View Full Version : Lupus? after 5 years of illness?
I am Laura, I am 45 years young.
About 5 years ago I started having mysterious symptoms, horrible body aches, and joint pain,(the pain was so bad that I would cry sometimes) high nighttime fever 102-103, shaking chills, some stomach problems, for 2-3 days, when the fever would finally break, I was exhausted and I would have very dark colored urine, (sorry for the bluntness, just looking looking for help by saying what I observed).
The whole time in between episodes I ran a low grade fever. 10-14 days later the same cycle would repeat itself.
I went to the doc after the 3 episode, was told it was virus,
went again after the 6th one, ran a bunch of tests and x rays, said I had pneumonia, put me on an antibiotic,3 days later ct scan revealed no pneumonia, but again continued the fever, feel horrid cycle now they stretched to every 3-4 weeks.
Then they thought I had endocarditis (heart infection) turn out not to be that By this time I had sick for 6 months.
Sent me to rhumtologist..sent me to infectious disease..sent me to gastrologist. Now the episodes were not as high in fever and only about every 6 weeks. Still very tired and in a lot of pain.This about 1 year after first illness. Talked about lupus early on but I guess none of the blood tests concluded that.
I was also anemic enough to receive iron injections for 4 months, Eventually I stopped going to the docs,, slowly things settled down,..I would still get sick , but now it was low grade fever, stomach distress, lots of pain and fatigue.lasting anywhere from 3-8 days. Coming anywhere between every 3 weeks to every 3 months.
This has continued on, had a few colds had shingles, have had ear infections so I would still see my family doc, he would ask about the fevers and I would say ya I still get them..but we stopped pursuing a diagnosis.
This past January, had a bit of stress, Hubby had cancer, hes doing ok, all done with chemo and every things going good.. But Once again I am sick, only this time lasting for 4 weeks, New symptom. Swollen ankles and puffy face, and Mouth sores, not really painful though, lots of stomach distress, so I thought I am tired of the pain and just nowt feeling good went back to my Doc and he said Humm sounds like lupus..after all this time. He said sometimes mild lupus is hard to detect. He is running a bunch of blood tests..
So I really do not know anything yet..I am sad...I am tired and I want to know whats wrong with me..Other than no rash, I see myself in alot of the reading about lupus...I look back over the years to the way I felt as a young adult and can see patterns of illness then, but I always hated to complain...Does this sound like anything to to you?? Does this sound like I may have lupus??
05-15-2009, 09:45 PM
welcome to the group, there will always be someone around who can answer questions, or just listen while you vent.
lupus is such a difficult disease. There are many auto immune diseases, and often these diseases overlap one another.
While you are waiting to see the dr. about your blood work, i suggest that you start making a list of symptoms. If you read some of the sticky's located at the top of each section on this forum, you will find many symptoms, plus there are several threads where we have addressed the different things that people experience.
remember that symptoms are intermittent, they come and go, and they change from one place to another. When you are making your list, think back to any of the symptoms that you might have experienced.
good luck, glad you are here, hope we can help.
I have been reading a lot of the posts, whether or not this lupus or a combo of illness, I am sad, I have been in pain for so long, back to young adulthood early 20's.
I did not tell ant one of the constant pain,I thought that people would think I was a hypochondriac, because there was always something that hurt, maybe not always I only looked for help for the migraines, which have always been so severe.
Maybe I should have looked for help sooner, love the internet.
05-16-2009, 08:49 AM
I know what you mean. I hurt every day, but seldom reveal this to my family and friends. I too feel like i am just a whiner when i honestly tell about my pain....i hurt every day, sometimes it is bearable, and sometimes it is not.
Thank goodness for this forum....here we can talk all day about our pain, and sympathetic ears are listening, we don't just get blank stares of frustration from people who want to help but don't know what to do. Everyone here knows that there is nothing that anyone can do, we just have to deal with it. How comforting it is to have each other.
05-16-2009, 09:20 AM
First of all, I am sorry, that you are feeling so bad right now. It sure sounds like lupus to me, but alot of us had to wait a long time to get a diagnosis. My main complaint has always been joint pain, along with several other issues. I am in pain every day, just some days are a little better than others.
Btw, I have Lupus, RA, Sicca and Fibro. I also had shingles in January.
05-16-2009, 09:58 AM
Hello and welcome.Hope you get a diagnosis soon my friend.I too am trying to find out for sure what is wrong with me too.You hang in there.This is a fab place to find out everything you need to know about Lupus and other ailments too.We are all friendly and sometimes have fun too in the arcade and in the social groups.You ask us whatever ...we will all try and help you.
05-17-2009, 01:11 PM
I too hope you get a dignosis soon to. Many of your symptoms sound like lupus. I would definately get time to continue to check into it.
