August 17, 2017

Lupus


Here’s a free collection of resources about lupus- Lupus blogs, videos, support groups, first-hand experiences and advice from people who have lupus, etc.

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Lupus Blogs

Here’s a list of lupus blogs- blogs written by people with lupus, or about lupus.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Lupus Foundation of America lupus.org 2017
Molly’s Fund Fighting Lupus mollysfund.org 2017
The Lupus Initiative thelupusinitiative.org 2017
Lupus Research Alliance lupusresearch.org 2017
CDC Resources cdc.gov/lupus 2017
Lupus Foundation of Southern California lupussandiego.com 2017
Lupus Canada lupuscanada.org 2017
MedlinePlus Resources medlineplus.gov/lupus 2017
Office On Women’s Health womenshealth.gov/lupus 2017
Despite Lupus despitelupus.blogspot.com 2017
Lupus Chick lupuschick.com 2017
Lupus and Humor lupusandhumor.blogspot.com 2017
Sometimes It Is Lupus sometimesitislupus.com 2017
Lupus and Me lupus-and-me.blogspot.com 2017
Mary’s Page: Living With Lupus maryspagelivingwithlupus.blogspot.com 2017
Make Lemonade With Lupus makelemonadewithlupus.blogspot.com 2017
Getting Closer To Myself gettingclosertomyself.blogspot.com 2017
You Can’t See Lupus youcantseelupus.blogspot.com 2017
Lupus Research Institute lupusresearchinstitute.org 2016
Lupus Hope lupushope.blogspot.com 2016
Mrs. Lupus mrslupus.blogspot.com 2015
Lupus In Color lupusincolor.blogspot.com 2015
Tiffany and Lupus tiffanyandlupus.com 2015
Paleo For Lupus paleoforlupus.blogspot.com 2014
Juju’s Lupus jujuslupus.blogspot.com 2014
The Lady With Lupus theladywithlupus.blogspot.com 2014
Lupus..so what now? lupussowhatnow.blogspot.com 2011
Living Well With Lupus livingwellwithlupus.blogspot.com 2010

Lupus Support Groups

Lupus Support Groups On Facebook

  1. Lupus Warriors (11,329 members)
  2. Lupus Warriors SLE Support Group (6,307 members)
  3. A World of Loving Lupies- A Lupus Community For All (4,564 members)
  4. SLE/Lupus Support Group Malaysia (2,661 members)
  5. Lupus Association South Africa (2,386 members)
  6. Lupus & Autoimmune Disease Awareness and Sharing (1,862 members)
  7. Lupus Friends & Family (1,706 members)
  8. Lupus/Fibromyalgia Warriors Support Group (1,601 members)
  9. Lupus Support Group (1,106 members)
  10. Lupus Buddies (980 members)
  11. Binding Up Lupus (921 members)
  12. Living With Lupus (882 members)
  13. The Lupus Effect (691 members)
  14. House of Lupies (559 members)
  15. Lupus Warriors United 2016 (555 members)
  16. Talking About Lupus (489 members)
  17. Lupus Awareness & Prayers For A Cure (424 members)
  18. I Support Lupus (389 members)
  19. We Are Info-Sharing Lupies (379 members)
  20. Lupus/Lupies Group (296 members)
  21. Friends & Loved Ones Of Lupus Australia (285 members)
  22. Lupus Support Australia (278 members)
  23. Men With Lupus (247 members)
  24. I am spreading Lupus awareness (208 members)
  25. Lupus Warriors – Hope Through Awareness (94 members)
  26. MS, Lupus & Me Group (91 members)
  27. Lupus Facebook Group (80 members)
  28. Lupus- Disease With A Thousand Faces (78 members)
  29. Lupus, SLE (70 members)
  30. Lupies With A Positive Mindset (60 members)
  31. Lupus in the Family (57 members)
  32. Living With Lupus (27 members)

Other Lupus Support Groups And Forums

  1. Daily Strength Chronic Fatigue Syndrome Support Group (896 members, 7,002 posts)

Lupus Survey

We’re surveying people about their experiences with lupus. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with lupus**


Lupus Symptoms

What symptoms have you experienced?

  • Muscle pain. (Cristal, 18 years old)
  • Malar rash, itching, blisters on arms, massive hair loss, pleurisy, costochondritis, cardiac involvement, joint pain, sjogrens, mouth ulcers, skin lesions on finger tips, extreme fatigue, swelling of face hands and feet, chronic shingles, dry flaky skin that comes off in large patches, photo sensitivity. (Cheyenne, 21 years old)
  • Swollen and stiff/sore muscles, severe back and leg pain, an awful skin rash that won’t seem to go away, tiredness and depression. (Niakia, 21 years old)
  • I have had 300 blisters all over my body, joint pain, blood ulcers in my mouth, high blood pressure, high blood sugar, swelling of joints and muscles, red rashes, my legs turning purple, headaches, weight gain, loss of proteins in my kidneys. (Kellie, 22 years old)
  • Joint pain, mouth sores, fatigue, fevers, brain fog. (Jo, 25 years old)
  • Fatigue, joint pain and swelling, low grade fever, malar rash. (Nicole, 25 years old)
  • Fatigue, kidney issue, infections, chronic pain. (Sonny, 25 years old)
  • Loss of hair, insomnia. (Ammie, 26 years old)
  • Butterfly and chest rash, high blood pressure, lupus nephritis, fatigue, joint pain, seizures, tachycardia, severe back pain, anxiety, hypersensitivity in nerves, eye damage, pleurisy, randomly losing vision for short periods of time. (Breanna, 26 years old)
  • Fatigue, joint pain, hand/foot issues. (Kaylynn, 26 years old)
  • Chest pain, fatigue, joint pain, depression, anxiety. (Chris, 29 years old)
  • Joint pain, headache, vomiting , weakness, low blood level, latrine, hair loss, butterfly rashes, mouth ulcer, gastric, burning body pain. (Deepika, 29 years old)
  • Inflammation and multiply organ damage. (Taja, 29 years old)
  • Rash, itching, swelling of muscles and joints, hair loss, mouth ulcers, itchy eyes, I’ve had chest pains (pericarditis) brought on by lupus which is shortness of breathe and burping quite a lot,miscarriages. (Emma, 31 years old)
  • Miscarriage..hair loss..bruising..fms…massive body ache…inflammation in my eyes…many more. (Larissa, 31 years old)
  • Intestinal inflammation, pericarditis, myocarditis, inflammation of joints, joint pain, headaches, skin rashes, hair loss, nail abnormalities, fatigue, muscle pains. (Nienke, 32 years old)
  • Joint pain and tiredness. (Tonya, 32 years old)
  • Joint pain and swelling, fatigue, oral lesions. (Donald, 35 years old)
  • Loss of the skin, hair loss, face damage. (Kara, 35 years old)
  • Joint pain, fatigue, headaches, muscle cramps, itchy skin, inflammatory body, light sensitive, sound sensitive, psychic symptoms (despair, suicidal thoughts, anxiety attack, panic attack, sadness). (Nete, 37 years old)
  • Lots of falling, vomiting and fluid on heart and lungs. (Tonya, 37 years old)
  • Chronic pain, swelling, nerve damage, excess migraines, rash. (Jonetta, 38 years old)
  • Joint pain….migraines…heart palpitations…ANXIETY…pain….cold fingers and toes…dry eye. (Tara, 38 years old)
  • Pain, fatigue, joint pain and swelling, rashes, ulcers in my mouth and nose. (Amanda, 39 years old)
  • Headache, dizziness, fatigue, memory loss, pain in Right hand, shoulder pain, unexplained abdominal pain, unexplained yawning, chest pain, sun sensitivity, mouth sores, nose sores (inside and out), facial redness, depression, rib pain, muscle spasms, hallucinations. (Anonymous, 39 years old)
  • Joint pain, rash, itchiness, hair loss, muscle pain, exhaustion, arthritis, RLS, IBS, anxiety, depression. (Kristy, 39 years old)
  • Fever, pain, high blood pressure, anxiety, depression, different color on my skin, rash. (Missy, 39 years old)
  • Major skin issues, purpura and paper thin skin, lupus butterfly rash and lupus rash on forearms and fingers. Severe joint pain… mainly hips. Severe muscle pain and weakness most constant in legs. Severe daily fatigue and pain that has been so bad I cannot move or talk at its worst. Before I was diagnosed I was housebound for about eighteen months because I was so sick and in pain. I couldn’t even take care of myself. Taking a shower or even getting to the restroom was so difficult and excruciating I barely managed it. Leg weakness has been so bad at times that I cannot stand and I have to put myself on the floor and crawl to the bed. Confusion and brain fog from disease and medicine comes and goes. My creatin level has stayed at 1.2 for over four years now and before diagnosed I was in the beginning stages of kidney failure. I am now considered to be in chronic kidney disease stage two. I have had shingles twice and also pleurisy. Still have pleurisis since I had pleurisy. I have Raynauds syndrome secondary to lupus. (Sarah, 39 years old)
  • Muscle and joint aches, shortness of breath, fatigue, swollen joints, hair loss. (Kawanna, 40 years old)
  • Swelling of the joints, pain all over, rashes on my legs, fatigue. (Angel, 43 years old)
  • Joint pain, joint swelling, fatigue, lack of appetite, insomnia, headaches, memory loss, brain fog, hair loss, rashes, hair loss. (Marian, 43 years old)
  • Joint pain, fatigue, mouth ulcers, hair loss, anemia, brain fog. (Vanessa, 43 years old)
  • Muscle, joint and tendon pain, fatigue, fingers swelling and stiffening, arthritis, liver problems, Sjögren’s syndrome, Raynauds, fibromyalgia, low grade fevers, canker sores, ibs, migraines, major bruising. (Melissa, 45 years old)
  • Lupus (S. L. E.), ASTHMA, osteoporosis. (Samira, 45 years old)
  • Butterfly rash, joint pain, swelling, mouth sores, nose sores, headaches, interstitial lung disease, eye sight damage, fever, fatigue, body aches, heat sensitivity, sun sensitivity, sleep disturbances, memory loss. (Angel, 48 years old)
  • Chronic fatigue, kidney involvement, CNS involvement, joint pain, hives and mouth ulcers. (Laura, 49 years old)
  • Fatigue, lots of pain, swollen joints, insomina and heartburn just to name a few. (Colleen, 50 years old)
  • Joint pain and swelling, rashes, discoid lesions, nephritis, sun sensitivity, nausea, vomiting, avascular necrosis, headaches, weight gain and loss, forgetfulness, mood swings, hair loss (I am sure I am missing many). (Sally, 50 years old)
  • Aches and pain all the time. (Stacy, 51 years old)
  • Joint and muscle pain, feeling so tired all the time, light sensitivity rash on arms, malitivity on face, oral sores, reduced cognitive ability, shockingly bad memory, vitiligo and pernicious anaemia. Probably more, but I can’t remember right now! (Pamela, 52 years old)
  • Multiple symptoms that are too long to list. (Roselle, 53 years old)
  • All of them. (Cathy, 54 years old)
  • Joint pain, low platelet and WBC count, oral ulcers, headaches. (Susan, 54 years old)
  • Mylar rash, extreme reaction to minimal sun exposure, headaches, cramping, muscle aches and pains, joint pain, daily mild fevers. (Niall, 56 years old)
  • Fatigue, aches/pains, headaches, Raynauds, low grade fever, sweats, stomach trouble, neuro symptoms, depression, insomnia. (Mark, 57 years old)
  • What symptoms have I not experienced! (Cindi, 58 years old)
  • I could write a book. (Janet, 58 years old)
  • Fatigue, rash, joint pain are most common for me. AVN requiring bilateral hip replacement. (Kerry, 58 years old)
  • Tiredness aching, hurting all over. (Linda, 61 years old)
  • Neuro, bone and joint pain, eye sight, bladder, teeth, feet etc. (Kandyce, 64 years old)

