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Tracking Your Lupus Triggers
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Christine Miserandino posted:
Sometimes, I feel like a detective. Instead of seeking clues to solve a crime, I look for clues to the factors that might trigger my lupus, hoping these signs will help me ward off a potential flare.

I am not always the best "detective," and sometimes flares or lupus symptoms still appear, but I try my best to take a proactive approach to managing my lupus. When I'm feeling bad, I look for possible lupus triggers by taking note of what I think I did or didn't do before the symptoms appeared. Then I try to avoid that possible trigger in the future. It's that simple.

Lupus triggers will be different for everyone, but here are some that I have experienced:

Sunlight
People with lupus know that direct sunlight is one of the most common triggers to avoid. We hear all about photosensitivity and lupus. I do my best to stay out of the sun, use an effective sunscreen, wear big hats, and take other measures to avoid direct sunlight. Now that I have become a mom, it's often hard for me to stay out of the sun. When I am in the sun, I notice I will feel fatigued, or get a migraine headache.

Not Eating
I know that if I miss a meal or a snack, I end up feeling affected by many lupus symptoms. I also find that if feeling nauseous kept me from eating in the first place, I will always feel worse later if I don't have anything in my stomach. Eating regularly helps keep my energy at a consistent level, and also reminds me to take my medicine on a regular schedule.

Weather Changes
My body gets achy, and my joints get swollen whenever it is raining, or whenever there is a drastic weather change. Although I obviously cannot avoid this trigger, I can make note of it and try to arrange my schedule accordingly when a major weather change is expected.

These are just a few examples of lupus triggers for me. I also notice that experiencing stress, a lack of sleep, and even my menstrual cycle can affect how I am feeling.

I know some patients who keep an elaborate medical journal that lists every day, how they were feeling, what they ate, their temperature, and other factors to help them better understand their bodies and their lupus. I did something like that when I was first diagnosed with lupus.

These days, I keep a simple calendar that I occasionally mark the differences in how I feel, changes in medications, and other useful information. I wish I kept better track of what factors presently trigger my lupus symptoms.

You need to find out what works best for you. Lupus is an ever-changing disease. I have had lupus for more than 18 years, and what triggered my lupus at the beginning is somewhat different than what triggers it now. If we don't know our own bodies and how to best take good care of ourselves, how can we expect anyone else to be able to help?

Tell me about the detective work that helped you learn your lupus triggers. What methods have you developed to help avoid triggering your lupus symptoms and flares?
- Christine Miserandino
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MaryConcordNC responded:
Several of my doctors have mentioned that I will become an 'expert' in the condition and what affects me, and I need to share this with them. As someone who worked in IT help desks and training people in cause analysis, this is a natural for me. While I do not have celiac disease, I tried moving to a gluten-free diet, and then observed the results when I ate something with wheat (usually flour in a sauce). I found that the next day, I'd feel the pain in my joints, especially my hands, and it would be gone within 24 hrs. The most interesting problem was with my esophagus. I was seeing a gastroenterologist for severe problems, and the tests were all coming back with very little evidence of problems. $700 dollars later (this was just my co-pay) I found that increasing my prednisone by just 5 mg made all the esophagus problems go away! I have had severe eye irritation from the disease, and I have been able to distinguish between when it's the Lupus, and when it is probably allergies or dry air from my travel. I only keep a journal when I'm in severe flare, but I keep track of problems between doctor visits, and bring this in with my list of meds, and other important medical info to each doctor visit - not just my rheumatologist, but my optometrist, family physician, and gastroenterologist. I'm also keeping up my own EHR/PHR through Aetna, Microsoft's HealthVault, and I synch this with a product Alert Notification which provides a card and member code so that any emergency provider can call the number on my card and get my info. We have to take control of our medical info and reactions, as we are our own best experts in assisting our physicians.
 
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scooiego replied to MaryConcordNC's response:
I have had lupus symptoms for quite a long time. I had blood tests and it seems that the results are not "positive" but not "negative". I've mentioned lupus to my family doctor, but he felt that I didn't have this disease. I really don't know myself. I have always felt that we are the ones who know our own bodies better than anybody else, including physicians.
I see a trend, and I decided to investigate.
I have flare-ups. I get soreness in my ribs, knees, hips, back, neck. It resembles arthritis, which I am sure is a part of the issue.
I have so many other medical issues also, that it is hard to distinguish what could be a part of the possibility of haviing lupus or symptoms of my other issues.

I've had seizures "aureas" and am on Lamictal. I've had pulmonary emboli for which I take coumadin. My left eye has started to become continually red over the past year and I was told to take eye drops for "dry eye". I also think it is related to the use of hair spray. I have a lot of stressors in my life, just like everybody, but it wears me out. I get very tired when I get these flare ups.

Much of what I am experiencing seems to be related to the symptoms of lupus. Can you have a very mild form of the disease?
 
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Elizabeth_WebMD_Staff replied to scooiego's response:
Hello scooiego -

I wanted to pop in and welcome you to our Lupus Community.

I also wanted to let you know, the discussion you are responding to is an older one, Christine was a guest expert here and she may not be following the discussion at this time.

You have a great question, for more response, please considering reposting your concerns and questions as a new discussion.

Elizabeth
 
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freejala replied to scooiego's response:
Hi! I was diagnosed in Nov 2011 with sle and it took having my family Dr send me to a cancer Dr ( they were thinking Leukemia) then the cancer Dr said the only sign of sle was my low white blood count but he did believe I had sle so he refered me to a rheumatologist who then confirmed the lupus and has put me on meds to help, I have been feeling better for the past month (it was a very rough climb to get here). But my family Dr is still not convinced that I have sle, so I would suggest maybe a second opinion or pressing him to refer you to a rheumatologist even to just ease your mind.
 
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mianec replied to scooiego's response:
Have you checked Candida?
 
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rottierescuer replied to mianec's response:
To all my Lupus friends - I was diagnosed over 11 yrs. ago. It took alot of perserverance and self-advocacy! My doctors also did not want to give me this diagnosis but I KNEW!!! PLEASE, PLEASE - fight for your self and keep pushing on. I have been digilent in my fight, tracking symptoms, appts. and self help - I advise you all to do the same - it has been a medical battle and also a personal battle; but I'M winning!!! And doing everything I can to put this silent horror behind me - at least my doctors are now seeing it, my family now understands me and I feel better about MYSELF!!! Push on and DON'T give up!!! God bless you all.
 
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wwhite responded:
Hello;
I am new to this community even though I have Lupus and have had it for the past 13 years, but I can never learn too much about this illness. I have systemic lupus which can and will affect my internal organs.
I watched the videos and found them enlightening and encouraging. I there are millions living with Lupus this lets me know I am not alone in this struggle.
I try to focus on positive things and keep active as possible through daily exercises and I began a writing career where I publishes Bi-weekly inspirational discussions on my blog site http://iwllie-writing.blogspot.com and other social media sights.
I have notices that the older I get it slow me down more and I have learned to listen to my body and do within my means for that day. Also, I noticed that changes in the weather especially cold weather affects me more. There are days when I just do not have energy to do what I may want to, but I have learned to relax for that day, because there is always tomorrow. A lack of a good night sleep helps trigger my lupus as well as being under stress and worry.
I do need a internal Lupus doctor who thoroughly understands systemic Lupus.


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