Thank you for answering & I hope your prolonged flare eases off & you feel better soon~
Steinfadt1 said:
Yes to feeling like flu and marathon. Yes to dry eyeballs. Yes to early menopause. Symptoms pretty much daily. Flares are on top of that... I seem to be in a prolonged flare. My flares are weeks or months long.
Well I was diagnosed last month with sle. Then they sent me to another rheumatologist who in less than 5 minutes said he did not believe I had I it. even tho all my blood work came back pretty much positive for it, he said he didn't believe it. I wrote down all the symptoms I have had over the last 5 years, and he said it looked like I went to a lupus site and just started writing down symptoms. he did not believe that I actually have had all the symptoms I wrote down. I went to my regular doctor who verified all the symptoms that I had written, but he said that didn't matter since he didn't see them himself. he repeated my blood work and again it came back positive, and he said he still didn't believe it. he said he thinks I need an anti depressive. so I guess I just have to try and manage my symptoms myself, as I don't know what else to do.
Deenie,
Thank you & I am sorry you too are going through your own discomfort. Crazy how 1 yr passed without a phone call huh? The rest of my labs should be back this week, hoping to have more answers then. If still in the air, then I will for sure have my mysterious rash biopsied. I found yours on here & mine is not that widespread. I get it either on my sides, right above my hips & sometimes towards my lower back. It really looks like ring worm, but I know it is not due to it not responding to ring worm meds or hydro cortisone, these make it worse & irritates the area more.
I know it's not from thyroid disease because I have no thyroid, ha ha :) I had thyroid cancer 13 yrs ago & had a total thyroidectomy.
Again thank you & hope you feel well :)
Dewing3569 said:
Beaker
I am sorry you are going through all of this. And i am sorry that your first ANA was positive and no one told you, how ever just having a positive ANA doesn't mean it is lupus.
Please have the ring worm rash biopsied. But yes the lupus rash can look like that and you can also get a rash looking like that from thyroid Disease as well. That is what my tumid lupus rash started as on my left upper arm, in fact I thought it was ring worm! I posted pictures of my rashes on my LWL page if you would like to have a look for yourself. By having the rash biopsied by a dermatologist it can help with the dx of what is maybe going on.
I as have a lot of hip pain. Sometime I feel like my legs are not communication with my Brain with is causing them not to work right! Lol! I too have osteo in all my joints and received injections. I have negative blood work for SLE, but I continue to have all the symptoms. I was dx with Cutaneous lupus first and then a few years later with SLE.
Like someone else said above about your issues, it could be a lot of different things. Stay the course, be positive and see what happens with your Doctor.
Best of Luck with your journey! I am thinking positive for you as well. Whatever you do please stay out of the sun until this is figured out........
Deenie
Lupies, ha ha, I love your attitude :)
I live in South Carolina & it is storm country here, ouch!! BUT, now it is aching in the hot summer rain this year, never did that before, just cold weather sometimes. Could just be arthritis & not Lupus.
Thanks & take care~
bern said:
Hi Beaker,
As you have read...most of us lupies have the flu like symptoms and dry eyeballs. The achy knee and legs are so hurtful that I just deal with the pain everyday. I guess you would say we have to go above our selves to tolerate the pain. ( I hope you all understood that )...that is the only way I can describe it. You will see that the storms will really send you over the edge. Recently I was going to move to Florida ( I live in Nevada ) but I talked to the group, that was the wisest decision I have made. I still live in Nevada and will for a long time, I do feel much better here. We have alot of sunny days thank goodness. Read some of the old archives alot of good information. We are all here for you....Big hug....B
Michela,
Goodness, that is a long time to get a diagnosis. I will stay on top of my Rheumy. Thanks for responding. Take care~
Michela said:
I have been on a flare for the past 10 years but my blood tests never show it and I have never had the butterfly rash but my cheeks get really red off and on for no reason. I have extremely dry eyes where contact lenses pop off as they have nothing to stick to. I don't always show swelling but my ankles and knees feel like they are about 3 times as big. My hands always hurt since for ever! I was finally diagnosed with Lupus but it took me 10 years to get a final diagnoses as it looked like psoriatic arthritis then RA and finally lupus. Don't ignore it, make sure you keep going back! Good luck!
Thanks Stella, maybe one day we can get together & run a marathon then hit some softballs, lol.. Take care of yourself~
stella said:
Oh yes im very familiar with the softball knees! And the feeling of running a marathon! Im sorry, hang in there, lots of good info and people on this site
Goodness Chelle, I am sorry for all you have been through. I hope your medication continues to help relieve some of your symptoms. Oh, my memory is horrible!! Take care~
chelle9323 said:
I can tell you what my symptoms are and they are about the same. I was hurting a lot back some may. they thought I had a blood clot going to my lungs, so off to the er I went. I had the purple veins in my legs popping, my feet were purple, my toes looked like they were a story from the nutty professor, I am right handed, and my hand burned my skin hurt, my fingers wrist and elbow looked like I was fat. I went from weighing in at 188 pounds to 230 pounds in two weeks. my chest hurt sharp pains like someone stabbing me. One minute I was nice and friendly, then all of a sudden I was the meanest person out there. I could not sleep at night and if I did I woke up in a sweat. I did not eat but still gained weight. I did not want to do anything go any where my family doctor told me to get out and exercise, I said I would if I could walk, I got another opinion, he sent me to the er, were after 11 hours they told me nothing. mri, ct scan blood work every hour, xray untra sound. next to a heart doctor, where I got a stress test, nothing more blood work, stress test came back and said I was healthier than a marathon runner. sent to an arthritis doctor, said yes you have lupus with rayman's disease, and ryman arthrists with a vit d diffency. I just wonder how long I have had it because I am very sensitive to sunlight, I have the butterfly patch in my hair but was always told oh it pyscrisis and was given coal shampoo. depression comes and goes, but when I was put on depression pills they made me foggy, sleep all the time as in I would take a pill and 15 minutes later I would be sleep for hours. I have the little round spots on my legs and have them pretty much all my life, honestly they look like ringworm but if you look close to them they look like dried skin. I ve had 4 miscarriages and a daughter that I had preclampcy with. I have dry mouth all the time, I am always drinking something I forget everything unless I make a list, I do mean everything. hope that helps. im just 2 weeks into the pills and I see a big difference well with swelling and the sweats are gone, but I still have everything else.