Lupus Flare Ups

What causes your lupus flare ups?

  • My episode. (Cristal, 18 years old)
  • The sun, stress, alcohol, too much activity. (Cheyenne, 21 years old)
  • Not really sure yet, I have just been recently diagnosed. (Niakia, 21 years old)
  • Stress and the sun that I can narrow down now. (Kellie, 22 years old)
  • Stress, too much physical activity, not taking medication. (Jo, 25 years old)
  • Stress, heat, cold. (Nicole, 25 years old)
  • Don’t know. (Sonny, 25 years old)
  • Stress, tapering off of medications, allergic reactions, infections. (Ammie, 26 years old)
  • Sun exposure without sunscreen, stress. (Breanna, 26 years old)
  • Stress. (Kaylynn, 26 years old)
  • Emotional distress. (Chris, 29 years old)
  • Still my lupus has not flarred up. (Deepkia, 29 years old)
  • Everything😷😭😭😭. (Taja, 29 years old)
  • Nothing or sometimes stress, being in the sun. (Emma, 31 years old)
  • Sun..stress. (Larissa, 31 years old)
  • Stress, sleeplessness, viral infections. (Nienke, 32 years old)
  • Sun and stress. (Tonya, 32 years old)
  • I’m in a constant state of flare. (Donald, 35 years old)
  • The Sun. (Kara, 35 years old)
  • Stress and over achievements. (Nete, 37 years old)
  • Hot and cold weather. (Tonya, 37 years old)
  • Sun, beef, excess exercise, lack of sleep, stress. (Jonetta, 38 years old)
  • My time of the month…sun… over exertion. (Tara, 38 years old)
  • Stress, weather. (Amanda, 39 years old)
  • Sun exposure, fluorescent lights, stress. (Anonymous, 39 years old)
  • Stress, a lot of sun exposure, over doing it. (Kristy, 39 years old)
  • I don’t know. So far I believe it’s stress. (Missy, 39 years old)
  • Stress, sun exposure, not balancing activity properly and overdoing things causes flares that can last for months. Illness or colds can also cause flares. (Sarah, 39 years old)
  • Stress, heat, foods. (Kawanna, 40 years old)
  • Unknown. (Angel, 43 years old)
  • Infections, sun exposure, UV lighting, over doing it. (Marian, 43 years old)
  • Hormonal imbalance, sun. (Vanessa, 43 years old)
  • Illness. (Melissa, 45 years old)
  • Anything, sun, stress, medicine. (Samira, 45 years old)
  • Stress, being ill, mostly unknown. (Angel, 48 years old)
  • Stress, trying to do to much, being out in the sun, and when I get sick. (Laura, 49 years old)
  • Stress and don’t know the other cause. (Colleen, 50 years old)
  • Sun. Stress. Fatigue. Diet. Over activity. (Sally, 50 years old)
  • Walking too much or eating wrong food. (Stacy, 51 years old)
  • Stress, sleep deprivation, artificial food, my boss (comes under stress I assume)! (Pamela, 52 years old)
  • I really don’t know. (Roselle, 53 years old)
  • Sun. (Cathy, 54 years old)
  • Extreme stress, lack of rest. (Susan, 54 years old)
  • Sun, uv exposure, over physical exertion, stress- often for no apparent reason. (Niall, 56 years old)
  • Stress, working too many hours, sun exposure. (Mark, 57 years old)
  • Stress. (Cindi, 58 years old)
  • Foods and pushing myself to hard. (Janet, 58 years old)
  • Sun, stress. (Kerry, 58 years old)
  • Water not filtered, yellow dye in food or soap/shampoo. (Linda, 61 years old)
  • The least amount of stress. (Kandyce, 64 years old)

Lupus Facts

What are some interesting facts about lupus?

