Hello new here!
I have been fighting with my doctors for almost 28 years..well my mom fought with doctors until I turned 18, but after that I have been fighting with doctors for a diagnosis!
In 2001 I tested positive for Lupus, but my rhumy then refused to say I had lupus because I had no butterfly rash. Just last Wednesday I tested positive again for lupus, with one negative test a year ago.
I feel absolutely awful!
I ache everywhere, I am so tired that there are days I don't want to get out of bed, and I have to because of my three kids. I have chest pains, muscle aches, weird red marks on my legs, arms and stomach. I have had a headache that won't go away no matter what, been diagnosed with high blood pressure, anemia, and a host of other things including IBS.
I can't remember anything, I feel like I am going nuts! I am afraid my doctor is going to think I am a hypochondriac because things just seem to be coming faster than they can figure out what is wrong! All my blood work is normal except for the positive ANA.
My doctor said that the symptoms I have, and I have two pages worth, he says sounds like it is most certainly lupus. I have swollen lymph nodes above my left collar bone which was negative for cancer, but in my research on lupus I have seen that swollen lymph nodes is a symptom of lupus. I have the low grade fever that never gets over 99.5 and its constant, even after taking tylenol.
I just wanted to find a place where I knew I wouldn't feel alone anymore and hopefully you guys could give me ideas on how to get my doctors to listen to me!
Please help, I feel alone and like I am a few feet from the edge of a cliff!
Hi Jill1021 :lol:
You most certainly are not alone and everyone here will either understand how you feel or will have personal experience with how you feel. So, I want to welcome you and to let you know that we are here to help you in any way that we can and to hopefully make you feel a little less loney.
You ARE NOT a hypochondriac...all of your symptoms are real and absolutely can be symptoms of Lupus. Since I am not a doctor, I cannot say that you do have lupus, but it certainly sounds as if Lupus could be the underlying cause of your symptoms. It appears that your rheumatologist is not proficient in the criteria for diagnosisng lupus. There are many lupus patients who have never had the butterfly rash. That particular symptom is not mandatory in order to have a lupus diagnosis. I want to direct you to Lupus Erythematosis Symptoms on this site. There you will find a "sticky" post that explains the criteria for diagnosing Lupus. There are 11+ criteria needed and you need only to have 4 of those 11. It sounds as if you have more than the required 4.
May I suggest that you print that and take it with you to your next appointment with your doctor. Also, you can go to the Lupus Foundation Of America's website: www.lupus.org where there is a wealth of information about diagnosing Lupus, Lupus treatments, Lupus symptoms etc. Print up information that you feel is pertinent to you and take it with you also. If you educate yourself about Lupus and go to your doctor armed with information, you can insist that he/she take you seriously and begin appropriate treatment so that you can get some relief from some of your symptoms. It is very important that you become pro-active in your health care and that you be able to stand up for yourself and insist that your health care providers listen to you and take your seriously. The best way to do that is to become knowledegable about Lupus, know how it affects you, learn about its symptoms, its treatments and medications. We can help you with all of this and will never make you feel like it is all in your head!
I wish you the very best!
Peace and Blessings
Also, you can ask any question at all here and we will do everything within our power to find an answer for you
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need support, advice, information or just to vent or chat, we're all here for you!
I'm really sorry that you are going through such a difficult time :cry:, but please know that you are in my prayers and I hope that you begin to feel better soon and also that you get a diagnosis.
Saysusie is right, it doesn't sound like your Rheumatologist actually knows what the criteria for a Lupus diagnosis are, but it looks like she (Saysusie) has given you some good advice, as always!
Keep well and God bless!
I went back to the doctor today, because this headache won't let up, well I had an MRI on Thursday, and needless to say, it wasn't normal.
I got a big dose of steroids via injection in my butt, and start the pills tomorrow.
My legs are turning purple and splotchy. (if that is even a word)
I hurt so bad in the morning and at night, I wanna bawl myself to sleep, and most of the time I spend the time in my room in the dark in the basement, because lack of moving is what seems to make me feel better.
I get awful cramps in my legs, that wake me up, same with anxiety attacks they wake me up too, feels like I am having a heart attack!
I just feel so confused, lost and well bewildered, because these symptoms keep coming back then go away and come back, and most of the time I get told I have the flu, or something weird, but nothing to give me concrete answers!
I need to learn how to be pro-active in my care, because honestly I have put too much faith in my doctors, and let them pretty much dismiss my claims to pain and being just BLAH!
Maybe I should take my mom with me to an appointment lol because she would set em straight, even though I am 31 years old!
Thanks ladies for the welcome. I am sure I will post here often as symptoms and questions arise!
Jill, I am so sorry you are having such a hard time. I hope the steroid injection kicks in soon and makes you feel a little better. Did the doctor tell you what on the MRI was abnormal? That might give you some clues to what is going on.
Have any of your doctors ever mentioned the possibility of vasculitis? I ask because the weird red marks and purple splotches sound a lot like my skin when I had a bout of vasculitis (inflammation of the blood vessels). Lupus can cause inflammation almost anywhere in the body, and when that inflammation settles in the blood vessels, it can cause unusual blotching, spots, etc, as well as just feeling horrible all over. So this might be something to ask your doctor about.
The MRI they told me was abnormal due to swelling of the sinuses that the blood vessels set in? Not the actual sinuses that cause sinus infections I think thats what she said, my brain isn't working in other ways either the fog comes and goes and then I remember information!
I guess I should have mentioned, that at the age of four I was diagnosed with juvenile rhumatiod arthritis, but never have had an RH factor in my blood and my doctor when I was a child, said that he had thought it was a misdiagnoses.
When I was four my mom said I complained about the same things now, I hurt all over and the pain was so bad then, my dad was pushing me on my swing set and I just slumped over and passed out, and was rushed to a children's hospital here in Nebraska.
The tested me from everything to leukemia, and brain tumors and ended up with a diagnosis of arthirits. I fought with it growing up and after puberty it go so much worse when they said it would go away!
I have already had a complete hysterectomy at the age of 24, because my periods would cause all sorts of problems, aches, severe stomach pain, to the point my doctor accused me of just looking for pain pills until he removed my uterus and saw abnormal lesions on it. Three months later my ovaries died and I was back under the knife, to have them removed and I ALWAYS develop awful infections after surgery.
Sorry I keep venting or rambling..just adding info that might make you all understand what I have been going through.
Here is the place where you can vent and ramble as much as you need to! There are so many of us who, like you, are now realizing that we suffered from symptoms for many, many years before we were ever diagnosed. Also, like you, many of us were at first told that we had rheumatoid arthritis. Making a diagnosis of lupus is difficult and often takes months or even years for doctors to piece together the symptoms to make a diagnosis.
Also, one of the things that makes diagnosis difficult (and one of the common problems with this disease) is the fact that - like you said -the symptoms come and go; they get better and then they get worse!! It is, I know, maddening and frustrating. Also, the brain fog is a common theme for those of us with Lupus.
Yes, it is important that you become proactive in your health care for the reasons that I stated previously and also so that you will have a better understanding of what your doctors are saying to you when they are discussing the results of your tests. If you can, try to write down what they've told you or ask for copies of your test results so that you can research and find out exactly what the tests and the results mean. You can also come here with those questions and we will research the answers for you!
Please keep us advised of how you are doing and remember, You Are Not Alone!!!
Peace and Blessings