07:55 AM
Hi, everyone. This is very difficult for me because I haven't been able to completely accept it. I was basically on the specialist merry-go-round for a year when I was finally sent to a Rheumatologist. I had all these symptoms, but no one could find anything. I was constantly fatigued, headaches, body aches, major chest pain and shortness of breath, leightheaded, hair falling out, sores, easy bruising. And no one could find anything. I started feeling as if they all thought it was in my head. the only thing that really would come up was a rapid heart rate. Finally my pcp decided to just run a bunch of blood tests and my ANA came back positive. she sent me to a rheumatologist and he did the test over and and it came back higher, yet he thought it was only fibromyalgia but that Lupus could also be it. well, three months later, things were just as bad, or even worse so he put me anti- inflammatories, which weren't helping much. I ened up in the emergency room which finally prompted a diagnosis and now I am taking Plaquenil. But, like Isaid, it is still something difficult for me to accept and I just rebelled against it. I didn't take care of myself, I had very little appetite and skipped some doses. Bad idea. I was in the emergency room again, but they made me feel as if I was just imagining how bad I felt. That night I just broke down and cried. I am very depressed, i feel as if it is not fair and that no one understands, except those who are going through it as well. Some of my friends who know about Lupus, or think they do, just dismiss it, saying things like be thankful it's not cancer. that people with it can still live long normal lives, that it could be worse. And I understand that, but it is insensitive. I know Lupus is an unpredictable illness and you never know when something can happen, even if you are taking care of yourself. and aside from it being so awful physically, it impacts you emotionally. I mean, how can someone be expected to accept and come to terms with having a chronic illness that easily? It just feels so surreal to me. I can say I have it, but it's a foreign concept to me still. I can take all my medication at the right time, and still I feel as if it is not happening to me. I have felt so alone in this, although I know I am not the only one. So, I am hoping the discovery of this forum will help me through this.

Deana
09-16-2005, 10:29 PM
Bella,

Thank you for replying to my post...although I almost wish you had written it as a new thread...since I know so many others would have replied. I am afraid it will be "lost" down in this thread.

I can say that the group here is GREAT!!! I think you will really be happy you found this forum. It has helped me a lot and I don't even have an official diagnosis. I know how you feel...it can be so scary and lonely to find out that you have something that most people know very little about or if they do know anything...it is usually wrong! That is what is so great here!!! They know EXACTLY how you feel and have already been there. And there is a wealth of knowledge here! I have learned a lot here! I have been looking at other Fibromyalgia boards...since that seems to be all the docs can come up with on me...and none of them that I have found thus far are as well organized and as accepting as this one :cry: I am going to keep looking, since I want to know as much as possible about what is going on in my body. It seems the symptoms of FM (and chronic fatigue syndrome) are VERY similar to lupus. I wonder if they will not find out in the future that they are somehow related?? I am trying to battle mine with medications, chiropractic and diet changes. We will see how it goes.

I think knowledge and finding others to whom you can talk and relate will be the best thing to helping you get through these hard times. I don't think we ever need to let this defeat us. I don't consider that "accepting my illness". But I do think that we need to know as much as possible about it and find others that can share with us from their own experiences to keep us from making some mistakes and to not feel so isolated.

I wish you the very best my dear Bella. I LOVE that name. My husband and I considered naming one of our daughters that name, but will have to hope for a granddaughter now... :lol:

Please take the time to intoduce yourself to the whole group. I know that they will be SO glad to have you here!!!

Good luck and HUGGS,
Deana

khix
11-20-2005, 07:09 PM
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!