I was wondering if others wouldn't mind sharing some of the things that triggers flares and increasing symptoms in them, and how do you manage these. How do you know when a flare-up has truly "ended"? Do they ever really "end"? And how often do your symptoms vary from day to day? For instance, if sunlight is a trigger, and you spend several days indoors out of the sun, do you notice your symptoms decrease, only to increase again after sun exposure?
I don't have a lupus diagnosis, but the course my symptoms are taking make me wonder if I may be in the very early stages of developing something autoimmune, so I hope you don't mind me hanging around asking questions! The most puzzling thing to me, and the one aspect my current rheumatologist isn't really trying to understand, is that how I feel can vary SO MUCH from day to day. It's very frustrating to me, because if I stay indoors, out of the sun, heat and take it easy for a few days, I almost feel "normal" again. And I get my hopes up, because I think whatever is wrong with me just MIGHT be gone on its own. But then I go to work for several days, deal with some indirect sunlight and heat, try to get a lot of work done, in addition to doing extra work at home (ironically, to make some extra money to help pay for all of these doctors' appointments I have ) So then the fatigue and aches slowly start coming back and today I am so fatigued and achy it hurts to move - I feel like my body just crashed. And, I had a few other seizure-like spasms last night, which are some new symptoms I have just developed in the past few weeks. Sigh. It makes me hate to go outdoors even briefly, drive a car when it's sunny, or even leave my house, but I have no choice!
Is this something that happens in lupus, or is this varying of symptoms more common in other illnesses? I have had 2 previous inflammation "flare-ups", but they seemed to go away - one after a heavy dose of Aleve for a few weeks and the second after prednisone - and I think the 2nd "flare-up" could have been also triggered by being premenstrual, a climate change, increased sunlight and heat exposure as well. But this "flare" seems to be hanging around for months and I start to wonder if it will EVER go away. Advil and Aleve only help my headaches, and no one is suggesting prednisone again, so this "flare" keeps hanging around.
How do you get doctors to take these triggers seriously? I know working at an activity level I used to do without a problem is giving me problems now, and I know premenstrual and now very early menstrual time is bad for my symptoms, even IF I avoid other possible triggers. While I don't yet know whether or not sunlight is a bigger trigger or if it's truly heat (both seem to bother me), I've written enough of my symptoms down day-to-day to know SOMETHING is triggering my symptoms, and this is NOT just a coincidence! People who see me everyday know that, but it's hard to get the message across to doctors, who only see you once in a while. And it makes me wonder if I'm focusing on these possible triggers for nothing - are these really not important in helping to figure out what is wrong? None of my abnormal bloodwork is "significant enough" to indicate a specific problem, but something is going on.
I was just looking for some insight as to how triggers and flare-ups affect you, and if you go through something similar, or if this is not characteristic of what you've experienced. Thanks for listening!
I got a preliminary diagnosis last week of SLE Lupus. I have been dealing with Chronic Q Fever for over a year, then most recently with a bout of spinal meningits. My specialist thinks that the long-term infection has brought on the SLE Lupus, and is doing more blood tests to confirm.
I didn't put the connection together about the sunlight/flourescent lighting connection until she asked me if the rash I get sometimes is worse in the sun.
I started making notes about it, and yes, it most certainly does get much worse in the sun - along with headaches, earache, extreme fatigue, dizziness, shakiness, and achy all over. It takes a few days indoors to feel better again. I've found that it doesn't take much time outside for the symptoms to become bad fast. Probably less than 30 minutes, and sometimes only 10-15 minutes is too much time outside.
I sleep a lot, but it doesn't help, as the pain doesn't allow for more than 2-4 hours at a time.
She hasn't started any meds yet other than pain meds, which don't really help as much as they should. ( They make unbearable become moderately bearable, which is better than nothing! )
She did mention that steroids and plaquinil (spelling? ) may be meds that she will try once the spinal meningitis is completely cleared up.
Have you had a Lumbar Puncture? Bloodwork? I've had so many blood tests, that I think I must know what a pincushion feels like! LOL
Do you also have the "butterfly rash"? Mine comes and goes depending on how much time I've spent outside. I find that early morning and late evening doesn't seem to affect me as much as during the late morning/afternoon does. Do you find that to be true for you too?
I wish I could help with how long these flares last - I have that same question.
I wish you the best with your illness. Perhaps one day, they will find a cure for Lupus.
The sun is a big flare trigger; stress, illness, some medications, medication allergies, pregnancy are some other flares. Sometimes people can't really relate anything in particular that brought on a flare, I guess it can just happen whenever as well. I've noticed in myself that sometimes it just seemingly comes out of the blue. Although, in the past when flare free and feeling good, I always exercised alot, went dancing, was just very active when I could be. So perhaps I did overdo it for my own body. It's just very hard to predict. I do know for me the sun can do it..and I also noticed that I get very tired & exhausted when in stores for a while. I also get red, burning face when I sit under my light at my desk at work. So light has alot to do with it.