  • It’s hard to figure it out from blood or urine test. (Cristal, 18 years old)
  • There is no definitive testing for lupus. Another interesting fact is that some lupus patients like myself can have a positive Ana and anti-smiths at one point and then months later test negative for it and continuously bounce back and forth between positive and negative. (Cheyenne, 21 years old)
  • It doesn’t really start to show until 15-20 years of age. (Niakia, 21 years old)
  • Lupus is a disease that I feel we will all be learning new things about every day. (Kellie, 22 years old)
  • We never got bitten by a wolf. (Nicole, 25 years old)
  • I’ll out work any able bodied if given the chance. (Sonny, 25 years old)
  • Lupus is less common in men, but they tend to experience intensified symptoms. (Breanna, 26 years old)
  • Everyone’s lupus is different. (Kaylynn, 26 years old)
  • Lupus affects more women than men. Most people do not understand, or comprehend lupus. (Chris, 29 years old)
  • Hair loss, butterfly rashes. (Deepika, 29 years old)
  • It happens to way more woman than men. (Taja, 29 years old)
  • There are different forms of lupus some server some not so, for a woman(for me) about 2 weeks before a menstrual cycle, I become more in pain and swell more. Lupus is harder to detect and can mimic other illnesses and can be misdiagnosed. Lupus patients can carry children. I have but we still are higher risk of miscarriages which I also have had. (Emma, 31 years old)
  • It’s different for every individual, sometimes lupus can show up in your blood work, but will have no symptoms whatsoever. (Nienke, 32 years old)
  • It is different for everyone. (Tonya, 32 years old)
  • Lupus isn’t just a ‘woman’s’ disease. Men of all ages and ethnicities are affected by Lupus. (Donald, 35 years old)
  • You mostly tired all the time. (Kara, 35 years old)
  • That none of us (lupus patients) are the same but still we understand each other and help each other. (Nete, 37 years old)
  • Major life changes with yourself and your family. (Tonya, 37 years old)
  • It has taught me a lot about myself and my limits and how to say no. (Jonetta, 38 years old.
  • No cure…everyone has different symptoms. (Tara, 38 years old)
  • Lupus has shown me how strong I am. It’s also shown me just how little people really know about Lupus. (Amanda, 39 years old)
  • Nothing really helps, and no one believes that it’s real. (Anonymous, 39 years old)
  • None… I hate this. (Missy, 39 years old)
  • It has changed my life completely. I had to change everything from constant doctors’ appointments to extensive medications. Every action in daily life must be weighed in how much it will affect my health later to the fact that I am now disabled and cannot function daily like I did in my life before illness. I have been through the stages of grief that are associated with the acceptance of being chronically ill and I live in the acceptance stage where I am positive and happy through all of these life changes. Everything revolves around balancing the illnesses themselves and medications and side effects to it all. (Sarah, 39 years old)
  • Consistently inconsistent. (Kawanna, 40 years old)
  • It sucks, and it’s an expensive disease. (Angel, 43 years old)
  • How it affects everyone differently. (Marian, 43 years old)
  • The diversity of the disease. 90% affected are female. (Vanessa, 43 years old)
  • It could mimic other things that you don’t have or give you illnesses. (Samira, 45 years old)
  • It is so individualized. (Angel, 48 years old)
  • They call it the disease of a thousand faces. Most people who have lupus also have other serious diseases or conditions like fibromyalgia or sjogrens or irritable bowel syndrome. (Laura, 49 years old)
  • It’s a pain in the butt disease as it mimics so many others. (Colleen, 50 years old)
  • Each of it’s victims is different. Treatment has improved over 20 years but has a long way to go. (Sally, 50 years old)
  • The pain. (Stacy, 51 years old)
  • Lupus can manifest anywhere it chooses to, but most doctors don’t treat it as a systemic illness. (Pamela, 52 years old)
  • Unpredictable. (Roselle, 53 years old)
  • Exercise and eating healthy help. (Susan, 54 years old)
  • Men can get it too! Exposure to silica dust is suspected to cause lupus, RA, etc. (Niall, 56 years old)
  • So many symptoms. (Mark, 57 years old)
  • Lupus is eating my Bone Marrow and I had both Hips replaced from Avascular Necrosis and more…(Cindi, 58 years old)
  • It has effected all most every organ and system of my body. (Janet, 58 years old)
  • Males, like me, are 1/10 of those afflicted. (Kerry, 58 years old)
  • You never know from minute to minute how your going to feel. (Linda, 61 years old)
  • That it can cause such a variety of symptoms. (Kandyce, 64 years old)

Lupus Pain Management

What’s your experience with lupus-related pain and pain relief?

  • Lupus pain… it’s hard for me to do stuff and with pain relief I’m able to be free. (Cristal, 18 years old)
  • I have yet to find adequate pain relief from lupus but I am hopeful. (Cheyenne, 21 years old)
  • When my hands swelled so bad I couldn’t even bend them. I haven’t really found relief, I’m in pain everyday. (Niakia, 21 years old)
  • There are a lot of random pains in my joints due to lupus. (Kellie, 22 years old)
  • Steroids work best. Doctors refuse to give opioids – good luck if you need them. (Jo, 25 years old)
  • Currently getting TPIs and taking a muscle relaxer as well as Motrin. (Nicole, 25 years old)
  • Narcotics unfortunately, hate Prednisone. (Sonny, 25 years old)
  • Not much experience. (Ammie, 26 years old)
  • Hot bath, light exercise, such as swimming or yoga, that is better on the joints. (Breanna, 26 years old)
  • Takes months for the medicines to actually work.  (Kaylynn, 26 years old)
  • There is no pain relief. No medications. The pain is daily and will not end. (Chris, 29 years old)
  • I am totally speechless, I can’t explain, only I can feel it it is horrible. (Deepika, 29 years old)
  • On a normal day, I’m at a 5. Pain medicine doesn’t do anything after I certain point. (Taja, 29 years old)
  • Swelling of muscles and joints stiffness. It could come on in the morning, anti-inflammatory drugs do help and painkillers and a whole lotta other drugs. (Emma, 31 years old)
  • I’ve tried swimming..kinesio tapping..canabis..many more. (Larissa, 31 years old)
  • Pain is daily and varies from good to handle, to not manageable with pain medication. For pain relief: ibuprofen, paracetamol, tramadol. (Nienke, 32 years old)
  • Sleep. (Tonya, 32 years old)
  • Join pain in my hips left an right unless pain relief  was taken… Norcode. (Kara, 35 years old)
  • A lot of pain and not a lot of relief. (Nete, 37 years old)
  • Lots of pain medication. (Tonya, 37 years old)
  • It’s chronic and never ending, almost nothing but cannabis cures the pain. (Jonetta, 38)
  • Horrible and basically none!! (Tara, 38 years old)
  • My pain level is stronger than most people’s. The normal scale doesn’t really apply to me and others with Lupus. Pain relief has been hard. 90% of doctors and others look at us as “DRUG SEEKERS”. (Amanda, 39 years old)
  • Being doubted all of the time and made to feel that it is all in my head. (Anonymous, 39 years old)
  • I have yet to find anything that takes all the pain away. I’m on anti-inflammatories and prednisone. (Kristy, 39 years old)
  • Depression. Pain. Tired. Anxiety. (Missy, 39 years old)
  • Lupus pain for me is mainly joint and muscle. I have been in pain management for almost two years and take pain medicine daily and get radio frequency procedures four times a year that burn the nerves connected to the hip joints. Between the daily medications and the procedures, it is has made my daily pain management much better. I still have many days where the pain is not under control but I know that’s just the reality of my illnesses. (Sarah, 39 years old)
  • It comes and goes when it pleases….no remedy for pain relief. (Kawanna, 40 years old)
  • I don’t get any pain relief. (Angel, 43 years old)
  • I have off and on days of extreme pain and then medium sized pain. (Marian, 43 years old)
  • Not many pain relievers work well. Pain never stays controlled for long. (Vanessa, 43 years old)
  • I haven’t found much relief from medications. Most of my relief comes from heating pad and rest. (Melissa, 45 years old)
  • Healthy food and exercise helps. (Samira, 45 years old)
  • Vioxx is the only medication that has been effective in treating my pain. However, it was taken off the market. (Angel, 48 years old)
  • It seems that as the years pass the pain is getting harder to cope with. I take Percocet to help control it. (Laura, 49 years old)
  • Hate the constant pain and sometimes my pain meds just don’t work on it. (Colleen, 50 years old)
  • Nothing relieves the pain. Narcotics are hard to come by and do not fix the pain but can mean the difference of being able to get out of bed and going to work versus laying in bed all day. The worst is the pain that is so deep everything in that area hurts. It is incredible. (Sally, 50 years old)
  • I can’t find any that work. (Stacy, 51 years old)
  • Pain meds make me softer in the head than I already am, so use paracetamol, SR Naproxen, heat, aromatherapy, sleep and anything else that may be suggested (within reason). (Pamela, 52 years old)
  • My pains are really bad right now. I can’t control my bladder. It seems it’s always full even though I just went to the bathroom. (Roselle, 53 years old)
  • It’s hard to function. (Cathy, 54 years old)
  • I use Tylenol Arthritis PRN. (Susan, 54 years old)
  • It hurts muscle, and there’s bone pain that meds don’t touch. (Niall, 56 years old)
  • Pain medications do not seem to help me much. (Mark, 57 years old)
  • Tried Hydrocodone long while…stopped working…Meditation Works. (Cindi, 58 years old)
  • Daily pain, narcotics have no affect on my pain. (Janet, 58 years old)
  • Only take pain relief when really bad. (Kerry, 58 years old)
  • It’s almost impossible to stop the pain. When in pain, you don’t sleep. (Linda, 61 years old)
  • Pain relief? What’s that? (Kandyce, 64 years old)

Lupus Difficulties

What are the hardest aspects of living with lupus?

