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.
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.
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.
My ANA is positive 1:80, signs and symptoms extremely similar to this vids, but inflammation markers and the rest if my bloodwork’s perfect, so now I’m crazy 🤷🏽♀️
Your so right! I have every single symptom of lupus but since I don’t have a positive ANA then I can’t be diagnosed with lupus. My other blood work and urine points do lupus also. I have been misdiagnosed with 2 other conditions I didn’t end up having. Idk what to do at this point!! Beyond frustrating! I just want to feel better so I have some quality of life! I have no quality of life at this point in time.
I’m so sorry you started having seizures! Did you find out why? That is so scary! You’re right it is ok to get help for mental health. It is more than ok, it should be something everyone does for themselves. It needs to be done in order to be the best you. I am new to your channel. I wrote about my story on your post about being diagnosed with Lupus. I can relate to your story 100% I had all of the same symptoms of you plus I have had a gross and painful wound on my leg for over a year now and between the both I have had no quality of life. I was feeling so hopeless,sad and depressed this last December that it scared me. I decided it was time to get some serious mental health. I checked myself into an inpatient place that treats drug and alcohol addiction too. They use group treatment there which was really helpful.
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! ❤
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 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.
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!
I love you! And I agree 100%! Get help with mental health. Mental health is the "invisible" illness people can't see yet usually more important than the illnesses seen from the outside. You can be in bad physical health & be ok if your head is where it needs to be. However, it's practically impossible to be at a bad spot mentally & ok physically. I love you!
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 😢
Hello:) I'm so sad you have to deal with this. It's incredibly frustrating to get a Dr to listen! It's been a hell of 2 yrs. I'm on Saphnelo now. Come on remission. I need to do an update! I'd love an update! I'm hoping you get some answers!
@DreamCatcherFitness4u I've been ill for 4 years and had loads of mri's from orthopaedic department but they are all clear. I had a major car accident in 2008 and they are just putting it down to that. But I keep saying what does that have to do with dropping things, no strength, no memory, no energy, toilet issues, nerve issues, losing feeling in hands and feet (going completely white) oh and so much more. My blood tests show I have ccp antibodies but I've not been told why?
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. 🙏🏼💪🏼
Hello, I had multiple Avise panel done. 2 specific blood markers came up positive. I'll look them up for you. I can't remember. Lol I need yo do an update video
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.
I. So sorry, I just saw this. It's super hard to keep determined. I feel the frustration you are having. The body changing is very difficult. I'm going thru that the last 1.5 years. But for me, I had to let that body go and shift my mind to a better quality of life. It does get better! We just have to keep positive. As hard as that is, cuz I have had some very low times. We are humans. Just give yourself Grace!
I did within a few weeks. Have you told your Dr? They added a few drugs to mine. Unfortunately I failed them. They made me way way worse. I'm currently waiting to get on Saphnelo. You might need a second med. Alot of us are on multiple meds Unfortunately
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.
I'm sorry you have to deal with that. It makes me so angry that we have to deal with that! I've dealt with crap too. I'm fortunate enough to have a great family support too. Have you had your new apt yet? If so do you have any answers?
I have the appointment scheduled 3 days before my birthday next month. It always seems like something is always happening to me on my birthday. Yesterday and Saturday were the worst pain I have had. All I was able to do was be in a ball on my bed a cry when it just got to much. I believe that I know when I got SLE which was in 09 right after I got sick with MRSA in my spine. I have been able to work out some of what causes the flare up. Like the last 2 days I was able to get much sleep and I know that I have to be careful with going outside without wearing the right stuff because if I don't I start having swelling in my face and pain all over and then some flares are from what I eat. I have am trying to get a game plan for finding out what I can get have. My problem with food is that I need some recipes to help because I haven't been able to eat much. I just had a question pop up it's about the memory problem. And right I can't remember the question and I think it has to do with how tired I am. If I remember I w
I was 9. At that time, the docs weren't sure how I came down with ITP. Now, I am waiting to see the Rheumatologist to test for RA and SLE. I have a diagnosis of Discoid Cutaneous Lupus. Thank you for sharing your story.
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'm so glad you advocated for yourself. You absolutely start to feel crazy because we trust Dr's to do the right thing. But man, this has taught me to never trust what is said. Like cookie cutter medicine needs to go! I was told all the same things. How did it turn out mama? Do you like the new Dr? Sending you positive vibrations. I'm going to do an update video this week. Alot going on.
I haven't seen the rheumatologist yet but did have abnormal ana through my dr doing lood work...glad to know there are others with dizziness! I am so dizzy and lightheaded some days I feel as though I will not get thru the day. Can't get into the rheumatologist for 4 more mouths....everyday Is a different symptom
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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 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.
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!!
I'm so sorry you are dealing with that! 6 months!! Have they biopsied it? I get mouth and nose sores, but my other spoonie friends get sores in the mouth and tongue.
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.
Oh I agree food is huge!!! I'm waiting on my food sensitivity testing!!!I know garlic is a huge trigger for me personally. I'm glad you figured it out!!!
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.
I was diagnosed in Dec. 2018 with Lupus SLE and R.A. then the following Easter time 2019 I was also diagnosed with Scleroderma and Fibromyalgia (along with some other fun stuff). One of the most difficult parts of everything has been not having anyone to talk to that understands what having these conditions is like. It's taken me awhile to find anyone (even online) who is experiencing these awful conditions. I think what you are doing is really great work.
Thank you so much!! That's alot for sure. I'm sorry that's your reality. It's very different when we feel so alone and like no one understands what it's like for us. I'm trying to figure out how to link my other socials here. I don't post as much here as I should!
hi there. my name is jessica and i found your page searching for people who talk about being disabled some way. not sure if you knew but march is National Developmental Disabilities Awareness Month and i am an alternative disabled content creator on multiple platforms including here on youtube. i didn't know about it until i googled myself. if you are open to having someone to do a collab on your channel/content i'm avaialable and would love to work with you! have a great day.
@@DreamCatcherFitness4u awesome let's talk in private so no one steals the idea. i don't see an instagram link or an email address listed anywhere. how do i connect with you?
