i know each individual has different symptoms but i just wondered if a few of you could tell me what constitues a flare for you -for me i seem to stay in one and have been this way since august. one day im ok, the next day im not, like today i have no energy (no sleep) but i also feel drained and just sick, like flu like symptoms.
also, have any of you gone into remission or is their such thing because i had as good year a few years back. then i had a total hysterectomy 5 years ago and it awoke the beast - i take hormone replacement and my blood hormones levels are better than average so i know its not that,
also, sometimes the sun does not bother me, but most of the time it does, i get very sick sometimes if i am in the sun too long.
Ok, take vitamin D if you go out im the sun often. I have been having a flare for almost a year now. I haven’t been medicine for lupus in a while. Usually lupus flares are triggered by trauma or illness. It could be the climate or weather too dear.
Yes, I have gone into remission in the past. I did great for the most part of 5 years. I started having issues with my kidneys and then moved back to Florida and have had nothing but issues. I know it’s due to the heat. Remember that even though you don’t notice damage on the outside, doesn’t mean it isn’t damaging the inside.
The Flu like symptoms, I have experienced many times. It could just be the flare or an infection. You
would probably have a temperature if it was infection. Do note that Lupus is a very confusing disease. A proper diet is important. Reasearch all you can but realize that some things might be scary so don’t jump the gun until you get definitive answers.
Ill yell u about my history and situation. Although they say no two people are alike with lupus. Kind of like a snow flake. Everyone is different. But from hearing other people’s symptoms I can relate. In my case I swear when I had my wisdom teeth pulled 4 years ago that’s when I started to notice a change. When I had my teeth pulled it was a terrible experience. I wound up with dry socket in both areas that my teeth were pulled and If anyone has ever had this then u know how painful it is. Anyway. After that I started to notice pain in my arms and legs and had problems urinating. I went to a urologist who thought I may have MS so they started to run tests. I did a ton of tests and bloodwork. Well my doctor calls me with the results and says you have lupus you need to see a rheumatologist. I went to a rheumy who put me on steroids right away and plaquenil as well as percocet for the pain. For 3 years I suffered. Never really went into remission and I know that for some people you can go into remission. My doctor just kept changing my meds or increasing dosages and I never got better. Sometimes my flares get so bad that I cannot get out of bed for days. And I live alone so it is very hard for me. My family was supportive in the beginning but not anymore. I dunno if they don’t know how to help me or if thy don’t believe me when I say I don’t feel well or if they just don’t care. But my relationships with family and some friends have been damaged because of this illness. I recently had to quit my job as a massage therapist because the pain in my arms is so bad. So now I bartend part time but I can’t seem to make ends meet. I am struggling terribly and may need to move in with my dad because I can’t support myself anymore and am getting worse. I am seeing a new rheumy who ran tests again and said my lupus had progressed alot. In 3 years it has gotten much worse. She is trying to way me on benlysta now wich is the newest and only med strictly for lupus. I am waiting to see if my insurance will approve it. It is very expensive so I’m hoping for the best. Currently my symptoms are pain in my arms , legs, hands, wrists, ankles and knees and feet and extreme fatigue. I am losing hope and very depressed. I am very lonely. Sad all the time. Everyone say to be positive but it’s not that easy when u r constantly suffering. I truly hope the best for u. And everyone else suffering. It’s a hard battle but we have no choice but to fight it. I will pray for all of us. My advice To u is do alot of research. Ask alot of questions and take any support you can find. Good luck to you
Lupus causes depression by itself along with depression from dealing with being chronically ill with an invisible disease and the constant pain. Cymbalta has really helped me. Ask your doctors for samples. If you ever need to talk, please feel free to email me anytime,
Jillynic said:
I am losing hope and very depressed. I am very lonely. Sad all the time. Everyone say to be positive but it's not that easy when u r constantly suffering. I truly hope the best for u. And everyone else suffering. It's a hard battle but we have no choice but to fight it. I will pray for all of us. My advice To u is do alot of research. Ask alot of questions and take any support you can find. Good luck to you :-)
For me, my Lupus flared severe last time--following major brain surgery. I was ok, until a couple days after I got released from the hospital, back home. It (Lupus) hit me like A TON OF BRICKS! I literally COULD NOT LIFT MY FORK TO EAT, AND HAD TO BE FED BY MY ROOMATE--MY ARMS WERE SIMPLY TOO WEAK TO LIFT THE DARN FORK. That was BY FAR THE WORST OF THE WORST LUPUS FLARES I HAVE EVER EVER EXPERIENCED. I was literally lifeless to any level of muscular strength. That is, I HAD NONE.
Physical stresses, such as surgery will definitely trigger flares, as will extreme mental stress.