  • The medicine that doctors prescribed me and which causes my organs to be damaged. (Cristal, 18 years old)
  • The hardest aspect of lupus is wanting to keep up with everyone around me and my body not allowing me to do so. I am a very driven person emotionally but physically it’s impossible. (Cheyenne, 21 years old)
  • Not being able to enjoy the outdoors like I want to and the constant body pain. (Niakia, 21 years old)
  • Not being able to live the life I used too, by not being able to be in the sun and having a lot less energy. (Kellie, 22 years old)
  • Pain, people not understanding what you’re going through. (Jo, 25 years old)
  • Giving up garlic and being in the sun. (Nicole, 25 years old)
  • Fatigue and the mental aspects. (Sonny, 25 years old)
  • Daily functions, relating to others. (Ammie, 26 years old)
  • You could have a random flares and need time off of work, but they don’t understand it or why you need so much time to recover. Pregnancy is automatically high-risk and if your medicines aren’t changed quickly enough, it can be very dangerous for the baby. (Breanna, 26 years old)
  • Not being able to do things I was able to do before being diagnosed, family and friends not understanding. (Kaylynn, 26 years old)
  • Family. They distance themselves and expect you to be “normal”. Also living with the knowledge that my organs will fail me. (Chris, 29 years old)
  • Living with pain and burning. (Deepika, 29 years old)
  • Having to stop working. (Taja, 29 years old)
  • Being tired all the time, the pain is sometimes unbearable being short of breathe all the time too. (Emma, 31 years old)
  • Tired every day..body aches..bruising…hair loss..hot body temperature. (Larissa, 31 years old)
  • The fatigue and the pain. (Nienke, 32 years old)
  • Energy change. (Tonya, 32 years old)
  • I am career military, and losing my career is the hardest part. I am no longer fit for duty after 18 years. (Donald, 35 years old)
  • Not being able to go out into the Sun light and always tired. (Kara, 35 years old)
  • Accepting that this is me now. My fatigue is the hardest part and the pain and psychological aspect too. (Nete, 37 years old)
  • Lots of things you can’t do. (Tonja, 37 years old)
  • Getting others to understand what I am dealing with and losing family/friends. (Jonetta, 38 years old)
  • Not being able to have the career I loved 🙁 (Tara, 38 years old)
  • The hardest part of living with Lupus is being a mother and wife. Trying to stay strong for my family keeps me going. (Amanda, 39 years old)
  • Honestly that people think I’m faking it to get out of things. (Kristy, 39 years old)
  • Pain, sadness, anxiety. (Missy, 39 years old)
  • My life is 100% different now. Every activity or non activity is a balancing act. I feel like a burden. I feel like I let people down. I feel like I cannot live up to my expectations and responsibilities I should be able to as a confident and productive human being. I feel like I do my best but in reality I know that I could be so much more but I have no hope that it will ever be the case. My life revolves around doctors and medications and always feeling not good enough. The pain and fatigue and ever looming possibilities of death and terrible parts that come along with lupus are always on my mind. I can’t be the mother I wish I could be because physically my body does not cooperate. My physical limitations govern my world. I have to try 500% more than a “normal” person to accomplish 10% of my goals. (Sarah, 39 years old)
  • Unpredictability. (Kawanna, 40 years old)
  • Day to day activities. (Angel, 43 years old)
  • Not being able to work and not being disabled enough to collect disability. The overwhelming feeling of guilt. (Marian, 43 years old)
  • Fatigue, pain, brain fog and not being able to find right words at times. (Vanessa, 43 years old)
  • No one understanding, doubting yourself, the drugs you take harming you in other ways. (Melissa, 45 years old)
  • Sleeping. (Samira, 45 years old)
  • The daily aches and pains, the unpredictable nature of the disease, but probably the worst is that you don’t look sick and the misconceptions others have about you and your illness. (Angel, 48 years old)
  • No longer being able to do so many of the things that I used to love doing. (Laura, 49 years old)
  • The pain and the restrictions it puts on your life. I can no longer spend a lot of time in the sun as it flares my lupus. (Colleen, 50 years old)
  • Never knowing what tomorrow will look like. Having missed huge gaps of my children’s lives. (Sally, 50 years old)
  • Pain can’t do what you use to. (Stacy, 51 years old)
  • Looking well and feeling like death! People don’t understand. (Pamela, 52 years old)
  • Can’t enjoy outdoor activities like walking out in the sun, shopping, support from my family which I don’t have support from them.  (Roselle, 53 years old)
  • Knowing when to stop doing the things I love because I’m in pain. (Cathy, 54 years old)
  • Lupus patients do not look sick but might feel awful. (Susan, 54 years old)
  • Going to work sore and tired, and coming home too exhausted to do much except rest, so you can go to work again tomorrow. I can’t not work- I need the insurance. I work in construction, mostly outside all year in Chicago. (Niall, 56 years old)
  • It has ruined my plans for retirement. Became a golf pro at age 50. (Mark, 57 years old)
  • Constantly trying to live with it while its destroying all aspects of my Life. (Cindi, 58 years old)
  • Not being able to do what I would like to do. (Janet, 58 years old)
  • Fatigue and trying to get others to understand what I am dealing with. (Kerry, 58 years old)
  • Not being able to get out in the sun nor have a normal life. (Linda, 61 years old)
  • I can’t travel to see my grown daughter and granddaughter. (Kandyce, 64 years old)

Lupus Advice

What encouragement/advice can you give others who have lupus?

