Hi all...my name's Jen. I'm from North California. So happy to meet you all here.
Can't really say that I have Lupus...my body says I do, but my blood tests say different. From all that I've read that's not very unusual. It is frustrating though.
Saw my doc yesterday after suffering through over two weeks of pain and fatigue. At first she wanted to tell me that I had a virus. Then I told her how long it's been going on and she stopped in her tracks and started ordering blood work. A lot of blood work. I can view my results online as they come back, so have spent all day looking at perfectly normal results. Most people would be very happy.
Don't get me wrong, I don't want to have this awful disease. But I don't want to go through months or years of wondering if it's all in my head, either.
My apologies for the vent after just signing up to be here...just needed to get that all out.
Hi and welcome. You’ll find this is a supportive community. One I am fairly new to myself. I’m sure you’ll get a lot of good feedback. My path to discovering I had lupus was a long one. I was being treated for individual symptoms, but no one even thought of the possibility I could have lupus until I was in ICU being read my last rights. I don’t say that to scare you, but to hopefully encourage you to hang in there and not give up and don’t settle for answers that don’t feel right. I’m glad your blood tests are looking good, but lupus is a very difficult disease to diagnose. There are also other illnesses that mimic the symptoms of lupus. I’m sorry I can’t offer you much more than encouragement to keep searching for an answer that feels right to you. For years I was told I had viruses, pneumonia, kidney infections, chronic fatigue, depression, you name it, before my lupus diagnosis. I hope you don’t have it. But, continue to seek support here as you are today. Best, Kim
Welcome, Jen. I don't know what all your symptoms are but you might want to look at info on fibromyalgia too. Many of us have that along with the lupus and other auto immune diseases. It can be horrendous too without the organ involvement and usually with chronic fatigue syndrome with it too. Best of luck!
Welcome. I live in California. How north are you? I live near Sacramento. It can be very frustrating trying to find out what's wrong. Especially when you feel awful and there's no name to it. Many of us have been in this same place. I was ill for several years before my docs actually took it seriously. Please be good to yourself and keep pushing for answers. They will turn up eventually.
You don't have to apologize for venting, this is the best place to feel free to do so. If your body is telling you do have Lupus, then I agree with Ann, start treating yourself as though you do. I went to lupuscheck.com and signed up and they gave me a helpful journal to track my symptoms and record them. It's a nice size journal to tuck in a purse to take with you to the doctor. I have learned more here about my illness than I have from any doctor so far. When I was first diagnosed at 49, I went to the library and checked out a book on lupus. Learn all you can, don't wait for a doctor to teach you.
for most of us, it takes years to get diagnosed because so many other illnesses have the same blood results. I've gone from it being a virus, to depression, to restless leg syndrome, to early perimenopause, etc. It wasn't until my blood pressure shot up dangerously high that all the symptoms came together with past history to be diagnosed with lupus sle. I'm still not sure that is lupus, so I am seeing another rheumy for a second opinion. Write down EVERYTHING and dates! Even if it occurs once and goes away. Tell the doctor EVERYTHING, even when you feel like a hypochondriac.
We are here for you to vent. Many of us waited years for a diagnosis. And, like you I truly hope that you don't have this disease. However, there are other's that have several symptoms that overlap with symptoms of lupus, such as Fibro and other UCTD's.
I, too, hope you find your answers soon. Until then, you are in charge of your health. I have had a lot of success by limiting my gluten-intake to almost none. It has helped my energy (some) and really helped my digestion. I've lost nearly 50 lbs and that has helped the joint and fatigue as it would for anyone not suffering with a disease.
Vitamins have been helpful as well.
I am not a doctor and certainly wouldn't suggest that this would be a fix-all. But before you get your diagnosis, you need to be proactive in your health care.
Hey Jen, I’m Mindy. I was one of the fortunate ones. My symptoms were so bad in 2012 that it finally got me to the point that I listened when a friend, a retired doctor, said something to me. “Mindy, if I didn’t know better, I would say you have lupus.” that seed of thought had me ignoring what my MD said, got a second opinion, then a third. When the third treated me from a non-American medicine view point, I got some where. She prescribed steroids because she was worried about my kidneys. No one ever mentioned my symptoms being linked to my kidneys. The steroids worked like magic! I went from walking around like a woman in her 80s to fairly mobile. I could eat! After weeks of dropping weight from not eating, I was suddenly eating again. But the meds were only for a few days to kick infections. When I went back in, I was back to square one. That’s when I asked for them to test for lupus. They pulled blood and did what they needed. Then I was sent to a rhemy. I love my rhemy. All that happened quickly. I didn’t wait for years like most of these wondful people. I got what I needed and was treated for what I have. Sure, I found out that Lupus was not my only passenger, but that’s okay. I know my rhemy and I working together can keep it mostly under controll.
Jen, take the advice of these wonder people. If you body says it is Lupus or like lupus, treat it for lupus. Stop eating gluten, give up tomatoes, ease up or give up dairy. Consider giving up meat too. Sounds drastic? How drastic will your symptoms be before you are willing to do anything to feel okay? Just okay! Not normal, not great, but just okay. That’s what we strive for.
