Flares and bad days

When you have lupus, you have periods of disease remission and flares. Remission may seem like the disease is gone, but the reality is it never goes away; it’s just quiet. A lupus flare is a period of heightened disease activity which for me, ranges from mild to moderate and to severe. I’ve had both remission and flares all in the same day. Lupus turns on me that fast. After being diagnosed, I’ve become very aware of how I am feeling and what my body is telling me. Many times I can tell when I’m about to get a flare, but there are those times it just sneaks up on me. This is why lupus is so unpredictable.

I can tell a flare is coming when I start to feel very lethargic, beyond the normal amount. This gets tricky because chronic fatigue is a big part of lupus. At this point, I consider this a mild flare and I will get extra sleep for a couple of nights or take more rests throughout the day. If I were to keep pushing myself, I’d end up in a moderate flare.

Moderate flares are much more complex and stop me dead in my tracks. These can last from two days to two weeks. I find myself curled up in bed with what feels like the flu. My joints ache, I have zero energy, and I have no appetite. My temperature is high so I spend the day resting with ice packs all over my body. I am exhausted because my body is using all of its energy to fight itself. It hurts to sleep and it hurts to sit. I am completely uncomfortable and in horrible pain. I take many extra medications and I sleep an enormous amount during a flare. My husband, Patrick, takes care of everything that I could normally do for myself. Time, rest, and extra medication are what help me the most out of a flare.

I have had severe flares for which I’ve ended up in the hospital. These are scary because if I can’t stop the mild or moderate flares, it becomes more involved with my organs. I’ve had many organs affected by a severe flare and I have been admitted for days and weeks at a time. When my body is weakened and my immune system is under attack, I am very susceptible to infection. A flare can snowball quickly out of control which is the number one cause of death among lupus patients. Physically, when I’m in the midst of a flare, I find myself drained but it’s also the emotional toll that consumes me.

I’m usually a very positive person and I try not to allow the pain to cloud my outlook but on those flare days I feel defeated, sad, and withdrawn. I tend to withdraw from the world because I’m in too much pain to think clearly. This is one of the darkest aspects of chronic illness. A lupus flare affects me just as much emotionally as it does physically. I have no idea how long a flare will last so it makes planning or following through with plans, very difficult. I’m saddened when I have to cancel an event I’ve been looking forward to because of a flare. As you may have guessed, these erratic flares make life difficult, but it’s in those times I’m grateful for the understanding and support of my family and friends who help me through.

I wake up daily with one goal in particular: to prevent flares by managing this disease the very best I can. Often with lupus, it can strike without warning despite my best efforts. I’m at peace with the fact that as long as I have lupus I’m going to be dealing with flares. I forge ahead and try and stay positive. I cling to a saying we say at church: “before every Easter Sunday, there’s a Good Friday,” meaning, there is darkness before dawn. This flare shall pass.

We all have different ways a flare affects us. One bit of advice I can pass along is to listen to your body, respect its limitations and adopt realistic ideas about what you can and can’t do. I wish you all the best of health and flare-free days.






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Chris Cronick

About the Author:

Chris Cronick is the 2013 Lupus Ambassador for the Lupus Foundation of Minnesota. She was diagnosed with lupus in August 2010.
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Comments

  1. Laurie  January 9, 2017

    I have been through 3 flares while being undiagnosed. I am currently in the midst of my 3rd flair and will see my rheumatologist tomorrow morning. It has taken 9 years to get this close to a diagnosis. I have know something was very wrong for a long time, but I had a horrible time getting doctors to take my symptoms seriously. My immune system didn’t function much at all during 2013, and I had a complicated UTI that required IV antibiotics. I was sick for a year. The anxiety and worry I experienced in 2013 have cause me to have health related PTSD. I have generalized anxiety disorder, so I have been learning tools from a therapist, to help me deal with my anxiety.
    In 2013, I was so sick I believed I was dying. My mind took me to some very scary, dark places. I still struggle with anxiety, but I am in a much stronger place mentally this time. I will do anything to stay healthy, but I have much to learn about how to do that. I hope I can thrive, and do much better once I have a diagnosis, and the care of a good rheumatologist

    reply
  2. Adela  February 8, 2017

    I was diagnosed with Lupus last year. Since then my life has changed. I can’t do things that I used to like working, laundry, cleaning my house, etc. If I do, I have to pay the consequence after by resting two or three days in bed. I had to quit working; the stress was making my flares even worse.