  • Never give up, always find a way to be happy and laugh. (Cristal, 18 years old)
  • Take it one day at a time… you can survive just about anything for 10 seconds so if you’re overwhelmed, count to ten when you’re done. If you’re still overwhelmed, do it again and keep doing it until you get through it. It’s just a bad day and not a bad life… we have our good days… we just have to wait for them. (Cheyenne, 21 years old)
  • It’s not the end of the world, pray about your illness and keep a positive mindset/environment around you, and it’s okay to cry, sometimes that’s all you can do. (Niakia, 21 years old)
  • You have to look at every day as a new day. There is always something that is a little better or getting back to normal even if it is the smallest achievement take pride in that. (Kellie, 22 years old)
  • It is possible to feel better. (Jo, 25 years old)
  • Don’t overdo it. (Nicole, 25 years old)
  • You are a warrior. (Sonny, 25 years old)
  • It will change can one day! (Ammie, 26 years old)
  • Don’t be afraid to share every concern with your doctor. Find a doctor you are comfortable with – don’t be scared to switch doctors. Find what works for YOU; just because a certain medicine or treatment worked for other lupus patients does NOT mean it is right for you. (Breanna, 26 years old)
  • Beat lupus, don’t let lupus beat you. (Kaylynn, 26 years old)
  • See help immediately. Not just when you think you need it. Start now. Mental, dietary, medication- all the above is acceptable. (Chris, 29 years old)
  • If someone whose age is between 14 to 40 and suffering with joint pain , then they should consult with rheumatologist. (Deepika, 29 years of age)
  • Just keep pushing. (Taja, 29 years old)
  • Take your medication even if it is a pain at times. Whenever you feel a flare always go to hospital…it may feel mild but could be far worse…make sure you keep an eye on those mouth ulcers. I ended up in a coma because my tongue swelled and it’s very rare but still be careful…try do gentle exercises even if you are sitting down and never miss a doctor’s appointment… they are there to help. (Emma, 31 years old)
  • Have faith in GOD..take meds regularly..don’t give up..fight and be a winner. (Larissa, 31 years old)
  • Choose only to do things that give you joy and mental energy, and think carefully about every “spoon” you give. (Nienke, 32 years old)
  • Stay mentally strong. (Tonya, 32 years old)
  • It gets better. (Donald, 35 years old)
  • Keep the faith that you can over come Lupus and make the best of life… don’t let it make you. (Kara, 35 years old)
  • Lean on me and others in our society. Ask a lot of questions and give yourself time to heal inside. (Nete, 37 years old)
  • Plenty of rest if I can. (Tonya, 37 years old)
  • Never give up and learn to say no to things you don’t like or want to do. (Jonetta, 38 years old)
  • Don’t stop living but learn to be easier on your body. (Tara, 38 years old)
  • Listen to your body, you know you better. Find support and NEVER GIVE UP! You are a WARRIOR. You are going to have good days and bad. It’s okay to rest and listen to your body. You ARE enough.💜(Amanda, 39 years old)
  • You aren’t Lupus…you have to not let it get into your head. (Kristy, 39 years old)
  • God. (Missy, 39 years old)
  • Never give up. Fight daily. Do not beat yourself up or feel guilt for things you did not choose. Be your own best advocate. Follow doctors treatment plans and medication schedules. Stay positive for stress is our worst enemy. (Sarah, 39 years old)
  • Find a support group, eat healthy, rest as much as possible, journal, meditation, acupuncture, lots of self care. (Kawanna, 40 years old)
  • Get insurance however you can. (Angel, 43 years old)
  • Do your research. Find a doctor who listens. (Marian, 43 years old)
  • Get as much help as possible via OTs, medics, physio. Don’t suffer in silence. (Vanessa, 43 years old)
  • Life does get better. (Melissa, 45 years old)
  • Don’t give up! We’re LUPUS WARRIORS! (Samira, 45 years old)
  • You really only have 2 choices with Lupus…1. Lay around and wallow in self pity or 2. Get off your butt and live your life the best you can… do one day at a time! (Angel, 48 years old)
  • Find a good doctor who listens to you. Try to get as much rest as you can. Encourage your family and friends to learn about lupus. (Laura, 49 years old)
  • Just take one day at a time. (Colleen, 50 years old)
  • Hold on tomorrow might be better. Never waste a good day, take the day off, take the kids to the park, spend time with loved ones. (Sally, 50 years old)
  • Praying. (Stacy, 51 years old)
  • Don’t give up. There is always hope. Belong to as many groups as you can, because someone somewhere may just have the right answer to help you. NEVER stop asking questions and be heard…it’s your body. (Pamela, 52 years old)
  • Be strong and fight the Wolf inside your body. (Roselle, 53 years old)
  • Know your body. (Cathy, 54 years old)
  • Exercise, eat healthy and get lots of sleep. (Susan, 54 years old)
  • Avoid prednisone, if at all possible. (Niall, 56 years old)
  • None. My symptoms are not controlled. Get rest. (Mark, 57 years old)
  • Keep Moving!!!! After my fusion and graft from spondynolisthesis in my lumbar spine, I exercise using (low impact) light weights and a exercise Ball every night for 30-45 minutes…(Cindi, 58 years old)
  • Stay positive! Move every day! (Janet, 58 years old)
  • We can overcome! I have been able to work full time all my life (diagnosed at 14), and complete my education for a Doctoral degree. (Kerry, 58 years old)
  • Take one day at a time. Enjoy fully a good day then rest, rest, rest on bad days. (Linda, 61 years old)
  • Encouragement would be…well, you are still alive. Get tough because this disease is forever. (Kandyce, 64 years old)

Lupus Diet and Exercise

What’s been your experience with diet and exercise?

  • Nothing. (Cristal, 18 years old)
  • I try to eat healthy for the most part because my body just can’t tolerate processed foods like it used to… exercise I don’t do so well with because of my cardiac issues from lupus I’m pretty sedentary. (Cheyenne, 21 years old)
  • If you try and overdo it, it only makes things worse. (Niakia, 21 years old)
  • It is really hard to diet and exercise while having a flare up. But you need to or your weight and energy can slip away from you. Even if it’s a small walk around the house for 10 minutes. (Kellie, 22 years old)
  • Walk every day. Yoga hurts joints. Trying to go GF this month to see if it helps, and everybody tells me it’s just a fad…I want a cupcake. (Jo, 25 years old)
  • It’s rough on my joints. (Nicole, 25 years old)
  • Exercise can have some negative and positive. I eat fairly healthy and feel better. (Sonny, 25 years old)
  • Not much, I just go with the flow. (Ammie, 26 years old)
  • Exercise helps me cope with the disease overall, as long as I don’t overdo it. Swimming is one of the best exercises. No/low sodium diets have helped me get into and stay in remission. The more weight I gain, the more it tends to affect my joint pain. When I was smaller, it barely affected me. (Breanna, 26 years old)
  • None. (Kaylynn, 26 years old)
  • Both are hard. The best diet for lupus is low carb, but that means low energy and you already have low energy. Pain is sometimes too hard to exercise. (Chris, 29 years old)
  • It is really difficult for me to maintain my diet…I can’t do exercises. (Deepika, 29 years old)
  • Lack is energy. Constant nausea. (Taja, 29 years old)
  • I have been told to eat all sorts of food because I can’t put weight on and dairy too. I don’t do exercise but I do gentle movement to make sure my joints don’t stiffen (given this advice buy physiotherapy and consultants). (Emma, 31 years old)
  • I drink vegetable and fruit juice with aloe vera that I prepare by myself…steam lean meat and vegetables. (Larissa, 31 year old)
  • Maintaining a good physical condition and healthy weight helps with controlling the pain and fatigue. (Nienke, 32 years old)
  • Hard. (Tonya, 32 years old)
  • Still figuring that out. (Donald, 35 years old)
  • I haven’t dieted at all. (Kara, 35 years old)
  • I have changed my diet and exercise after my diagnosis and I am feeling a relief. I don’t eat gluten and lactose and try to stay away from sugar and alcohol. (Nete, 37 years old)
  • That hasn’t changed. (Tonya, 37 years old)
  • I eliminated red meat and took up walking when I can. (Jonetta, 38 years old)
  • Hard to exercise in pain. (Tara, 38 years old)
  • For me, it’s been hard. I do walk a lot when my body lets me. Diet is harder than anything because I try my best to eat things that my body needs. (Amanda, 39 years old)
  • Paleo helps somewhat. (Anonymous, 39 years old)
  • Stretching, cutting gluten, red meats, fried foods. (Kristy, 39 years old)
  • Haven’t started yet… just was told a month ago. (Missy, 39 years old)
  • Physical therapy was great for me. I am a huge proponent. I exercise as much as my body will let me. The stronger I can be in my best days the stronger I am on my worst days. Find a diet that works for you. Stay away from immune booster foods like alfalfa sprouts and garlic. Keep a healthy weight to prevent any extra issues that revolve around being overweight. (Sarah, 39 years old)
  • Just recently discovered the importance of it. (Kawanna, 40 years old)
  • Can’t exercise, and I only eat once a day. (Angel, 43 years old)
  • I have recurring thrush so my diet depends on if I can swallow it. I don’t exercise much. (Marian, 43 years old)
  • Eat as healthy as possible avoiding anything that could take away from the proper functioning of your immune system. (Vanessa, 43 years old)
  • I haven’t been good with this. (Melissa, 45 years old)
  • Yoga and Pilate. Plenty fruit. (Samira, 45 years old)
  • Diet and exercise have no profound affect on my Lupus one way or another. (Angel, 48 years old)
  • Trying to lose weight is a challenge and my body fights me every step of the way. Exercise, and knees and hips bilaterally makes it very hard, even swimming. Two days go well in bed and can barely move for the next two. (Sally, 50 years old)
  • Nothing. (Stacy, 51 years old)
  • Diet is extremely important…certain foods trigger flares with me. Eating close to nature is great. (Pamela, 52 years old)
  • Sometimes exercising works if you don’t cramp up. (Roselle, 53 years old)
  • Don’t diet. (Cathy, 54 years old)
  • I have to exercise to feel well. (Susan, 54 years old)
  • It doesn’t seem to help- but over physical exertion can be painful. Overdoing it one day can put me in a flare that takes 2-3 weeks to recover from. (Niall, 56 years old)
  • I can’t exercise. I’m working on diet. (Mark, 57 years old)
  • Ha ! Read above. (Cindi, 58 years old)
  • Clean eating is best for me. (Janet, 58 years old)
  • Not much. (Kerry, 58 years old)
  • It’s very hard to follow a diet because I love food. All I’m able to do, because of my back, is walking. I love to walk so that suits me fine. (Linda, 61 years old)
  • After trying every diet out there, I have come to this conclusion…Eat whatever you want. (Kandyce, 64 years old)

Lupus Treatments

What’s been your experience with treatments (medication, etc.)?