I am now 30 , but was diagnosed when I was 11. THey thought I had mono due to being tired all the time and having swollen eyes and swollen lymph nodes. Then they thought it might be leukemia so I had to go through a bone marrow biopsy. After that came back negative they figured I had some kind of autoimmune disease but they weren't sure. Then finally a couple months later I had to be hospitalized because I couldn't get off the couch I was so tired and I had swelling in my abdomen, around my heart and in my lungs. I was hospitalized for 9 days. They funny thing is one helpful dignosing factor was the sunlight was coming in my room and gave me a wonderful butterfly rash across my face. Then a year later I developed nephritis and was started on cytoxan (chemo) treatments over the next 5 years. Finally after the 5 years I went into remission and was there for 9 years until I started getting sick again. About a year after getting married, working night shift, and stressing about my father going to Iraq and all the girls in the family having babies before me I was trown into a flare. I battled that for a couple of years, finally had a second kidney biopsy and was on chemo again and bounced back into remission. I have been hanging in there but the last 8 months have been a downward spiral. I now have muscle pain all over my body but concentrated in my back and upper arms and joint pain. I never had joint pain until my last flare a few years ago. I too have had ankle swelling.
I suggest that you get a second opinion from another rheumatologist and see what they can tell you. Get a thrid opinion if you have too!! Just know there is a dignosis out there for your symptoms and you just may need to see more doctors then one to get it!
keep us posted!
05-17-2009, 03:26 PM
Welcome! You have come to the right place to vent and share. No one will judge you here. I am sorry you don't have a name to what has been making you sick but I hope you find out soon. Sorry you have gone through such a tough year with your husband as I know that can't be easy to deal with along with your symptons. Again welcome and I hope you find the answers you need to move forward with being healthy!
05-18-2009, 09:18 AM
Just wanted to pop in to add my welcome to those you've already received. What you are going through is so familiar to many of us. I call it the "diagnosis merry-go-round" as doctors are always baffled, then contradictory, then loathe to give us a concrete answer. But, they are not entirely to blame, as has been said, auto-immune diseases are notoriously difficult to pin down and/or to diagnose. These diseases develop slowly, they mimic one another (overlapping symptoms), blood test results change and/or are inconclusive, and the illnesses themselves change (relapse/remission).
For many of us, it took years before we got a definite diagnosis. Once we did, we looked back on our lives and realized that we had been suffering from the illness for many, many years before we were diagnosed. So, you are not alone!
Please come to us if you have any questions, need to vent, or just want to be amongst people who understand and who care. We are here to help you in any way that we can! I hope that you get some answers soon.
Peace and Blessings
05-18-2009, 10:08 AM
Wow, I HAD to chime in on this one. What you are describing is exactly how my disease started back in my mid 20's (I'm 44 now). I'd get so sickly and so tired....I felt like I had mono. I'd come home from work and go to bed. I had night sweats and my eyes would be sensitive to the sun. Aches. The doctors...oh the doctors. You know, I never blame doctors for not being able to cure me or even to diagnose me...but dang it, don't judge me. Believe in me.
Well, they would call me the "healthiest sick person" that they ever met after running their tests. It was awful. Then, after a several weeks, I'd pop out of it enough to say I was better, but never fully myself. About six months later, another episode. It got progressively worse (these episodes) when I finally ended up in the hospital with 105 degree temp. Oddliy, they said it was pnemonia and they gave me antibiotics. I'd bounce back and back to work. Six months later, same thing. This time I toughed it out at home. Finally six months later, a year after my first major attack and 5 years from when I first got sick feeling, I went to the hospital, but this time they found protein and blood in my urine. Admitted me as my kidney's were failing. Did a biopsy and said I had "vasculitis". 10 years later they would change that to Lupus.
There is a lot of pain (emotionally and physcially) in my brief explanation, and I don't want to minimize what I went through. I got treated and really got to feeling great. I've had a set-back recently, and going through much of the same thing. Some tests off, some not. What to do with me is the main question. Diagnosing Lupus is a combination of some test and the elimination of various diseases that could all present like Lupus. The key though, with the ankles swelling, eyes swelling, temp, dark urine, etc., is keep an eye on this disease because you can prevent damage to the Kidneys if you intervene early enough and what you describe is so familiar.
I'm sure some of the blood he sent is to check for your ANA (if it's positive) and your ANTI DNA and compliment (Rheumatologist tests). This should tell a tale. If not, I'd consider a visit with a Nephrologist as well. I'm sure one of the first drugs they would try would be Plaquenil if they feel it's lupus. It is fairly benign (like my Rheumo says) especially compared to the major Lupus drugs.
