It sounds like we have been down the same road. I hope things go better for you soon.
So, about two years ago, maybe it was only one year ago, Ive lost track, I found this site, and posted that I thought I might have lupus, but, hadn't been diagnosed because I was tired of being told that there was nothing wrong with me. I planned to see my doctor, and then, chickened out for no better reason than because of the last time I saw him and he said what is wrong now> like I enjoy going to the doctor.
Anyway, finally, I went to him yesterday and brought a two page documentation, broken into categories, detailing my medical history and symptoms. I told his nurse I was seeing him to be tested for lupus, plain and simple. Still, he came in and said, so do you have lupus, and I said I don't know, that's why Im here. It was a big duh moment, but, I am so tired of feeling this way and not knowing why that it just didn't matter anymore what he said. I pay him to take care of my body with whatever medical science is necessary, he is also a homeopath, so I am hoping to get some more natural recommendations. He really isnt a bad doctor, he just never thought about lupus, like most of them dont, and here I was
coming into his office with one thing after another. He was frustrated that I had so many problems and of course, he never put two and two together. Maybe now that the show HOUSE is addressing it, the medical community will at least entertain it as a possibility.
After discussing only breifly the list I gave him, he went ahead and ordered 7 vials of blood to be drawn, to test for lupus yes, and to test for a litany of other possibilities. So, I guess I will finally inch closer to some kind of answer, even though I fully expect that there won't be anything conclusive for a while. That is just my life. It's like I am an appliance that only works when the repairman comes out to look at it.
I really tried to just ignore my symptoms, hoping they must be right and that nothing is really wrong with me. Well, it's all so much worse now that I refuse to pretend anymore and I am demanding they run every test that is available to give me some kind of answer. I have to know what is wrong with me.
Just going a little crazy here and venting, sorry.
My husband knows what I think it is, and we just lived as though we were dealing with lupus. Still, he has done zero research and just listens to me when I tell him things, but, doesn't seem to really grasp how I am feeling. He becomes frustrated when I am too tired for intimacy, or if I felt great early in the evening, but, when it comes time for bed, I just want to sleep. I feel guilty because I am such a downer. All I want to do is be normal. I want to dance madly, I want to run and play with my kids. My daughter who is now 16, when she was about 11 or 12 complained that I never play with her, I don't come outside and play games like other moms do. I wanted to, but, I just couldn't.
I know when this all really started. I always had some symptoms, but, the big, first flare was in 1982, and I have suffered ever since, about 26 years now. Please, oh please, let me finally have an answer.
It sounds like we have been down the same road. I hope things go better for you soon.
I hope that you are able to find a doc who can give you some answers. I know how tiring and awful to go from doc to doc trying to get someone to listen.
BTW what are your symptoms?
I created a file on my computer to detail my history. I'll attach it. That's so much easier than trying to retype it.
Cardiac- Childhood - heart arrhythmias that I thought everyone had, it felt like heart hiccups
Adult- continued arrhythmias, unexplained, worsened in my 7th pregnancy,. ekg showed PVC's, follow up with cardiologist showed mitral valve prolapse with regurgitation and a heart murmur, recommendation echocardiogram every 6 months, nitro glycerin pills, and antibiotics for dental work etc. After a few years, the murmur lessened, and it was determined that nothing was wrong. arrhythmias continued. Over the past three years, the arrhythmias have ebbed and flowed, on several occasions, and becoming more frequent, they have gone from an annoyance to painful, almost crushing pain radiating into my neck, jaw and down my arm. Usually on my right side, but, on a few occasions on my left. I became sweaty, nauseous, and weak. At least twice I was certain it was a heart attack, and nearly called for an ambulance, but, didn't want to be told yet again that there was nothing wrong. I was once diagnosed with possible inflammation of the outer heart lining, do not remember what that was called.
Blood clots & vessel inflammation etc- At about the same time as the arrythmias became worse, I also developed chronic problems with blood clots, usually in my right arm, but, several times in my right leg. I still have an area in my right thigh that, frequently, becomes hot to the touch, feels firm and swollen, and feels as though the blood circulation is cut off. It lasts for days before slowly going away. In the past year, I have had problems with that in all four arms and legs, more so lately on the left side, feeling as if there was a rubber band at the top cutting off circulation. It will start out as a pins and needles feeling and then become more and more painful, slowly subsiding over days, becoming cold during the worst of it and not being able to warm the area except with direct heat. Years ago, don't recall how long ago, I was in the er for chest pain, and a SED rate test was done, returning with I believe a 90 or 98 or something like that, it was at least 90, and I was told that was extremely elevated. When I came in for a follow up visit, I was referred to a rheumatologist, who I never went to , as I was again getting the impression that my chest pains were being dismissed as imaginary or exaggerated, and did not want to make a trip to Salt Lake just to be told that. As a child I had chronic nosebleeds that were never checked out. My nose would just start to bleed profusely for no reason. It went on for most of my childhood, and happened several times a week all year round. I have always struggled with mild anemia, more seriously during pregnancies. Diagnosed with Phlebitis several years ago.
