Hello, Northernelf.
I also get headaches even though I'm not dehydrated. My stomach also acts up too, but I take Nexium for that. As for the getting itching and no rash or nothing is there, I can totally understand. I've have scars where I've thought I had something on my leg and I uncontrollably itch. I live in Texas so it stays hot majority of the year, that's when I mostly flare up. But when it gets cold I do get achy.

Hi Northernelf

I am right there with you on a lot of your symptoms. I didn't realize that blurry vision could be attributed to Lupus as well. I too, have that symptom, my eyes get blurry often and it almsot always seems to be at night. I have a really hard time seeing things and it gets kind of scary.

Another symptom I have noticed is that I am cold all the time. I have never in my life been a person that is cold. Usually I am always hot. Now I am constanly cold, I have to have several blankets on me, a heating blanket not only for the joint/muscle pain but also for the warmth. I can't seem to get warm ever.

For me that is the biggest thing that I have found that is different, or that I don't see other people mentioning so I don't know if it is Lupus symptom or not. Good topic thanks for asking about it.

Busted thermostat! I am either too hot or too cold!
Mary Ann

Funny...I sit here too... in blanket... ice cold hands... everyone else is warm... what the heck. So achy...
Weather. I can cope mostly.... but sometimes....ahhhh. What the heck.

Maybe that "cold spell" yesterday meant something - I am broken today...my knees & ankles feel like they are rotting from the inside out...elbows, wrists, hands not far behind. It's going to be a long winter.

I keep telling myself that I am going to start a daily journal of how I am feeling so I can look back and compare to see if I notice a trend. For example with the weather, feeling cold etc. I can never remember (brain fog?) what happened before a flare to that could have triggered a flare. I have been feeling ok the past few days, but the weather here has been warmer and my regular dr put me on 5mg of prednisone. I wasn't going to take any meds but I was in a bad place last weekend. I am really trying to do this without meds and am trying to focus on eathing healthier and exercising. Its hard when you hurt so much and are so so tired. Then add in the depression.... Today its 74 here in Kalamzoo, MI and I am going to go out and walk. The rest of the week its going to be cold and yucky. Praying that I don't feel like crap the rest of the week. I hope you find some comfort too. I feel your pain...literally.

Hi Northernelf. I have all the symptoms you have, even the runny nose, I think the post nasal drip may cause the sore throat and all of it may be initiated by seasonal allergies. That's what kicks mine off and it lingers what seems like forever. I use Laratadine(not sure if I spelled that right) which helps.

I too, always feel like I'm coming down with something, like it's moving in one suitcase at a time, stays for a while and them moves out the same way it came in. I can get a cold or flu before everyone else and have it long after everyone else is well.

As for the butterfly rash, what you described sounds like it to me. I get the dry and itchy rash and the weather definitely triggers a flare for me, every season change I flare but the winter is the worse by far.
I think the plaquenil and/or allergies meds could cause some of the eye problems your experiencing.

Have you ever experienced the Neuropathy, not sure if I'm naming that correctly, it affects my feet and lower legs. It is the worse thing I've ever felt, as if your skin is doing a "cold burn", that's the only way I know to describe it. It is awful, I wouldn't wish it on my enemies. This is also something that occurs mostly in winter, but I've had it in the spring and summer as well.

I hope you feel better soon.

Hello,
I can relate to all the symptoms described here already, because at one time or another I also went through phases with symptoms like those described, whilst going through an SLE/MCTD-flare-up...
There is one point for me to add and that is that unfortunately many SLE/MCTD-patients are prone to get their kidneys involved and/or develop a kidney disease whilst going throgh an SLE/MCTD flare-up...
This should be checked-up with your doctor through a blood-urine-test on a regular basis to prevent kidney damage from happening, before it could get out of control... I mention this as an end-stage-kidney-failure-patient with SLE/MCTD and a 6-7% kidney function, still without having started dialysis... not yet anyway...
Another point is to regularly check-up your bloood pressure to make sure the BP cannot get out of control during a flare-up. It might be a good investment to buy your own BP/machine (they don't cost that much in health stores) and check-up your BP regularly yourself, especially whilst you suffer from dizzyness/headages etc.
Good luck from Kristina.