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  3. Lupus Foundation of Minnesota  February 15, 2017

    Adela, thank you for sharing your experience. If you’re interested in learning more about lupus and living well with the disease, we have some webinars available that you can watch at your convenience (http://www.lupusmn.org/support-education/webinars/). Topics include lupus fatigue, pain and stress management, and more.

    Additionally, if you’re in Minnesota or the surrounding area, we also have Support Groups (http://www.lupusmn.org/support-education/support-groups/) and free educational programs (http://www.lupusmn.org/calendar/) available that may be helpful with your lupus journey.

    We hope these resources are helpful!

    reply
  4. Mireille Lang  February 23, 2017

    I was diagnosed with lupus in 2005 when I was 38. I had to insist with my doctor that something was seriously wrong with me. He attributed my fatigue to being a mother of 3 young children. It was a scary time with the pain, the indescribable fatigue and the pain in my hands that cleaning and holding things made difficult. I felt like I was living in a different world from the people around me but still I tried to keep on going. My pain and fatigue were so visible that a friend from church who practiced Tui Na (Chinese deep tissue massage) asked to let her help me. I tried a massage and it was life changing for me. I have kept at it got all these years. It took me from a place where the disease was controlling my life to a place where the disease was a part of my life that I could manage. My family and friends were amazed at the transformation after my initial 7 treatments. It did not take Lupus away but made it a second thought, so to speak. I was able to re-engage in life. My husband said it was nice to have his wife back!

    We since moved to Canada so I had to find a new Tui Na practioner. It was hard leaving mine behind because she was so incredible, but I found a good one here and I have been back to work full time for 2 years. It is a bit much, but I could not find a part-time one where I live now. I still have my bad days and flares but I know where to go to keep them under control.

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    • Lupus Foundation of Minnesota  February 23, 2017

      Mireille, thank you for sharing your experience with us. We’re happy to hear you advocated for your health and found a treatment that helps you live well with lupus. We wish you all the best as you continue to juggle little ones, work, and life with lupus!

  5. Linda  March 8, 2017

    I am having flares that I did not have in the past. Aches all over my body. No energy. Rashes on my arm, back and chest. Just discovered a sore outside the vaginal area. I feel like I’m falling apart. I go to my Rhemy dr next week, but I also am going to make an appt with an Endocrinologist. Any suggestions?

    reply
    • Lupus Foundation of Minnesota  March 8, 2017

      Hi Linda,

      Thank you for reaching out to us. While we are not medical professionals, you may want to talk directly to our Director of Education Sandy Parnell at 952-746-5151/800-645-1131, ext. 105. She can likely walk you through questions to ask and/or connect you with additional resources.

  6. Joe  March 28, 2017

    Hello,

    I am 49 yr. old male who has been suffering for years with I believe is an autoimmune disease. My family doctor tells me I have a autoimmune disease by the symptoms but the RA doctor tells me I don’t have anything. I have the rash on my cheeks often. I have bouts of being extremely tired with pain in my wrists and ankles. I also suffer from a lot of muscle pain. Some days all my bones hurt extremely bad and every joint feels like its on fire. When I wake up in the morning or during the night my fingers especially are stiff and hurt to move. Other joints are stiff also but not as bad. I also get open sores on my face not to big as long as I treat them with antibiotic creams immediately. I have days when it feels like a wave runs through my whole body of tiredness and then I’m done for a day or two. I am so done with being told so many different things.

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    • Lupus Foundation of Minnesota  March 29, 2017

      Joe, we can certainly understand your frustration. Lupus is known as the Great Imitator because it mimics other diseases, so a diagnosis of lupus can take months or even years! Keep seeking answers. If you’d like to learn more specifically about lupus, contact us at 952-746-5151/800-645-1131 and chat with our Director of Education, as she can provide you with some resources and identify doctors if you live in Minnesota.