  • Nothing. (Cristal, 18 years old)
  • I’ve tried everything, nothing’s worked so far. Currently on Rituxan… I’ve noticed the most difference with it. (Cheyenne, 21 years old)
  • Most of the time my medicine has my stomach upset and the steroids has me gaining weight like crazy. (Niakia, 21 years old)
  • There is so many medicines and right now my doctors are still trying to figure the right dosages, I am sick of medicines but I know they are slowly helping me. (Kellie, 22 years old)
  • Keep in close touch with your doctor. I email mine when I have troubles with side effects. She’s a Godsend. Gets back right away and recommends tricks to combat symptoms. (Jo, 25 years old)
  • Plaquenil did nothing and my pain meds don’t do much. (Nicole)
  • Side effects may be worse then Lupus itself. (Sonny, 25 years old)
  • Well, meds have been great to me. I’ve used Prednisone, plaqunil, methotrexate, imuran, cellcept, Lisinopril. (Ammie, 26 years old)
  • Prednisone tastes gross but it has been the best medicine to control my lupus and protect my kidneys. Plaquenil destroyed my near perfect vision and I am now completely fine without taking it. Any time I took myself off of medicine, I flared. Never quit a medicine without doctors approval to wean off of it. Don’t be scared to tell your doctor if a drug has adverse effects. (Breanna, 26 years old)
  • Medicines take a while to actually start working. (Kaylynn, 26 years old)
  • I don’t take any medications. I’ve tried many times, and they don’t help. (Chris, 29 years old)
  • It is really difficult for me to maintain the time of taking my medicine. There are lot of medicines I have to take. (Deepika, 29 years old)
  • Benlysta and methotrexate combined. (Taja, 29 years old)
  • The medication has to work for me. Not everyone will be on the same medication at the same time… your Doctor has to make sure they don’t counteract with other drugs and that they get the right medication for you (that’s why you should never miss a doctor’s appointment). Doctors don’t tell you that when you have been on a lot of medication it affects your teeth so make sure you look after your oral hygiene because you want to lesson the chances of tooth loss, even if you do you will still loose teeth unfortunately. (Emma, 31 years old)
  • Horrible. (Larissa, 31 years old)
  • I’ve been lucky to experience little side effects. Cellcepts controls my lupus much better than azathioprine. (Nienke, 32 years old)
  • Still trying to find something. (Tonya, 32 years old)
  • It’s been hard because, before I was diagnosed, I hated to take any kind of medication but I’m taking up to 6-7 medications then going to the dermatologists and getting shots in my scalp and getting skin removed for labs. (Kara, 35 years old)
  • Massage helps on my muscles cramps, medicine is still in the beginner stage so no change that I gave noticed yet. (Nete, 37 years old)
  • Major side effects. (Tonya, 37 years old)
  • I have not had a good reaction to the medications but my doctor is still trying to work with me on things. (Jonetta, 38 years old)
  • Steroids were horrible and made me gain 100+ lbs. (Tara, 38 years old)
  • The side effects are the worst part. Because of this, I don’t take my meds like I should. I have a family that depends on me and if I take my meds like I’m suppose to, then I can’t be there like I need to for my kids and husband. (Amanda, 39 years old)
  • Plaquenil and prednisone has helped tremendously with the joint pain. I don’t have much info because I just began treatment a few months ago. (Kristy, 39 years old)
  • Haven’t seen specialist until September 26,2017. (Missy, 39 years old)
  • It takes trial and error to find a combination of medicines that work for each individual. Plaquenil is a standard antimalarial that keeps organ involvement at bay for most lupus patients. It has worked well for me. I have been on numerous immunosuppressants such as Imuran and Cellcept and now to Methotrexate and IV Benlysta. I will not take Prednisone daily and only take it in a dose pack when my lupus is flaring badly. It has taken three years to get a combination of medicines that have kept me as stable as I have been in the 10 years I have been ill. I am currently on Plaquenil, Lyrica, Methotrexate, iv Benlysta and Hydrocodone. I see my rheumatologist every two months. I see a lupus specialist dermatologist every three months. I see pain management doctors once a month. I see my primary care doctor once every six months. I have found that most doctors do not fully understand symptoms and treatments and are a lot of the time a guessing game and trial and error method. It is a rarity that I find a doctor that truly cares and tries their best to keep me stable in my disease. (Sarah, 39 years old)
  • Up to 13 meds per day, chemo, holistic. (Kawanna, 40 years old)
  • Can’t afford treatment. (Angel, 43 years old)
  • Still on Prednisone after 20+ years. Stopped Plaquenil when it started to affect my eyes and caused tinnitus 24/7. May have been caused of hair loss as well…I don’t know. (Marian, 43 years old)
  • Varied, doctors seem to not want increase doses and services are over stretched so they don’t see you as often as they should. (Vanessa, 43 years old)
  • Plaquinil has been great for me and Benlysta seems to be helping some. Melissa, 45 years old)
  • Some would work better than others. (Samira, 45 years old)
  • I don’t see a tremendous difference between taking my meds or not. (Angel, 48 years old)
  • I take 400 mg Plaquenil every day to try to keep my lupus under control. When I go into a flare I have to take Prednisone. They tried me on a medication called methotrexate to replace the Prednisone, but it caused my liver to quit working, and I almost died. I have a hate/love relationship with Prednisone. The side effects are awful. The weight gain, osteoporosis and the crazy mood swings. But this drug has saved my life many times. (Laura, 49 years old)
  • Cytoxan was brutal but with it and mega doses of prednisone saved my life. Plaquanil I take it but can’t say it does any good or not. Stuck on prednisone after 22 years. (Sally, 50 years old)
  • Nothing. (Stacy, 51 years old)
  • I’m on Plaquenil, it’s working reasonably well along with Naproxen. (Pamela, 52 years old)
  • I’ve been on Plaquenil for a long time and it doesn’t work anymore. I’m immune to all pills and antibiotics don’t work for me. (Roselle, 53 years old)
  • I’m not on medicine, I can’t afford it. (Cathy, 54 years old)
  • Plaquenil really does help and keeps the flares in check. (Susan, 54 years old)
  • After six years I have tried everything including eight months of Benlysta. Nothing helps much. I have a chronically high anti ds-dna. Currently on a scale of 0-9 mine is 187. (Niall, 56 years old)
  • Still working on this. Taking Plaquenil, Cellcept. Low dose Prednisone. (Mark, 57 years old)
  • They all have there own unique symptoms that can hurt just as much as your Lupus sometimes and the bad part…..you have to continue it till you get used to it. (Cindi, 58 years old)
  • Some meds work and some do not. I personally use a lot of EO as well. (Janet, 58 years old)
  • Prednisone is about the only treatment that works. Benlysta also now working for me. (Kerry, 58 years old)
  • Plaquinil worked great controlling my Lupus but my eye doctor said it had begun to affect my optic nerve so I had to stop it. If you are taking it be faithful seeing an eye doctor every 6 months. (Linda, 61 years old)
  • There isn’t treatment for Lupus. We have to borrow drugs from other diseases. They help, for a while. (Kandyce, 64 years old)

Lupus Recommendations

Anything you’d recommend for someone with lupus?

