My lupus diagnosis story 

It took ten years to find out I have auto immune diseases. I had given up at one point because I felt doctors didn’t believe me. No one did. Not my husband or the doctors. But finally found a primary dr who listened and refereed me to a great rheumatologist. He told me I should cut sugar and a possible try a gluten free diet but that is hard. Don’t give up - advocate for yourself.

Thank you for making this video. You have spoken hope into my heart. ♥️

I'm so happy to find you. I was just diagnosed last Wednesday with Lupus after 2 years of pain and fighting my doctors. It crazy I lost 100lbs to get healthy was in the gym daily. Until I couldn't even lift a 10lb weight. 😪 It has been a crazy ride. I'm so happy to find you.

I’m so thankful that to see someone get the help they need. Also, all should know that you can have each and every one of these symptoms but unless your ANA titter is over 1:80 and coursing damage your rheumatologist is most likely going to disregard your symptoms.

It's been so difficult working out with an autoimmune disease. What I used to do for a warm up, has become my workout and even that feels to much for me. It's challenging feeling this way and seeing my body change drastically. Trying to stay encouraged but it's been tough. I wanted to start a family, but I can barely take care of me now.

Hello my dear so happy you share your experience,I was diagnosed with the same lupus about 23 years ago, I have been taking hydroxychloroquine 200 mg since, about 5year ago I notice my memory wasn't the same so I give up driving very forgetful. I also have a daughter that passed away while she was pregnant because she had the lupus

Thank you so much for making this video! I appreciate it so much! You described most every symptom I have. I came to the conclusion that I have Lupus on my own. My appointment with my Rheumatologist is not until May. I’m on the waiting list for cancelations. I have had fibromyalgia for 24 years now. I also have so many other medical conditions to name a few Hashimoto’s,Narcolepsy, TMJ disorder ,Raynard’s, nose and mouth sores, I am extremely sensitive to the sun and heat , arthritis in my ankles which I found is common with Lupus and I have had a awful and extremely painful leg wound for over a year now. I found out Lupus can cause leg wounds. A superficial wound just appeared one day and it slowly got worse and worse and bigger and bigger. I see a wound specialist once a week. He said my wound won’t heal until my legs aren’t hard, tight and swollen. My legs have been hard tight and swollen for over 6 years. 😕 I have been dealing with flare ups for over 6 years where my ankles hurt so bad that I can’t walk I have to shuffle. My legs swell up huge and my knees are so swollen I can’t bend my legs so I can sit without help or stand without help. I can’t climb stairs or wear normal shoes or socks. I was first misdiagnosed with Scleroderma then I was misdiagnosed with E.F. I really don’t know how they didn’t realize it could be Lupus? I thought fibromyalgia and my other conditions were the worst a body could feel but Lupus and this wound on my leg causes a whole new level of pain I didn’t know was possible! Not to downplay fibromyalgia. It’s a miserable condition to have on its own. It’s been the toughest year of my life. I have had no quality of life at all and have been so depressed. My anxiety is higher than ever. My 6 year old grandson is terminal and I need to be well enough to be able to travel from Washington to Idaho to spend time with him, my granddaughter and daughter. 😢 Time is precious, we don’t know how long he has. They use to live close to us and we spent everyday with them but their Dad, my Daughters Husband and our son in law committed suicide last March and my Daughter couldn’t afford housing here in Washington. 😢 We are still grieving. The thought of loosing my Grandson,Rowdy, is heart wrenching! I don’t think I’m strong enough to loose him. I love him so much! We have such a strong bond. ❤ I have some videos on my RU-vid channel if you want to see how sweet and adorable he is! Thank you again for making your video! I cried through a lot of your video, it was very touching and I could relate to all of it.❤ I just realized this is 2 years old, I hope you’re doing much better now! ❤

thank you ❤

Thank you for sharing this! I started having flares in 2021 and they are debilitating and then another one in early 2023 and the symptoms didn’t quite fade away like they did before. I still have joint pains and stiffness in my hands every day. First symptom was loss in grip while lifting weights and being more fatigued thinking I needed more rest days. Got worse from there with joint pains and brain fog - forgetting words in the middle of my sentences. I’ve had flares in my feet or hands where I can’t use them with no known cause. I’ve tested positive for ANA but my other labs just aren’t there yet. Thankfully I’ve got a good doctor who firmly believes I have an autoimmune condition and is treating me as such because she said sometimes it can take up to 10 years for labs to catch up to symptoms. Again, thank you for this video for just confirming to me again that I’m not crazy!