I agree that sunlight is the most unavoidable trigger for me. My doctor told me to wear a hat with a broad brim, long sleeves in a fabric that is a tight enough weave that you cannot see thru it, and slacks even in the summer. Also use SPF 45+ sunscreen, too. I put on all of this even to go to the mailbox (it's at the end of our long driveway) because I don't have to deal with a flare and that's good to avoid!
My doctor said it was okay to walk from my car to a building (park as close as possible and wear all that stuff), okay to go to a picnic on a cloudy day wearing all of that stuff, and never to plan a day at the beach. Avoiding sunshine from about 10am to 5pm when it's hottest is best, too.
I have a friend who has lupus who got an ice collar to wear to and from work because she lives in TX where it's so very hot. She has the collar in the freezer at home, then at work, so it's cold whenever she gets in her hot car.
As for how to convey all of this to your doctor, I suggest you copy/paste/print the 11 signs of lupus on the sticky at the top of this thread. Then highlight the symptoms you've noticed in yourself. Bear in mind those mouth sores may be tiny and non-painful; my dentist found mine and I had felt nothing. Take that list and a copy of the log you're keeping to give to your doctor. Rheumatologists who have many lupus patients in their practice are the most helpful.
Have you had any blood work to suggest lupus, elevated ANA or sedimentation rate (indicated inflammation)?
One word of caution. Many people with lupus become allergic to sulfa and to sulfonamides. That happened to me and I had no known allergies until then. My worst symptoms came from an allergic reaction to Celebrex because it has a sulfonamide in its chemical makeup.
Barbara - I had an ANA done early in April, when my last flare-up began, and it was negative. But my sedimentation rate was elevated then. Sed rate was also elevated when I had an attack of severe pain in my arms last December (when I was given prednisone) and back in 2002 when I had this chest inflammation (probable pleurisy) and treated myself with Aleve b/c the student health doctor was completely stumped, since my ANA was negative then as well! (Apparently docs don't know what to do with you when you have lupus-like symptoms and a negative ANA - sheesh). The 2 recent elevated bloodwork is why I was referred by my doc to the rheumatologist, but since this is non-specific, and my numbers weren't "significantly" elevated, the rheumy is pretty much ignoring this. Normal is under 20, and my numbers have been in the 30s to low 40s, I think. CRP was borderline elevated. And slightly anemic, although I've been like that for nearly a year. The problem with my symptoms (achy joints, fatigue, history of pleurisy, possible seizures, anemia, inflammation, slight bumps and scarring on my cheeks, worsening symptoms in the sun) is that none of them are very severe, except for my fatigue and sometimes my muscle and joint aches. I know I won't get any kind of diagnosis of anything at this rate, so I either wait for my symptoms to get severe or hopefully find a doc who will at least give me some treatment that helps.
Interesting about the mouth sores, because I have some of those, and I thought I was just imagining them until my dentist found them as well! Also interesting about the sulfa allergy - I developed a penicillin allergy over the past few years, so I get sulfa antibiotics a lot now. I'll have to keep a look out for those then.
Beth - I'm sorry you're dealing with these types of triggers too. For some reason, this sun sensitivity thing is very hard for me to accept, and some days I try to pretend like it's not a problem for me, because it just doesn't make any sense! Not without a lupus diagnosis, at least. I've never had a lumbar puncture before - what exactly does that test for? I see a neurologist this Thursday, and it was originally just another specialist to see to try to get some answers, but now I have these possible mild seizures to talk about as well. I'm assuming the lumbar puncture is something a neuro would do?
With regards to a face rash, I really have no idea if I have one or not. My face, particularly my cheeks, can get really purplish-red after I've been out in the sun, but it's only temporary. I have some scaly-like bumps across my cheeks and in the middle of my forehead, that will NOT go away, and my cheeks and the bottom of my nose is becoming slightly discolored. I notice my skin has changed, my husband and my mom have noticed it, but it's not MAJOR so a doctor will likely just assume it's normal for me. The other thing is that I have brown skin (African-American) and I realize my skin changes probably wouldn't look as drastic to others as someone with fairer skin. Maybe this is why the sun seems to affect my internal symptoms more? Who knows. I haven't paid a lot of attention to the time of day, but I think the 12:00 - 2:00 time is probably the worst for me. Do you have any problems with indirect sunlight? Although I don't spend a lot of time in direct sunlight (I also have bad allergies and really hate the outdoors!) I've noticed that indirect sunlight from a window, especially a car window while driving, is HORRIBLE for me. I drive a lot during the day for my job, so I'm really starting to hate the summertime too!
I'm so sorry you're dealing with this.
I'm very fair skinned, so the sunlight really shows the havoc with my face especially. Flourescent lights also do the same for me too....
Am having abdominal pain, and shoulder pain that is severe. My CRP was elevated, and am still running a fever - one year and 42 days as of today.
My WBC count is still very high also.
I pray that we all get some relief soon from the pain.