      Because you mentioned joint pain, we have a few resources that may be particularly useful and help you better manage the pain you may be experiencing:

      Interconnections: Stress, Pain and Health (https://youtu.be/bw4vzRAI38s)
      Protect your joints in the face of lupus pain and inflammation (https://goo.gl/RkpPLo)

      We hope these resources provide some relief, Joe, and we wish you all the best as you navigate this journey. And again, if you have any questions, don’t hesitate to contact us!

  7. Ana Alvarez  March 28, 2017

    My daughter died at the age of 28yrs old after battling with lupus 12yrs. Now I was diagnosed Lupus two yrs ago at the age of 60 I was shocked. I couldn’t believe it! I get a lot of pain on my legs and been in hospital a few times with bad anemia and fatigue. I wish they find a cure!

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    • Lupus Foundation of Minnesota  March 29, 2017

      Ana, thanks for connecting with us and sharing your story. We’re so sorry to hear about your daughter’s lupus battle! Lupus is such a devastating disease and it can strike anyone, regardless of age. More research is giving us hope for better treatments and a cure, but until then, we try to provide education and resources for those living with lupus so they may learn how to manage living well with the disease.

      You specifically mentioned suffering from pain and fatigue. We have a few resources that might be of interest for you that highlight ways to manage these symptoms:

      Interconnections: Stress, Pain and Health (https://youtu.be/bw4vzRAI38s)
      Lupus Fatigue: Fact or Fiction (http://youtu.be/JUeLieRWPCQ)
      Protect your joints in the face of lupus pain and inflammation (https://goo.gl/RkpPLo)

      We wish you all the best as you manage living well with lupus. And if you have any questions, don’t hesitate to contact us!

  8. Kristy  March 29, 2017

    I’ve recently been diagnosed with lupus. I had so much energy before. I could go off of 4 hours of sleep and work 11 hour shifts and everything just change. My hands ached and my bones. I get terrible migraines. I’m so very tired after just working three hours. I get dizzy spells and I’m a zombie. And it takes forever for me to get well after getting a cold or flu. I don’t know what to do. My doc sent me to a specialist but she said that my bloodwork is showing that the lupus is below percentage for medical treatment . What can I do to manage this if my doc won’t treat me yet?

    reply
    • Lupus Foundation of Minnesota  March 30, 2017

      Kristy, we hear your frustration! Lupus is a major life curveball. As we are not medical professionals, we’re unable to provide medical advice, but we can point you to different doctors, support groups, and resources if you live in the Twin Cities or Minnesota area. Contact our office at 952-746-5151/800-645-1131 and we’ll connect you with our Director of Education who’d be happy to talk to you further about who to seek out, what questions to ask, etc.

      In the meantime, here are some resources that may help you learn how to manage the pain and fatigue you experience:

      Interconnections: Stress, Pain and Health (https://youtu.be/bw4vzRAI38s)
      Lupus Fatigue: Fact or Fiction (http://youtu.be/JUeLieRWPCQ)
      Protect your joints in the face of lupus pain and inflammation (https://goo.gl/RkpPLo)
      Managing lupus symptoms through health eating (https://goo.gl/E48onx)

  9. Joe  March 31, 2017

    Hello,

    Thank you for the response I really appreciate it. I have scheduled an appointment with a autoimmune disease doctor at University At Penn for next month. I am very nervous about the visit because I am afraid they are going to say they see nothing wrong with me. This past week I feel like I was hit by a train! My body is aching all over and the pain in my ankles and wrists is unbelievable. I have no appetite and am exhausted. I have no energy and have also 2 small sores that showed up on my face. I cannot believe how things have changed for me. I was a very outgoing person who lately just wants to sit in the house. Anyway I don’t want to moan to you guys…… You guys have a great day!

    Joe

    reply
  10. Carla  April 21, 2017

    I was diagnosed with Lupus in 2006. I get Benlysta infusions and for the last 2 years have actually felt like a normal person. Only very small flares until recently. My joint pain currently is worse than it’s ever been. I finally got into the dr today and had blood work done and my sed rate is well within the normal range.

    In the past when I had flares, my sed rate would go up. So, I wonder if my pain is due to something other than a lupus flare, or can you have a flare without your sed rate going up? I haven’t gotten to talk with my dr since getting my test results. I just got them thru an online portal.

    reply

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