  • Get a massage if your body hurts. (Cristal, 18 years old)
  • Take vitamins, take all your vitamins… they help so much with energy. (Cheyenne, 21 years old)
  • Always try, and remain positive about the situation. (Niakia, 21 years old)
  • Tiger Balm for when your muscles and joints are aching. (Kellie, 22 years old)
  • Magic wash for mouth sores is amazing! You can look up different recipes online. Also it’s going to be okay. I know it sounds trite, but it’s true. You will feel better, just sit tight. (Jo, 25 years old)
  • Get a good sunscreen. (Nicole, 25 years old)
  • You are not lupus. (Sonny, 25 years old)
  • Live life as you desire. And be compliant with your doctor, and the meds that you are super to take. (Ammie, 26 years old)
  • Find a doctor you are 100% comfortable with, trust them, do not quit medicine without their approval and do not take over the counter medicine without their approval. Some medicines can have adverse reactions with prescribed medicines and they can cancel each other out making 2 of your medications null. (Breanna, 26 years old)
  • Do your research, join a support group. (Kaylynn, 26 years old)
  • See encouragement and advice. (Chris, 29 years old)
  • Always follow the doctor advice. (Deepika, 29 years old)
  • Don’t isolate yourself, always take your medication even if you feel fine, your not.  If you can try different foods that’s great. Gentle exercises. Never miss appointments. Always listen to your body… if you need a nap, take one whether it be after the school run or straight after work or generally when you can. Oral hygiene to lessen tooth loss… make sure if you have any questions for your consultant to write them down and take them with you and don’t be afraid to ask. (Emma, 31 years old)
  • Be in alert each day..keep a diary. (Larissa, 31 years old)
  • Always get a second opinion. (Nienke, 32 years old)
  • Don’t give up. (Tonya, 32 years old)
  • Please take care of yourself and go to your doctor appointments as you should. (Kara, 35 years old)
  • Change your diet, start exercising and take a lot of breaks so you remember to listen to your body. (Nete, 37 years old)
  • Prayer. (Tonya, 37 years old)
  • Be patient and put yourself first. (Jonetta, 38 years old)
  • Don’t take steroids !! (Tara, 38 years old)
  • Find support that’s the most important thing. Listen to your body and NEVER give up! (Amanda, 39 years old)
  • God. (Missy, 39 years old)
  • Never give up. Be your best. Follow treatment plan and get second opinions. Be positive and try to remain stress-free. Find what works for you and your illness and try to balance your life as best you can. (Sarah, 39 years old)
  • It’s all trial and error. (Kawanna, 40 years old)
  • Support groups. (Angel, 43 years old)
  • No. (Marian, 43 years old)
  • Read up on condition to so you can work out what’s best for you. See Occupational therapy. Spread your work load as much as possible so you don’t exhaust your entry levels. (Vanessa, 43 years old)
  • Be involved in your treatment decisions. Ask questions. (Melissa, 45 years old)
  • No. (Samira, 45 years old)
  • Develop a good relationship with your doctor and rheumatologist. (Angel, 48 years old)
  • Take your medications. Don’t think you are smarter then your doctors. Learn what your flare triggers are. Listen to your body. (Laura, 49 years old)
  • Don’t be afraid to ask for help. Remember not everyone is made to be the friend of a chronically ill person. It really is not personal. (Sally, 50 years old)
  • Keep questioning. (Pamela, 52 years old)
  • Keep a journal entry of your flare-ups… talk to your doctors. (Roselle, 53 years old)
  • Exercise and do not stop moving. (Susan, 54 years old)
  • No. (Mark, 57 years old)
  • Get the hips, the back, the wrist….whatever is broken …fix it!!! I did …it’s best thing I ever did for myself. (Cindi, 58 years old)
  • Keep moving even when you don’t feel like it. (Janet, 58 years old)
  • A good rheumy. (Kerry, 58 years old)
  • Rest when your body tells you to… otherwise exercise and watch the foods you eat. If you get a new med, watch for any side effects. (Linda, 61 years old)
  • Get as much education as you can. Then you can earn a living from your computer or another home based business. (Kandyce, 64 years old)

Lupus Resources

What specific resources have you found most helpful?

  • Internet. (Cristal, 18 years old)
  • Facebook support groups and the mighty blog. (Cheyenne, 21 years old)
  • Eating healthy and doing a little exercise helps ease some of the pain. (Niakia, 21 years old)
  • My friends and family. (Kellie, 22 years old)
  • Lupus Buddies on Facebook. (Jo, 25 years old)
  • Lupus Foundation of America, John’s Hopkins. (Nicole, 25 years old)
  • Lupus Ontario. (Sonny, 25 years old)
  • None. (Ammie, 26 years old)
  • The Lupus Foundation of America, Lupus Society of Illinois, and the non-profit organization ‘Lupus Friends and Family’ or lupusfff. (Breanna, 26 years old)
  • Sacramento Lupus Support Group of Northern California. (Kaylynn, 26 years old)
  • I’m still looking for them. As a man, it is almost impossible to get help or understanding. Everything is targeted towards women. (Chris, 29 years old)
  • Steroid. (Deepika, 29 years old)
  • I have never had any help or been offered any help apart from my doctors, nurses and physiotherapist who have saved my life on more than one occasion. (Emma, 31 years old)
  • Be in alert each day..keep a diary. (Larissa, 31 years old)
  • Online research reports, contacting different doctors (hospital in Leuven, Belgium). (Nienke, 32 years old)
  • Support groups. (Tonya, 32 years old)
  • Taking my medication and not letting myself get bad off sick. (Kara, 35 years old)
  • Lupus sites on Facebook. My extra family. I love them all. (Nete, 37 years old)
  • Support. (Tonya, 37 years old)
  • Other lupus patients and support groups. (Jonetta, 38 years old)
  • Support groups. (Tara, 38 years old)
  • My Lupus group on Facebook and my doctor. (Amanda, 39 years old)
  • Talking to others with Lupus. (Missy, 39 years old)
  • Being educated about medications and your illness. Support groups are very helpful. Finding alternative treatments or therapies. Doing your own research about every aspect of your illness. (Sarah, 39 years old)
  • Lupus.org. (Kawanna, 40 years old)
  • My Lupus groups on Facebook. (Angel, 43 years old)
  • Lupus UK. (Vanessa, 43 years old)
  • Being more occupied with other things, less thinking about the illnesses. (Samira, 45 years old)
  • None really. (Angel, 48 years old)
  • Online support groups have really helped me out a lot. These are people going through so many of the same things you are. You can learn a lot from them, and also help them. (Laura, 49 years old)
  • Lupus with friends site on Facebook. (Colleen, 50 years old)
  • Read, join support groups. (Sally, 50 years old)
  • Online groups…other people’s experiences. (Pamela, 52 years old)
  • Research Group helps to talk about my symptoms. (Roselles, 53 years old)
  • My doctors have a good team. (Susan, 54 years old)
  • Tons of help online. (Mark, 57 years old)
  • Myself…I walk the walk of Lupus and talk the talk…And research it often. (Cindi, 58 years old)
  • Self study. (Janet, 58 years old)
  • My rheumy. (Kerry, 58 years old)
  • It’s really not just one. Research… reading up on it and the best is hearing what others are going through. (Linda, 61 years old)
  • Lupus groups online. (Kandyce, 64 years old)

Lupus Stories

Share an experience you’ve had related to living with lupus (flare-up story, etc.).