I have a lot of the symptoms that were mentioned. Cooler weather makes me achy, warmer weather gives me rashes and exhaustion. I also feel dehydrated at times.

I find it helps to pee into a plastic urinal so I can check the color. Often it's very dark when I'm not at all thirsty. Since I have to urinate really often, it saves an ocean of water, since I only dump the urinal and flush the toilet when the bottle is full. At times I feel dehydrated when urine color is a pale yellow, so I know it's not real.

Rinsing the bottle with a little vinegar whenever it's empty keeps it clean and odorless.

I just read an article about gluten sensitivity. If you don't test positive for celiac disease, you shouldn't be avoiding gluten. That can lead to several dietary deficiencies...and all for no reason. This article was in a health magazine published by one of my local hospital groups. Gluten avoidance without celiac deficiency is becoming widespread, and I agree with the article that it's a dietary fad.

It disturbs me that all kinds of mainstays of vegetarianism are currently getting a bad rap in the media on highly questionable grounds. I suspect a conspiracy of propaganda by groups like the Cattleman's Association and the Dairy Council. Whole wheat is now taboo, soy milk, canola oil, nutritional yeast, etc. In my opinion none of these scare tactics have any scientific basis whatsoever.

I've personally found that a diet based on whole grains, beans, and loads of fresh vegetables...especially greens...makes me feel much better. And I only eat organic food.

Richie, my Rheumy tested me for gluten allergy, the blood test said I wasn't allergic to it. She wants me to avoid it, to try and reduce the inflammation. I have found that Being a vegetarian, I used to eat wheat gluten veggie meats, without any problems, but soy and wheat bread mad me sick. I have been a lacto vegetarian for 39 years.

Gluten contributes to inflammation?...hadn't heard that one, Jon. I'll look into it.

So far no evidence that non-celiac gluten sensitivity is real...Dr. Barry Sears, author of The Inflammation Zone, recommends whole grains in his anti-inflammatory diet that he promotes.

If someone thinks that they have a sensitivity to gluten that's not celiac disease, they should do a gluten challenge...stay off gluten for a few months, then eat some whole wheat bread. If they don't get sick, no sensitivity. Just avoiding gluten because someone says to...that seems pointless to me.

My opinion is that aside from celiac disease, which is definitely real, all this anti-gluten stuff is just another diet fad. There's no hard evidence that non-celiac gluten sensitivity is real.

Different doctors believe differently on the subject of grains. For instance, my doctor (an M.D.), told me that "Gluten is like a poison for anyone with an autoimmune disease" and that "Gluten likes to attack the thyroid." Two of my doctors told me that anyone suspecting that gluten is a problem should take the "90-day challenge." For me, one doctor did a blood test for celiac disease, which came back negative. But I had been gluten-free for a year before the test, so the test had to come back negative as a person must be currently consuming gluten for the test to come back positive. Thus, there's no way for me to know if I have CD. Of course, that doctor then told me that the blood test is only 40% accurate anyway. He said the "gold standard" is a biopsy of the small intestine, which is only accurate if they biopsy a portion of the intestine that's damaged. He wouldn't do the procedure on me because of my compromised immune system and fear of infection. So I call myself "gluten intolerant" because anytime I'm accidentally glutened, my inflammation levels rise within 30-60 minutes, and I'm sick for up to a week. Celiacs do not always show the "normal" signs--only 85% show the usual abdominal problems. We are all individuals and must find what works best for us. For me, avoiding gluten and artificial sweeteners works well.

Regarding "gluten sensitivity," some doctors now think that people in this category might actually have a problem with FODMAPs, which is why they benefit from being gluten-free. Here are a few articles that you might find of interest on this subject, and it could explain why some of us cannot consume gluten. Best wishes to you for remaining healthy.
http://www.thehealthyhomeeconomist.com/real-reason-for-toxic-wheat-its-not-gluten/
http://www.theatlantic.com/health/archive/2013/12/this-is-your-brain-on-gluten/282550/

Oops! Missed this one.
http://theceliacmd.com/2013/09/gluten-really-culprit-gluten-sensitivity/

I am headachey, cold and the weather shifts and I am a ball of pain. Funny how before I was diagnosed I thought it was just arthritis or getting older. Man, now I feel like I have been blind for years and someone just pulled off the blindfold.