Feel free to write anytime to any of us, including me. Keep us posted. This is a great group of people....
(P.S. You'll always know me by my monkey's. You see, the represent my feelings on doctors...)
Thank you so much, you are all so kind, I find a lot of validation in what I hear, some of the tests have come back, nurse called this morning and said so far all are normal...she is mailing me out a copy, but some need to still come back. Larz, I am in Minnesota too, Just North of the twin cities, any Docs you can recommend would be appreciated.
05-18-2009, 12:10 PM
I too have had the run aroung diagnostic stuff and I am still searching for answers. For years I was told i had Crohn's. I did the immune suppressant and felt better but not great then I got the Remicade for 4-5 weeks out of 8 I would be almost symptom free and had my life back but last year I had to go to a new GI they took that away from me and I have gone down hill since then. I have to fight for what little relief I can get. I am like you I am tired, hurt and nothing seems to be working these days. - All have to say is don't give you and I both deserve and answer! Your not crazy, nuts but dealing with a real problem. Hang in there and I hope you find answers sooner than later.
Debbi - B
PS I love Minnisota ! I was there with my family we spent three days at KOA St Paul I believe, Cabelas and Mall of America who could go wrong LOL!! We drove from Oregon spent two+ weeks on the road with my family I needed a vacation from my vacation and I crashed hard after words but the memories will last forever! Take care.
05-18-2009, 01:26 PM
Hi Lala!!!! So sorry you are having to deal with this:no: It sure sounds like Lupus or at least SOME type of autoimmune illness! DONT let the blood tests be your ONLY answer to your questions. From my experience, and others when you read other threads and posts, our blood work can be ALL OVER THE PLACE with this illness. Alot of drs just want to rely on that ONLY and thats not how this disease works and any GOOD dr KNOWS that. My blood has been positive for this negative for that and then next time its negative for this and positive for that! :wacko: I have arthritis, i dont have arthrtis, i have lupus, i dont have lupus, its draining but you have to KEEP PUSHING AHEAD! We are HERE FOR YOU whenever You NEED to vent!!! Or just ask questions! GOOD LUCK!!!:cute:
Thank you so much I was very discouraged today when they said that most of the blood work is normal, Yesterday I went outside for less than an hour maybe 45 minutes, mostly in the shade, today my face is red in the area I hear called a butterfly, but it doesn't really look like a rash, its red and i feel flushed, of course I am running my usual low grade fever. When I looked up lupus rash on google, i saw some intense photos, but is that how it looks? or can it be lighter like a mild sun burn? can you tell me what it looks like for you all:skeptical:?
05-18-2009, 02:28 PM
Yeah, i get the butterfly rash on my face as well Lala. Mines not bumpy or itchy either. I just look flushed as well and a low grade fever too. Its different from person to person. I just this year started getting the rash along with chronic dry eye which can also cause a red itchy rash around my eyes. Always something new! :wacko:
All of my blood work has come back now, its all normal, but I am not feeling normal, I have been trying to mange things on my own for so long now, that I am not sure what symptoms are ok to manage on my own and when to seek medical help.
The pain is not too bad today, just my knee hurts, not too bad on body aches, I only took ibuprofen 2X,.
I am a swollen, in hands and feet and face..I have always just taken water pills when this happens, is that okay to do?
plus obviously I CAN'T sleep..how do you know when to go to the doc right away?
I have an appointment with my gp next week, I figured I would keep track of my symptoms till then and show him the list.
I am so confused, I wish the blood work would have shown something, then I could at least know what to do next..A lot of you seem sicker than I am, so I know that it should seem obvious, when to go in, but its not..
05-20-2009, 05:09 AM
good morning lala,
your question is the million dollar question that we all struggle with. I don't know when to go to the dr.....i usually just fight it out myself, because all of the tests, visits, etc always come back "it must be your lupus" because the tests come back normal. My rule of thumb is i go to the dr. if i am concerned about my heart or kidneys....usually the dr. visit is just to reassure myself, because they can never do anything for me.
if i am in a really bad flare that persists for weeks, i go to my rheumy and she gives me a medrol injection which gives me some immediate relief.
i don't know about water pills...i have not heard any reference to them here. If you are experiencing swelling in feet and legs, you should go to a nephrologist and have them check your kidneys. I always associate swelling to the area that the little antibodies are presently attacking. It is like i can feel the little confused bastards chomping down on my body.
as far as sleeping, there is a thread (i will look for it), where different members discuss the different meds that they use to sleep. It appears that Benedryl is one of the most frequently used meds for sleep. I will find the thread, and respond to it so that it is brought back into the highlighted threads.
I am sure that more membrs be along to help you with these issues.