Thank you for sharing this. I just finally got a doctor to listen to me after 7 years of fighting doctors and telling them that I have Hashimotos. She rediagnosed me with Hashimotos, I then brought up all my other symptoms and she is testing me for Lupus now. Symptoms I've had since the birth of my now 6 year old and were explained away as "allergies" by everyone else

Thank you for sharing your story! I feel like you're telling my story. 2 years ago, pre Covid times, I was literally in the best shape of my life. I looked good and I felt wonderful then out of nowhere bam, all the crazy symptoms began. I initially attributed everything to being a tired stay-at-home mom to two small children but as more time passed, I quickly realized something more sinister was going on. I went to the ER several times for the chronic pain that I was in and they attributed everything to stress and anxiety. Over these past two years, I've continued to see several doctors due to the chronic fatigue, muscle pain and a crazy dizziness that I just can't shake and they too have diagnosed me with nothing more than stress and anxiety. I began to feel like I was going crazy! It seemed as though nobody believed me, and and on days it seemed like my husband didn't even believe me :( A few weeks ago I went to my PCP yet once again and I pushed for my inflammation markers to be checked as all other blood panels had come back normal, she agreed to the testing. And what would you know, My ANA came back positive and My Smith Antibodies came back at a ridiculously high level. Therefore, it is more than likely that I do have lupus. I will find out when I see her next Thursday. I think God that I kept pursuing this matter and advocating for myself because had I not, I would have likely been dismissed as I had in the past. Did you ever experience dizziness or persistent head pain / pressure? I've had several CT scans that all came back clear therefore I'm thinking all this has to be lupus related.

I believe it is something you are ingesting that causes these flares. I have RA which only rears its ugly head when I consume nuts and seeds. At the start of the pandemic, during the lockdown, I was eating a lot of peanut butter sandwiches. Unbeknownst to me, that is what was causing the excruciating pain in my thumbs and index fingers. I couldn't hold my dog's leash, use a can opener or even turn a doorknob. Forget trying to clip my toenails. An elimination diet showed immediate improvement. I do okay with the dreaded nightshades, for which I am most grateful, because I love them.

Im so appreciative of you and your courage to document and being so real!

Thank-you for sharing your story. Some of the symptoms I've had are similar to yours. I had my hips lock up after only a 1-hour walk in the woods one time. Insane how sometimes I can walk for 4 hours and other times can barely do any physical activity at all. And the muscle weakness washing hair or lifting light weights. Sometimes I'm too weak to put my hair in a pony tail or lift my arm to brush my teeth. We are all in this together, though! I'm so thankful for the online spoonie community!

You literally are describing 99% of my symptoms except the nose sores.

Thank you for sharing your story! I had to comment because I've been having some weird mysterious health stuff going on, but I also was recently diagnosed with ADHD. That alone has been life changing, and I think that validation and empowerment has led to me seeking answers for the other issues. I really appreciate seeing content that I can actually relate to. ❤

Thank you for sharing your story. I can relate to you. My story started back in 2005 when an mri showed there were 6 white lesions on my brain. I was showed the results. It could be... Lupus, MS, Migraines, and a few others were the reason for the lesions. Nothing was ever followed up as diagnosing. Just possibilities. I have followed up on every Doctor appt. I went to. I know my body and how I know how I feel. Ive had mri test galore. Blood tests etc. Im pre-diabetic to. So from 2005 to 2017 when I had a stroke, they are more articulate getting answers for me. Going through all the tests etc. Im still getting the same old. Then the results after my stroke, I was told its White Matters Disease. I was blacking out and falling. I broke my right wrist severely from the fall. Im told now its Cadasil. Two nuerologists swear by it. I dont!!! Both blood tests and skin biopsy were BOTH NEGATIVE. Im told its not MS. I begged my Doctor. I told her Im suffering. Its not Cadasil. I dony care what they say. I have all the symptoms of Lupus. Ulcers inside my mouth, red rash, very very sensitive to the sun. Hot and cold intolerance, sweatting profusely esp at night in bed. Now I have to see the rhuemologist. Im at my wits end.

Just two words: Goodbye Lupus book by Brooke Goldner, thank me later. A had very similar story like you, except i have SLE with kidney inflammation, lupus nephritis. After many months of Hell i can say I'm very close to my old self, no muscle pain, enery almost like before lupus. I'm back in the gym. And kidney disease in complete remission, zero medication. Good luck, and believe me you'll push trough this.

You've got this! Auto immune issues suck ass! flare ups are the worst for sure and remission times are always nice! We have very similar stories! Great video!