In 1983 I had a months long period of unexplained illnesses and rashes. I developed extremely painful joints, to the point of immobility, and, rashes on nearly every part of my body. I broke out in hives several times. One rash that was particularly bad was across the bridge of my nose and on both cheeks. It was red, raised, and sore, and took a long time to slowly go away. I have a second one, similar but not as large that is still on the back of my scalp, that still causes me problems with becoming sore and itchy, and then crusts over. I also had a serious rash on my lower leg and inner thigh. I developed a bladder infection, yeast infection, throat infection, migraine headaches, an ear infection, and conjunctivitis. All at the same time. I was bedridden for a week with fever and chills and generally unwell. My doctor at the time prescribed feldene for what he determined must be rheumatoid arthritis, as he believed I must have suffered rheumatic fever, and creams and antibiotics for the rashes and infections. He said I was going through some kind of auto immune crisis that was probably brought on by the stress of having gone through a messy divorce and then becoming engaged and this must have given me rheumatic fever which caused all these problems. No further tests were ordered because he believed the problems would correct themselves over time. Over those approx 6 months that I experienced these outbreaks the rashes came and went, and the infections subsided, some recurring and some increasing in intensity. The arthritic problems persist to date, as does at least one rash on my lower scalp.
Joints- The arthritis continues to this day, and has grown worse again in the past few years, sometimes incapacitating the affected area at the time, usually my shoulders and hands. In the mornings I am always so stiff that I can barely move and it takes a while to walk normally. This can happen if I sit or lie down for a little while. I cannot touch or handle cold things, not even from the freezer to the counter without pain. In washing vegetables under cold water, I get such pain in my fingers that I have to stop and run the warm water to stop the pain. I cannot make meatloaf with my bare hands. It feels like a knife going through my joints.
Cysts etc- I have a cyst on my only ovary,(had an ectopic pregnancy in 1981) and in most parts of my body, especially my neck, underarms, breasts, and temples. They swell when I am sick, as do my throat glands, and sometimes are visible. I can feel lumps under my arms and in my neck that are very slowly getting more palpable. In about 1992 I had one removed from my neck as it was so visible. Tests showed it was benign. It is difficult for me to do a breast self exam because I have so many lumps and cysts.
Pregnancy- I have never carried a baby to term. Have always had problems with unexplained premature births.
Eyes- my eyes have developed, over the past five years, a chronic soreness. It comes on without any explainable cause. They suddenly start to itch and water, and then start to burn. Drops do not help at all. When I am driving, and it happens, I have to pull over because I can't keep my eyes open, it burns so badly. It is difficult to drive at night due to the headlights nearly blinding me. My vision has gotten worse.
Pulmonary- I have, for as long as I can remember, had a cough that has always just been there. I smoked when I was a teenager and attributed it to that, but, I am now 48 years old, and wouldn’t think it was still from smoking over 28 years ago. I can't laugh without coughing, and sometimes gag. The harder I laugh the harder I cough. If my heart takes that extra beat or two, or three, I feel the fluid build in my upper respiratory and cough. It's automatic. I feel fluid, but, have not checked to see what color it is. I cough if I take a deep breath and it hurts a bit. Exercising is difficult as I have a hard time with the deep breathing. Leaving a warm environment and going to a cool or cold environment makes my throat have the sensation that I am going to gag. I cough and almost vomit. It takes several minutes of this before I adjust and am fine again. It is a normal feeling for me to feel like I have fluid in my lungs. I have suffered multiple bouts of pneumonia, most of which took more than one type of antibiotic and over two months before it slowly cleared up. Also been diagnosed with pleural pain possible musculoskeletal.
Other- I get up to go to the bathroom several times at night. Often I will go through a spell of days where my urine smells extremely sour. I have had several kidney and bladder infections in the past year. I have intermittent pain in my kidneys. My appetite has decreased dramatically. Most of which I have attributed to aging, but, I am still only 48. My fingernails are brittle and will peel and crack, often right down the middle. I itch all over most of the time no matter how much lotion I use. I have a rash that shows up when I am in the sun for very long it looks like my skin is mottled and takes hours to go away. I can always tell when the temperature drops below 72 degrees because my nose, eyes, and fingers get very cold, palpably cold. I cannot sleep at a temp of less than 71. A few years ago I was in a car accident and the x-rays revealed scoliosis in my lower back that I never knew I had. I still get migraine headaches
Lethargy- I have always struggled with lethargy, but attributed it to chronic anemia. The past few years this has increased. No matter how much I sleep, or how much iron I take, or eat, I still fall asleep sitting in a chair, I have to be careful about driving for too long. I do not enjoy my life because I am always exhausted. I also have difficulty sleeping soundly, due to painful joints, the pins and needles sensations and then the slow or practically no circulation that becomes painful and causes my hands and feet to be extremely cold. So, unknown how much that is a factor.