Go to your library, ask Cor the big lupus book. If they don’t have it, request they order it. Start resting more. Ditch stress! If you can do things easier, do that.
Also, talk to us about your symptoms when you are ready. Remember, all not normal things can be a symptom. Even small things. I had mouth sores, which embarrassed me to talk about. It was lupus! Lol. There is so much that can happen, but somethings are not lupus. Tracking those and talking to us about it will help you to find out what is what.
Lots of love to you, Jen. We are here if you need an ear.
HiKim! Welcome aboard. Sorry I have not had a chance to welcome you.
Mindy
Kim said:
Hi and welcome. You'll find this is a supportive community. One I am fairly new to myself. I'm sure you'll get a lot of good feedback. My path to discovering I had lupus was a long one. I was being treated for individual symptoms, but no one even thought of the possibility I could have lupus until I was in ICU being read my last rights. I don't say that to scare you, but to hopefully encourage you to hang in there and not give up and don't settle for answers that don't feel right. I'm glad your blood tests are looking good, but lupus is a very difficult disease to diagnose. There are also other illnesses that mimic the symptoms of lupus. I'm sorry I can't offer you much more than encouragement to keep searching for an answer that feels right to you. For years I was told I had viruses, pneumonia, kidney infections, chronic fatigue, depression, you name it, before my lupus diagnosis. I hope you don't have it. But, continue to seek support here as you are today. Best, Kim
NICE TO MEET U JEN! I THINK WE ALL HAVE BEEN RIGHT THERE WONDERING THE SAME THINGS BEFORE DIAGNOSIS! THINK MOST OF US HAVE FELT LIKE IT WAS ALL IN OUR HEAD BECAUSE WE KEEP BEING TOLD NOTHING IS WRONG WIT US BY THE VERY HANDS WE PUT OUR LIVES IN. ANYHOW, WELCOME (: HANG IN THERE!!!!!
Mindy, thank you for your reply. That's wonderful that you were able to diagnosed so easily.
I'm hoping that when I see my dr again next week, she will be sending me to the rheumatologist. Just to get an answer of some sort would be wonderful.
Thank you, too, for the words of encouragement of letting my body take the lead here. If my body says it's Lupus, I'm willing to believe. Not like, just believe. It is odd to me that I really don't want to eat but know that I must. I am a type 2 diabetic, so going without food is just not an option. The queasy tummy doesn't want me to eat though. Diet 7up and gingerale are wonderful things.
Glutin free, no tomatoes, no dairy...OH MY! Who knew that so many things (of course it's the stuff I prefer) could worsen symptoms.
I will check on books about Lupus. Ditching stress would be lovely. Feels like more stress gets piled on daily. Resting would be nice also. I do have to work a full-time job...I some times work 45-48 hours a week. Getting a diagnosis would help with the job because then I could at least be able to get FMLA in place. I think they need more than "I feel crummy all the time" to approve it though. I was off work for 3 days this week because of the pain. I'll lose my job if this keeps up.
The kids are all grown up, but still needing they're mommy when I get home. LOL 2 months ago, my mom had to be placed in a nursing home. That probably, in some ways, reduced my stress but increased it in other ways.
We can be sure that I'll be whining on here again soon. Hoping to also find some ways to give encouragemnt too.
Jen
Mindy Wolff said:
Hey Jen, I'm Mindy. I was one of the fortunate ones. My symptoms were so bad in 2012 that it finally got me to the point that I listened when a friend, a retired doctor, said something to me. "Michindy, if I didn't know better, I would say you have lupus." that seed of thought had me ignoring what my MD said, got a second opinion, then a third. When the third treated me from a non-American medicine view point, I got some where. She prescribed steroids because she was worried about my kidneys. No one ever mentioned my symptoms being linked to my kidneys. The steroids worked like magic! I went from walking around like a woman in her 80s to fairly mobile. I could eat! After weeks of dropping weight from not eating, I was suddenly eating again. But the meds were only for a few days to kick infections. When I went back in, I was back to square one. That's when I asked for them to test for lupus. They pulled blood and did what they needed. Then I was sent to a rhemy. I love my rhemy. All that happened quickly. I didn't wait for years like most of these wondful people. I got what I needed and was treated for what I have. Sure, I found out that Lupus was not my only passenger, but that's okay. I know my rhemy and I working together can keep it mostly under controll. Jen, take the advice of these wonder people. If you body says it is Lupus or like lupus, treat it for lupus. Stop eating gluten, give up tomatoes, ease up or give up dairy. Consider giving up meat too. Sounds drastic? How drastic will your symptoms be before you are willing to do anything to feel okay? Just okay! Not normal, not great, but just okay. That's what we strive for. Go to your library, ask Cor the big lupus book. If they don't have it, request they order it. Start resting more. Ditch stress! If you can do things easier, do that.