This made me cry, I have all the symptoms you mentioned and more. But I am totally invalidated by everyone, except my mother. Who looks after me when I crash. I have now been referred to rheumatologist and neurologist but waiting list is 4/6 months. I can't afford to go private, waiting on nhs is my only route. I'm so pleased to see you still go to the gym because I used to be so active but now struggle to walk some days 😢

Oh wow… Thank god you have answers . I to just got told I’m on the same meds don’t notice any help relief yet. I also live in Az 2 hrs from San Diego looking forward to seeing what you can share. God Bless

Thank you for sharing

Hi my Name is Rita I appreciate you so very much for sharing your Videos I have Lupus myself really been looking for someone I can relate to Lupus sucks but I’m so grateful to be alive ❤️❤️

Thank you for sharing your story. I'm sorry you've had to experience all of the awful pain & struggles that come along with Lupus (& other health issues). It does help to hear someone else describe experiencing the same pain & symptoms that you yourself have experienced. It helps to know that you are not alone in this.

Our story's are nearly identical...I was just diagnosed about 4 months ago but I've been living with it for at least 10 years. I had been telling my doctors for years that there was something wrong and they would ALWAYS test my thyroid and hormone levels. The last time I went in I told them no more. I said "this is autoimmune, test me for an autoimmune disease, If I'm wrong then you can check my thyroid and my hormones again...I was so relieved to get a diagnosis because it meant I wasn't crazy and I wasn't lazy or depressed, my sore body wasn't just me over training or being a puss ( I was always telling myself to toughen up) . If I hadn't put my foot down and said no more, we'd still be on the same hamster wheel. It shouldn't be like this, it's so infuriating.

I too am being told I have lupus and sjogrens. I have trouble excepting that possibility that any symptoms could be autoimmune related. It’s so frustrating to accept that the things happening is probably from the diagnosis that I haven’t truly claimed.

It took 10 years to find out what was going on with me. A lot of people and including me thought that a lot of my problems were all in my head. I have so far been diagnosed with SLE and I also have a rare disease that is called c1 esterase inhibitor. I have been trying to get into the Dr to see if there is more wrong with me and also to start the treatment. It took a specialist ENT to find all that out. Right now I have been having major problems with pain in all my joints and some days I can barely walk to the bathroom so with that going I haven't had my first appointment with the RA Dr. I just feel so happy to know I'm not crazy and that I now know why I have been so bad for years. There are still some in my family doesn't believe what's going on. They just think that all the pain and everything else going with me is all in my mind. I am lucky to have family so close me that some of them can help me out. There's way more of the story.

Thank you . I have been sick for 3 years. My symptoms are severe fatigue and joint pain. My rheum now is toying with a lupus diagnosis even though I dont have the markers and many of the symptoms . I am so scared. I have tried so. many meds. currently on plaquinl but thats not a home run yet. Thanks for your info. its a mind game as much as anything else . Hopefully I can get stable enough to work out again !

Thank you for sharing. I had Graves. I'll know in 5 days for sure....

Thank you for sharing. I can really relate to your story. I had a bad neurological flare a few months ago. MRI’s came back clear. Been having joint pain, fatigue and a laundry list of symptoms for years! I know you must feel a little sense of relief knowing you’re not going crazy bc after all nobody knows your body like you. I hope you keep feeling better ❤️

When you went through your bouts of anxiety and depression, how did you just not give up?! I'm 7 months in to the "no answers" and knowing something is wrong.

Thank you for sharing your story. I’m going to get checked my niece has Lupus and I’ve been physically been feeling like crap forever. Love you girl

Cause my body is a jerk 😆😆 can so relate 🥴😆

I have adhd and hashimotos and I'm waiting on test results Friday I should know

I’ve had sores on my tongue for about 6 months and they do not go away, ever. Nobody can figure out what they are and why I have them. If others have had this can you tell me what the doctor said about it? Thank you so much for this video!!

What tests were done that confirmed SLE? ANA and Ro/La fit the Sjogrens diagnosis. I have Sjogrens, SLE, Antiphospholipid Syndrome and RA. I’m taking 400mg Plaquenil and .8 methotrexate injections. 🙏🏼💪🏼

Thankyou. I have had Rheumatoid for 12 years. I had a UTI a few weeks ago..they said there was blood in my urine..took Keflex antibiotics..had red butterfly rash that burns and hurts and I thought I was having an allergic reaction to antibitotics but it has persisted long after stopped, I am anxious and depressed, I am not dieting and have always been overweight but all of a sudden I am losing weight, I keep smelling cigarette smoke when nobody is smoking, been having issues with driving when I usually dont...I am wondering if it's lupus..waiting on test results.

I have been on Hydroxychloroquine for over 2 months now and see no difference. Was curious if you have felt a difference now?

I will find out if my year old chest pain and right side pain are lupus. Almost a year of doctors telling me my heart and liver is good. Nothing anywhere that would cause pain. A low white blood count and I am getting my test result.

Hi Dreamcatcher Thank you for your video. Can I ask you a question? You said you had IPT. Were you and adult or a child.?

You must have flipped the video around because you keep referring to your "right side" and then pointing to your left side.