Oh no, are you kidding me!! That is terrible. How can a doctor say that about writing down your symptoms, how rude. Who in the world wants to be sick not to add have nothing better to do. I am so sorry you are going through this without the support of a caring doctor. If you can I would keep trying until someone listens. Hang in there~ ((hugs))
snoopysbaby said:
Well I was diagnosed last month with sle. Then they sent me to another rheumatologist who in less than 5 minutes said he did not believe I had I it. even tho all my blood work came back pretty much positive for it, he said he didn't believe it. I wrote down all the symptoms I have had over the last 5 years, and he said it looked like I went to a lupus site and just started writing down symptoms. he did not believe that I actually have had all the symptoms I wrote down. I went to my regular doctor who verified all the symptoms that I had written, but he said that didn't matter since he didn't see them himself. he repeated my blood work and again it came back positive, and he said he still didn't believe it. he said he thinks I need an anti depressive. so I guess I just have to try and manage my symptoms myself, as I don't know what else to do.
Snoopysbaby...
Go to ANOTHER rheumatologist. Do not let yourself be bullied into a lack of diagnosis. You should never continue to see any doctor who would treat you like that and would call you a liar, which is basically what that rheumatologist has done. Do NOT just let it go and self-medicate. If you DO have SLE, you should get the appropriate treatment. The potential for serious complications is not worth the risk...even if you ARE depressive. As someone stated, earlier, you have to be your own best advocate. If YOU don't fight for your own well-being, nobody else will. Wishing you all the best.
snoopysbaby said:
Well I was diagnosed last month with sle. Then they sent me to another rheumatologist who in less than 5 minutes said he did not believe I had I it. even tho all my blood work came back pretty much positive for it, he said he didn't believe it. I wrote down all the symptoms I have had over the last 5 years, and he said it looked like I went to a lupus site and just started writing down symptoms. he did not believe that I actually have had all the symptoms I wrote down. I went to my regular doctor who verified all the symptoms that I had written, but he said that didn't matter since he didn't see them himself. he repeated my blood work and again it came back positive, and he said he still didn't believe it. he said he thinks I need an anti depressive. so I guess I just have to try and manage my symptoms myself, as I don't know what else to do.
Shannon,
Here's the sequence. It comes from The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace.
"Antinuclear antibodies appear first, followed by anti-DNA and antiphospholipid antibodies, and then anti-SM and anti-RNP. The persistence of debris from damaged cells results in further autoantibody formation."
It doesn't necessarily mean that you'll develop all of those antibodies, it's just the order in which they develop according to what researchers have found. Like I said, it took two years since my first positive ANA before I developed anti-DNA. My dad just has a positive ANA and anti-DNA and low platelets, and he's had lupus for (hold on, let me count)... almost 20 years. Everyone's different. Praying for the best for you!
Thank you so much, this will be a big help when & of that times comes for questioning.
Ballerina8876 said:
Shannon,
Here's the sequence. It comes from The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace.
"Antinuclear antibodies appear first, followed by anti-DNA and antiphospholipid antibodies, and then anti-SM and anti-RNP. The persistence of debris from damaged cells results in further autoantibody formation."
It doesn't necessarily mean that you'll develop all of those antibodies, it's just the order in which they develop according to what researchers have found. Like I said, it took two years since my first positive ANA before I developed anti-DNA. My dad just has a positive ANA and anti-DNA and low platelets, and he's had lupus for (hold on, let me count)... almost 20 years. Everyone's different. Praying for the best for you!
Michela - I do believe we are twins. Add an entire spine full of spondylitis (all kinds of bad stuff from the inflammatory arthritis) and you would describe me to a T. I do have high SED & CRP, but negative ANA so far and cheeks that turn bright red/purple, but no rash. Hugs, Dee
Michela said:
I have been on a flare for the past 10 years but my blood tests never show it and I have never had the butterfly rash but my cheeks get really red off and on for no reason. I have extremely dry eyes where contact lenses pop off as they have nothing to stick to. I don't always show swelling but my ankles and knees feel like they are about 3 times as big. My hands always hurt since for ever! I was finally diagnosed with Lupus but it took me 10 years to get a final diagnoses as it looked like psoriatic arthritis then RA and finally lupus. Don't ignore it, make sure you keep going back! Good luck!