Active disease can be pretty bad, even without being a flare. A lot of people don’t realize there is a difference. A flare is whatever is your personally worse symptoms - increased pain that alters your daily function severely, rashes that won’t heal up, extreme fatigue etc. By medical definition for those with severe cases of Lupus, if inflammatory markers go up and definitely when there is a negative effect on organ function, that’s a flare. I’ve met a lot of people that say they’ve been in a flare for “years”. That’s not a flare. In my case, it’s mostly about pain and fatigue. Malar rashes come and go with or without that. You also asked about remission, and yes I had it. Last year I had 2 major surgeries, loss of health insurance and income, and the stress finally pushed me out of it. I seem to be flirting with remission again finally… but it’s hard to tell some days. I still have limitations on energy that are very clear. My pain level is far down though.
Sun: Just say no. Don’t tempt fate and make matters worse. Reduce your exposure, stay out of it during peak hours, wear sunblock, and protect yourself. The reality for us is that it often does unseen damage. If you’re reacting at all, then it’s time to pay heed.
Flares for me are an increased level of disability...increased pain in joints and back...increased level of skin rash and discoid rashes...increased mental disability (sometimes my hubby can tell when I am going in a flare before I can just by that alone). A greater feeling of all over unwellness...more swelling and inflammation in my whole body...and general malaise and exhaustion. I have had lupus for decades. I've been in remissions that encompassed very reduced symptoms for years at a time...and then in situations where flares seem to roll around every other month. Usually the flares are accompanied by some other circumstance...whether it be greater stress than usual...or another illness or infection of some sort...but sometimes they just happen. Some flares last only a few days...some a few weeks...and some unfortunately months. Like most of us I have been to several dr.s...and have had the arguments for and against lupus sometimes even by two or more rheumatologists. Many say...lupus like immune disorder...and prescribe the meds for lupus...which often...but not always.. help. I have moved to different states over the last 20 years or so of my life....and each time it is basically going thru ALL the tests and maybes and speculations of new physicians...as they try to concur...or disagree with former diagnoses. Most of the time I pretty much KNOW I have lupus...and deal accordingly. Throughout the last 40 years of my life I have had continual infections...a breech birth with problems and a miscarriage...I have lost almost every unnecessary organ, tonsils, appendix, gall bladder, teeth (due to infections of the gums and the bone in the jaws) I have had several small strokes, carotid artery surgery...ummm let's see...is there more...oh yes...an infected tumor in my ear and ear surgery...sleep apnea.. No one else in my family has had ALL of these things...many not even one of them...so I am going WITH the generally sound Lupus diagnosis...lol. What I've learned is...if you don't consider yourself disabled...and don't consider yourself as chronically ill...you survive it all better. The first doctor who really addressed my varying ailments...wrote in his description...patient had very weird symptoms and illnesses. From that day on I just considered my "health issues" weird...and not anything else. I swear I have been better for not thinking each outbreak was LUPUS...and just dealing with it as a NEW weird thing. I was 19 when the first symptoms became obvious...and I am almost 68 (next week) now. I have lived through it all treating it as one NEW illness...or one NEW symptom at a time...and so far...I still have great days...and still have very "not so great" days. Both Plaquenil and Prednisone seems to work well for me...and I have been off and on doses of it for probably the last twenty years...anywhere from 1mg daily...to 20 mg daily of prednisone...and months where none is needed. I have osteo arthritis...and rheumatoid arthritis...I have some kidney involvement...and STILL...I have good days. I'd say...deal with the disease as lightly as possible when you can...and as aggressively as possible when you must...and do NOT think of yourself as disabled by it...even when you are. Think of yourself as someone with a weird system...and keep going. Blessings and good fortune to you all!
As I have experience I noticed when it is damp and raining outside, my bones hurts and legs become weak. Now as this morning, I woke up with a bad headache. It seems I am sleeping in longer than I usual do. I am usual up between 7:30 a.m. or little after but I been getting up later. If I am in the sun to long, it does a job on my body. I was just diagnose with Lupus about two weeks ago, I am just learning the ins and outs living with Lupus disease. Some days I have very good days but than when I have flare ups it hits me hard.
I woke up with so much pain this morning in my joints and with a huge pounding headache that seem just would not go away. Neck pain, it is the pain that makes me me depressed where for no reasons I break down in tears, being sad all the time. I know just being diagnose with Lupus two weeks ago, I have done a lot of research. I also live with other health issues that triggers my lupus flare ups. Hyperthyroidism, Head Trauma Amnesia, asthma, blood clot disorder, my blood pressure has being running high than usual, that is not normal for me, I usual run low blood pressure. It is worse when the weather changes. I try not to focus on my aches and pains but to think positive and may I add prayers do work and is the best medicine. I pray every morning and thank God for each day I don't have no flare ups. It came down to where I now have to walk with a walker or a cane for support and balance. I have fear of falling again. I get fatigue and when that happens my legs get shaky and weak but walking with a walker helps.
I pray for all of who is living with this confusing disease. Never know what to expect from one day to the next living with lupus: Keep your chin up and try praying. I will keep continue praying for everybody with lupus.