Also, talk to us about your symptoms when you are ready. Remember, all not normal things can be a symptom. Even small things. I had mouth sores, which embarrassed me to talk about. It was lupus! Lol. There is so much that can happen, but somethings are not lupus. Tracking those and talking to us about it will help you to find out what is what.
Lots of love to you, Jen. We are here if you need an ear.
Thank you, Moniquecrader. Nice to know that we're all in the same boat...seems to be a really big boat, too! LOL
moniquecrader said:
NICE TO MEET U JEN! I THINK WE ALL HAVE BEEN RIGHT THERE WONDERING THE SAME THINGS BEFORE DIAGNOSIS! THINK MOST OF US HAVE FELT LIKE IT WAS ALL IN OUR HEAD BECAUSE WE KEEP BEING TOLD NOTHING IS WRONG WIT US BY THE VERY HANDS WE PUT OUR LIVES IN. ANYHOW, WELCOME (: HANG IN THERE!!!!!
DeAnne, thank you for allowing me to vent. I get tired of telling my co-workers what's going on with me knowing that they don't really understand but want to be supportive all the same.
Funny, even before this "flare" or whatever, I was fatigued all the time and wondering if maybe glutin is the problem. I've been thinking about giving it up as a test. But, oh gosh, I love my bread! Looks like I will have to follow thru on that plan.
Jen whathappensinvegas said:
Jen,
We are here for you to vent. Many of us waited years for a diagnosis. And, like you I truly hope that you don't have this disease. However, there are other's that have several symptoms that overlap with symptoms of lupus, such as Fibro and other UCTD's.
I, too, hope you find your answers soon. Until then, you are in charge of your health. I have had a lot of success by limiting my gluten-intake to almost none. It has helped my energy (some) and really helped my digestion. I've lost nearly 50 lbs and that has helped the joint and fatigue as it would for anyone not suffering with a disease.
Vitamins have been helpful as well.
I am not a doctor and certainly wouldn't suggest that this would be a fix-all. But before you get your diagnosis, you need to be proactive in your health care.
Hi Trisha, thank you for the advice about lupuscheck.com. I will check that out. I've been thinking a journal of some sort would be a good idea for recording any new and ongoing symptoms. Trisha said:
Hi Jen,
You don't have to apologize for venting, this is the best place to feel free to do so. If your body is telling you do have Lupus, then I agree with Ann, start treating yourself as though you do. I went to lupuscheck.com and signed up and they gave me a helpful journal to track my symptoms and record them. It's a nice size journal to tuck in a purse to take with you to the doctor. I have learned more here about my illness than I have from any doctor so far. When I was first diagnosed at 49, I went to the library and checked out a book on lupus. Learn all you can, don't wait for a doctor to teach you.
Hi heymj,...I'm near Sac in a little bitty town called Wilton (it's between Elk Grove & Galt). Most people have never heard of it.
I'm going to start taking notes on this website so I can prove to somebody that I'm not crazy and so that I can start learning all that I can about living with this illness. Just want to feel moderately "normal" again. This last three weeks has been tough to get through. heymj said:
Hi Jen,
Welcome. I live in California. How north are you? I live near Sacramento. It can be very frustrating trying to find out what's wrong. Especially when you feel awful and there's no name to it. Many of us have been in this same place. I was ill for several years before my docs actually took it seriously. Please be good to yourself and keep pushing for answers. They will turn up eventually.
Oh how much I can relate to your story, Jen! I've been hurting for two or three years, and it only got bad enough last year for me to put my foot down. I'd complained to my normal doc about it, but when the blood tests came back negative, he dismissed me as just being that way (painful and tired). It was no longer okay, and I bypassed him and got a rheumy instead.
Rheumy has done the same blood tests, which of course have still come back negative. HOWEVER, he reads me much better and understands what I'm saying. I had my fifth or sixth appointment with him today. He was handling and massaging my hands, and at one point I winced. He noticed and acknowledged that I hurt, despite the lack of swelling or heat. It's such a relief to be believed!
I'm feeling faintly frustrated in one way, because I think my rheumy is less concerned with pegging the name of what's wrong.... but in a way it's good, cause he's preferring to actually address my pain and comfort instead. Apparently he's treating me as an RA patient with negative bloodwork, though he won't come out and say that's what's wrong.
Though I know it's pretty safe, I'm anxious now about the new drug he's gonna put me on. I've been taking prednisone, but now I'll be taking methotrexate as well. I'm hopeful that it'll take me further toward 'normal', like you are saying you are longing to be. I'm a lot closer to that now than I was before, and actually that has helped me to manage and notice my symptoms better. So hang in there, find a doc you like, and be sure to come here for support! Everyone is fantastic about helping each other here.
Talencia, best of luck to you with the new med. I hope it works out for you.
I think I could handle the being in pain if the fatigue would end. Guess we don’t get to choose the acceptable syntoms though. Lol
What I discovered, for me anyway, was that a great deal of my fatigue was from being in pain all the time. As the pain has reduced, I've been sleeping better and waking more refreshed in the mornings. I can still easily wear myself out, but at least I'm not exhausted all the time anymore.