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Thread: Lupus and Fibromylagia, That's ME!!!!!!!!!

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    Default Lupus and Fibromylagia, That's ME!!!!!!!!!

    Hi Everyone, I am writting because I have a very unique and complex disease going on here!! I am in hopes that someone will beable to help me by knowing some type of research program that they can possibly put me in touch with me!!!! Doctors say that I am too complex and can not decide what to do with me or what is really going on with me!! And guess what I have heard this for the past 24 years different Doctors but the same story after a few visits!!!! I am to the point I am frustarated and running out of money for all the tests and different Doctors!! So anyway I am rambling and I do that alot as I get older!!! TEE HEE Twenty four years ago I was diagnoised with SLE, all my test were positive and somelike the LE Cell was border line positive, ANA positive, you know them all so well I am sure! So began the massive doses of steriods off and on thru the years! At one point I began to loose my vision permeanently and had to be stopped and fitted for glasses. In the early years my biggest problem was hives and angioal edema which was causing my throat to swell closed to the point I had to be intabated! And that lovely butterfly rash! A few years later things started all over again! This time the steriods threw me into Adrenal Glands insuffiencies. Then in 1998 I went into remission which seem to happen overnight???? And I stayed this way until 2002. Of course during that time I was diagnoised with Fibromylagia. Which I couldn't take the anti depressions meds or the Flexerile!!! But I was strong and I kept going. In the fall of 2002 I came out of remission. Only to have new added symptoms of course the hives and the angio edema were back with a vengence. My muscle and joints hurt me so badly that some days I could hardly move!! My hair was falling out, my mouth was sore and full of irrating little mouth ulcers! I work with Doc's and one was an allergist and he thought it was allergy related. So he tested me for lots of things and I wasn't allergic to essentially anything! Then he decided that I was possibly alergic to myself and he gave it some big fancy name. So he drew my blood spun it down, and then injected my own serum back into my body again! Bingo I highly reacted to my own blood! This Doc did not believe that there is a disease called Fibromyalgia and stated it was a cop out diesease! But the really big thing is that this year when I had the Lupus testing everything came back NEGATIVE! Here I am no longer with postive test results to explain why I am having all of the symptoms but no positive results!! So here we go again seeing different Doc's all giving me the same report, you are to complex it will take a Doc smarter than me to figure this out! And say no need to come back as I can't do anything for you! Now I am having to carry an epi pen around with me for the angio edema in my throat and back on massive doses of steriods oral and IV. And the only thing that was happening was I was gaining 5 pounds a week! And since I am on the FLUFFY side already I certainly did not need the extra increase in weight! So I just told myself I am thru and stopped taking the meds! When spring came and the symptoms were still with me I decided to start tanning or as I say Fake Baking! I thought what the heck I might as well go for skin cancer! I had every blood test and MRI and CT scan known to man trying to find what was going on! Well you are not going to believe this and I don't want to give any one false hope, however after the first week of tanning my symptoms started going away! and as long as I tanned about every 48 hours the symptoms stayed away. But if I went over this time span they would start coming back! So I have been tanning every since. That is six months now! My Fibromylagia is still in a turmoil and the OMT specialist I see for that is now considering trying me on Methotrxate. Which is not a good drug for me as I am IgA dificient and have been since birth! And this meds would totally distroy what immunity I have left! My hubby and mother are very supporative! So this lenghty entry is why I am seraching for some one out there who might want to give me a research group I could join with!!! And hopefully it won't cost me! Hope that I didn't put anyone to sleep but at the end of 24 years with no real answers I am feeling very desperate!!!! I am anxious to hear your all's feed back!!! Barbara
    For 23 years I have had positive testing and symptoms for Lupus. Last fall I came out of remission and had all the symptoms but all my test were negative for the first time!!!

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    Hi Barbara and welcome to our forum. I have been in remission for many years myself. However, I was just advised by my doctor last week that I have Fibromyalgia. Everything that I've read about FM states that it is not a disease, it is a chronic condition...I am not sure, exactly, what that means because the symptoms are so much like Lupus.
    Whatever it is, it is real..the pain is real...the fatigue is real...the migraines are real. I also have TMJD with my FM :? my doctor told me to prepare myself for the fact that I may be coming out of remission!
    You have been dealing with this disease for so many years, my heart goes out to you and to your bravery! You could probably teach all of us a lot about this disease!
    There are several foundations and institutions which are involved in trials for different aspects of LUPUS. Since I do not know where you are or what type of study you'd like to participate in, you can ask your search engine to locate Lupus Clinical Studies and perhaps find one near you. I did this and quite a few clinical studies came up. There were too many to list in this reply, best of Luck in your search.
    Please visit our forum often...we are here to help in any way that we can!

    Peace and Blessings
    Saysusie

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