  • Not able to go to school for a awhile. (Cristal, 18 years old)
  • There are too many… I flare almost every week like clock work. lol (Cheyenne, 21 years old)
  • When I was first diagnosed I had a bad flare up to where my whole right arm locked up, and I could not move it. My arm was hurting so bad it broke me down to tears, and my mom had to rush me to the emergency room. (Niakia, 21 years old)
  • I woke up on Memorial Day weekend to over 300 blisters from my head to my knees, I am still dealing with this flare up, it has been difficult but every day is a little bit better. (Kellie, 22 years old)
  • I was diagnosed the day after turning 23. (Nicole, 25 years old)
  •  Seven year flare and found the love of my life in a flare. Three months in, she sat beside me every day of chemo treatments. (Sonny, 25 years old)
  • My first flare (that led to my diagnosis) was right after I turned twelve. I woke up with a stomach ache, took a nap after a 1/2 day at school, and woke up with blurred/doubled vision and knew I was going to be sick. By the time I got the phone to call my mom, I could barely see anything at all because it kept getting darker and darker. Next thing I know, I wake up in an ambulance being told I had a seizure. (Breanna, 26 years old)
  • Try to stay away from stressful situations, don’t over do yourself. (Kaylynn, 26 years old)
  • I had a professor fail me in a class because they didn’t believe lupus was a real condition (I took too many days off because of flares). I had to get disability support services to come in. It was embarrassing and many people in my class thought I was being ridiculous or that I was getting “special” treatment. It caused so much emotional stress I started hurting myself, because the stress made the flares worse. (Chris, 29 years old)
  • It is really painful to living with lupus. (Deepika, 29 years old)
  • I’ve been on chemotherapy to help stop the swelling on my kidneys… they are now scarred. I have suffered miscarriages. I have had 2 small babies… 1 before I was diagnosed… one while she was preemie. I’ve been in a coma because of lupus when my tongue swelled and I couldn’t breathe… all lupus related, I’ve been diagnosed with pericarditis brought on by lupus also very rare…I have been paralyzed…I have had pneumonia more than once and nearly died… if I get the flu or any illnesses I have to tell the doctors. I have no thyroids or calcium glands. I suffer with rashes in the sun. I suffer with stiff muscles and joints. I could go on and on. I’ve had that many things happen to myself… I could write a book. (Emma, 31 years old)
  • Having 2 miscarriages and massive body bruising. (Larissa, 31 years old)
  • In 2013 I got admitted in the hospital due to an inflammation of my intestines. This evolved into pericarditis and eventually myocarditis before the doctors were able to get it under control with a form of chemotherapy. It took me six months after leaving the hospital to get back into an acceptable physical shape. Lupus is a very uncertain disease, and can strike, even when you least expect it. (Nienke, 32 years old)
  • Hard times with my husband. (Tonya, 32 years old)
  • I also have Sjogrens and a kidney disease, all hit me at the same time, all diagnosed within the same year. One flare up was so bad it shut my kidneys down. (Donald, 35 years old)
  • I was experiencing some bad pain in my head as if someone was stabbing me and it burned very badly and it was so painful so I had my hair shaved and I had less pain in my head. I have to get 25 shots in my head every two weeks and that’s very painful. (Kara, 35 years old)
  • I have once had a flare that attacked my lips so they swelled up so much that when I looked down I could see them. (Nete, 37 years old)
  • Pain all over the body. (Tonya, 37 years old)
  • Went to Universal for my birthday and despite taking the medication and being hydrated, I still managed to have a flare up in the middle of the day and had to find refuge in a shady part of the park while my family went and got me a wheel chair and water and a cover . I was wearing long sleeves but my face blistered from the sun despite having on sun block. (Jonetta, 38 years old)
  • When I was first told I had Lupus, my family didn’t understand. They thought it was a made up illness and I was just wanting attention. The first few years were the hardest. It was hard for me to be in a flare and not have any support from my family or friends. The guilt and why me was and sometimes is still the hardest part of living with Lupus. It took my family a long time to come around and to understand that Lupus is real and its physically and emotionally taken a toll on me. (Amanda, 39 years old)
  • Went into remission for 4 years…..currently trying to get back to that place. (Kawanna, 40 years old)
  • Not being able to get out of bed, unable to go downstairs to be with family. So much pain and exhaustion. (Angel, 43 years old)
  • When I got severely ill and had not been diagnosed, I was 30 years old and my son was seven. After about a year of not being able to even take care of myself, I knew that I could not take care of my son the way that he deserved. I had to ask my father to raise my son for a few years because I knew that I was too sick to be able to give him what he needed. It was the most difficult decision I have ever had to make in my life. I knew it was for the best but it broke my heart. He is now 16 and I have been diagnosed for three years now and I am at a fairly stable place in my illnesses. I have been able to reestablish a relationship with him and I am now able to take care of him and myself the way that he deserves. This illness has robbed me of a second chance or much of a productive future and all that I can do is fight through this sickness and do my best daily trying to be positive and as happy as I can possibly be. I try to spread my positive feelings and enjoy even though I am very sick and it is difficult on a daily and even a minute level. I hope to spread joy to as many others as possible and continue to keep my positivity with in myself so that I have hope in at least in that fashion since my physical abilities have been taken from me. I hope to continue to teach my son to be a fighter and to be empathetic and to do the best that he can be so he can be as successful as possible. He is my light my hope and my heart. (Sarah, 39 years old)
  • I struggle with joint pain and fatigue and work has helped me spread my workload and manage my diary to suit me. I don’t do any unnecessary walking and I try to streamline as much as possible. (Vanessa, 43 years old)
  • I remember having a flare-up about 2 to 3 months. The face was bright red and swollen, really tender, and hand felt hard as a brick. (Samira, 45 years old)
  • After I became pregnant and delivering my oldest daughter, I went into remission for over 18 months. (Angel, 48 years old)
  • I started breaking out in hives one evening about five years ago. Within a few hours my entire body felt like it was on fire and I was having a hard time breathing. My daughter called 911 and the ambulance came. They gave me two shots of Benadryl, but it didn’t help. The paramedics said they had never seen hives that large before. Some of them were much larger then golf balls! I ended up at the hospital getting more Benadryl through an IV. I had hives from head to toe. I had them inside and out. In my mouth, my esophagus and in my privates. That was when I found out that hives are actually pretty common with lupus patients. My body decided that it was allergic to my skin. It took about three weeks for them to get it under control. I now have to take prescription strength allergy medicine daily for the rest of my life. I have tried to stop it, but within a couple days the hives start back up. (Laura, 49 years old)
  • I’m having a flare at the moment so can’t lift my left shoulder and need help getting dressed and such and it sucks. (Colleen, 50 years old)
  • I lost voluntary muscle movement, had total passive range of motion but it would migrate one limb to another. Was in a wheelchair for about a year because I could not depend on my legs, one minute I could walk and the next one leg wouldn’t move. Washing hair was interesting. I couldn’t raise one arm on any given day, I’d pull it up with the working arm and wash. Sometimes the not working arm would slam back down hitting whatever was in it’s way. Not a good time in my life. (Sally, 50 years old)
  • I’ve been diagnosed with LUPUS SLE since 1983 and it’s been a long roller coaster ride. My story is so long that I need a lot of space to write it down. (Roselle, 53 years old)
  • I had a back ache that kept moving around my back, went for a massage and it didn’t help, muscle relaxant did nothing, it was a Lupus flare. (Susan, 54 years old)
  • If I get stressed at work or home, it will probably put me in bed for two or three days. (Mark, 57 years old)
  • Peripheral Neuropathy (PN) Just laying down, my feet (with neuropathy ) feel like I have some type of massager on low attached to them. A tingling feeling in my feet is felt with surges of stiffness. They feel tight and swollen.When I get on my feet, they wake up ( actually they are half numb) and they feel fine but don’t forget to grab those shoes… OH and better have some kind of experience with what SHOES feel the best because it totally defines MY DAY!Every day I feel a massager attached to my feet but this massager uses no electricity, it’s not solar, no batteries are used…. it’s just the way my feet feel (with Neuropathy) every day of my LIFE since 2008 when Lupus struck me again! (This is the first time I shared this) (Cindi, 58 years old)
  • I had to give up my career. Going from making 90,000 a year to no income was a biggey. But thankful I am still alive. (Janet, 58 years old)
  • There are many. (Kerry, 58 years old)
  • I can take the pain, the fatigue etc. but when I have Lupus lapse, it upsets me. I can’t complete a sentence but I know what to say… it just sticks in mouth and doesn’t come out. Once I went to the refrigerator and put the phone in it. My kids were small then and we all had a good laugh. (Linda, 61 years old)
  • Flew to Tennessee from Oregon to see my daughter. The whole trip caused a flare and stayed in bed the whole time. (Kandyce, 64 years old)