Lupus was suggested to me several years ago, and I dismissed it because I kept being told that nothing was wrong with me. So, after the past year of getting so much worse, I looked at it more seriously, read up on it, and now want to be tested.
Additional- have had bouts of losing large amounts of hair, it just falls out , sometimes by the fistful. My hair is very brittle. I have had irregular periods for the past year but attributed it to the possibility that I am going thru premenopause. I have a much decreased appetite, and then become nauseous while Im eating. After walking , for instance shopping at the mall, my feet feel like I am walking on rocks and I am stiff all over.
So, there ya have it.
I'm so sorry you've been dealing with this for so long. I think my symptoms started a mere two years ago...I can't imagine dealing with this for as long as you have!
I hope you get the correct tests done. Please try to see a rheumatologist. They are specialists and will be better able to piece together your puzzle and determine if it is lupus or another autoimmune disease. Drs who don't specialize in autoimmune diseases just don't put everything together and see individual pieces, when really, it is all part of the same problem!
Best of luck to you.....
Teri, luvwine is right - a rheumatologist (someone who really understands autoimmune disorders) is going to be better equipped to help you figure out all of these diverse symptoms. You've had so much to deal with - I hope you can get answers. I think a diagnosis - putting a 'name' to it - is a relief after so long a struggle to understand all that's gone wrong. There are a lot of caring folks on this forum, and I know they'll try their best to be supportive. Glad you found us!
"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."
Did you ever get a diagnosis on your condition? My sister has similiar symtoms and has not yet been diagnosed so I was just curious. I HOPE you were able to get to the bottom of things and still get a good report.
I just wanted to reply to offer support. As you probably know from reading the forums here, it sometimes takes YEARS to get a diagnosis. It is incredibly frustrating, I know. I also know that the symptoms seem overwhelming at times..
It is very important that you find a physician you trust. This can make an incredible difference in how you feel. I know for me, it was important to find a doctor who did not think I was a hypochondriac or that I was crazy. Once I found the right physician, my emotions and mental focus changed from how bad I felt (with the laundry list of symptoms) to how I could feel well again. Which is not to say that I feel well all of the time. But at least now, I believe I have the opportunity to be as well as I can be. Finding the right physician has made that difference for me. I would encourage you to continue your search.
As for your family understanding what you are going through, recognize that unless they've walked a mile in your shoes, they probably can't fully comprehend the fatigue, the joint pain, etc. Remember, however, that they do love you and they do want to be supportive. Sometimes, they just don't know how to do this and very often, they are frightened and concerned for your health, so they don't always respond in the way you think they should. I think you've taken a great step coming back here for support. Let this place fill that need in your heart for understanding, and let your family love you in whatever way they can. This will give you and them a level of peace you may have been missing.
I did not mean to preach at you here. It's just that I've been there and I understand.
I wish you well.
Let me join in the chorus of voices encouraging you to make an appointment and keep it - with a rheumatologist. If you see one that makes you feel like a hypochondriac, go to another. Your list of problems is serious and should not be dismissed. Obviously, your body is saying that something is wrong.
Don't think that seeing someone is just to get a diagnosis, either. As others have said, many people go for years waiting for a diagnosis (which I realize you have already done), but the important factor here is that you get some treatment. The symptoms indicate something is wrong, and you could get further sick just by not being treated. It is really important that someone take you very seriously and work with you to attack some (if not all) of those complaints.
As for your husband: well, I went through the same thing. My husband loves to surf the net, and I was really hurt that he never looked up Lupus or showed that he had real concern for my problems. Finally, it dawned on me that the problem was that he was in denial. He loved the active, healthy person that I had been (not every day, but most of the time), and just did not want to let that go. I don't know what it will take for him to break through for you, but with mine, it was a frank discussion about what stress does for a person with Lupus, and how his lack of support was very, very stressful to me. Might be worth a try to tell yours this.
My prayers are with you, Teresa. You have endured so much. I hope you are able to get help in the very near future. Please let us know how things go for you.
It's been two years since I put pursuing a diagnosis aside, so, no I have no new answers, just new symptoms. We're still struggling financially, and I can't figure out if this new health care reform bill will help or not. We do have insurance, but, it's not very good, and basically covers nothing. So, life goes on for now. I have a new doctor, but, am considering going back to the only other one that really seemed to get it. Maybe I'm wrong and he was pacifying my request for a rheumy referral, but, at least he didn't tell me I definitely don't have lupus based on a single ANA result, irregardless of all my other tests and symptoms over the years.
I think I'll just make a phone call to see if my referral is still good or if I have to get another one, since I never used the first one.