Rejara said:
Jillynic.
Lupus causes depression by itself along with depression from dealing with being chronically ill with an invisible disease and the constant pain. Cymbalta has really helped me. Ask your doctors for samples. If you ever need to talk, please feel free to email me anytime,
Jillynic said:
I am losing hope and very depressed. I am very lonely. Sad all the time. Everyone say to be positive but it's not that easy when u r constantly suffering. I truly hope the best for u. And everyone else suffering. It's a hard battle but we have no choice but to fight it. I will pray for all of us. My advice To u is do alot of research. Ask alot of questions and take any support you can find. Good luck to you :-)
Ive been dx'd with Lupus since 2001 but have never really paid much to it even tho I have been sick alot. So glad for this site because I have many questions myself.
For me my flare ups start with feeling exhausted and tired causing me to sleep alot. The muscles in my legs hurt and I have been experiencing some confusion lately. I can't be out in the sun for longer than a hour and then I get a horrible headache. Just the sun hitting my arm when I drve cause me to feel like I am already sunburnt.
sorry your going thru so much, i wish i could help you in some way, i will say a prayer for all us too!
sounds like i have the same symptoms you do. gentle hugs, kelly Jillynic said:
Ill yell u about my history and situation. Although they say no two people are alike with lupus. Kind of like a snow flake. Everyone is different. But from hearing other people's symptoms I can relate. In my case I swear when I had my wisdom teeth pulled 4 years ago that's when I started to notice a change. When I had my teeth pulled it was a terrible experience. I wound up with dry socket in both areas that my teeth were pulled and If anyone has ever had this then u know how painful it is. Anyway. After that I started to notice pain in my arms and legs and had problems urinating. I went to a urologist who thought I may have MS so they started to run tests. I did a ton of tests and bloodwork. Well my doctor calls me with the results and says you have lupus you need to see a rheumatologist. I went to a rheumy who put me on steroids right away and plaquenil as well as percocet for the pain. For 3 years I suffered. Never really went into remission and I know that for some people you can go into remission. My doctor just kept changing my meds or increasing dosages and I never got better. Sometimes my flares get so bad that I cannot get out of bed for days. And I live alone so it is very hard for me. My family was supportive in the beginning but not anymore. I dunno if they don't know how to help me or if thy don't believe me when I say I don't feel well or if they just don't care. But my relationships with family and some friends have been damaged because of this illness. I recently had to quit my job as a massage therapist because the pain in my arms is so bad. So now I bartend part time but I can't seem to make ends meet. I am struggling terribly and may need to move in with my dad because I can't support myself anymore and am getting worse. I am seeing a new rheumy who ran tests again and said my lupus had progressed alot. In 3 years it has gotten much worse. She is trying to way me on benlysta now wich is the newest and only med strictly for lupus. I am waiting to see if my insurance will approve it. It is very expensive so I'm hoping for the best. Currently my symptoms are pain in my arms , legs, hands, wrists, ankles and knees and feet and extreme fatigue. I am losing hope and very depressed. I am very lonely. Sad all the time. Everyone say to be positive but it's not that easy when u r constantly suffering. I truly hope the best for u. And everyone else suffering. It's a hard battle but we have no choice but to fight it. I will pray for all of us. My advice To u is do alot of research. Ask alot of questions and take any support you can find. Good luck to you :-)
ya i know, and wouldnt you know we put in a pool last year !
Tala said:
Active disease can be pretty bad, even without being a flare. A lot of people don't realize there is a difference. A flare is whatever is your personally worse symptoms - increased pain that alters your daily function severely, rashes that won't heal up, extreme fatigue etc. By medical definition for those with severe cases of Lupus, if inflammatory markers go up and definitely when there is a negative effect on organ function, that's a flare. I've met a lot of people that say they've been in a flare for "years". That's not a flare. In my case, it's mostly about pain and fatigue. Malar rashes come and go with or without that. You also asked about remission, and yes I had it. Last year I had 2 major surgeries, loss of health insurance and income, and the stress finally pushed me out of it. I seem to be flirting with remission again finally.. but it's hard to tell some days. I still have limitations on energy that are very clear. My pain level is far down though.
Sun: Just say no. Don't tempt fate and make matters worse. Reduce your exposure, stay out of it during peak hours, wear sunblock, and protect yourself. The reality for us is that it often does unseen damage. If you're reacting at all, then it's time to pay heed.
ya, i guess i will be swimming in the evenings, we just put it in at the end of the year last year so didnt really get to enjoy it, it is good exercise for people like me who hurt so bad, that is why we put it in mainly anyway, but up until the last 5 years i was a beach babe and had a tan every year, got a little indian blood in me so i tanned easily-last year i layed out for about an hour and got sick as a dog !!!!!
Tala said:
If it's your pool then you can swim at any hour you want to though. :-)
