r/lupus • u/Firm_Bend_788 Diagnosed SLE • 2d ago
Advice I want it to end
I am 20 y/o female with lupus
I am losing my will to live, I’m like basically bed ridden. I can’t get out of my bed, can’t eat, can’t leave my house without feeling like shit. I have no energy like genuinely at all, I feel like shit every single day. What’s the point of living if every day I’m going to be in pain. I almost wish I just lived in a hospital so I can numb the pain and lay in bed all day. I feel like I can’t do anything without feeling sick but then again if have no energy to do anything. I’m exhausted all the time I can’t even clean or do ky laundry.
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u/Positive-Comment-207 2d ago
I am 22 y/o female with lupus. I promise you, you’re not alone in feeling this way. I was diagnosed when I was 20, and I’ve been living in hell ever since. I live with my mom and we both try and survive off of her disability, with a little help from my part time job. I am also going to school for surgical technology 5 days out of the week and work on the weekends. I never have a day off and it feels like my lupus is going to kill me. Everyday is worse. I’m thinking of quitting school because of how bad it’s getting. I don’t really have a will to live other than I’m hoping the dreams and goals I set for myself before I got diagnosed will still come true… I’m losing hope though. Everyday my whole body aches and I can barely move. But one thing I do look forward to is maybe tomorrow won’t be as bad as today and I’ll be able to physically play games on my computer or walk into work normally. I’m barely hanging on by a thread but I’m still here. Please give yourself grace and understand that you don’t deserve this pain. You deserve to live like everyone else. Take it one day at a time and celebrate those small wins! That’s how we get through this. You are NOT your pain <3
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u/matt171290 1d ago
Hello,
Sorry for my English I am from France and diagnosted with lupus last year. My main symptom is my sunsensitivity it’s horrible I can’t do 10 meters without feeling burned on my face and eyes and big brain fog . My life became horrible because of that. And I Heard there are no drugs for that. Please if someone has good stories about « healing» I am really desperate too :(
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u/Positive-Comment-207 1d ago
When I was diagnosed it was right before summer, my rheumatologist told me to wear hats, UV clothing and A LOT of sunscreen to prepare for sun exposure. Like an idiot I didn’t listen and I experienced overwhelming brain fog and rashes. So now no matter the season I never leave the house without sunscreen, it reduces my symptoms greatly!! I would recommend spf 100 (I know that’s a lot but that’s what I wear lol). I hate UV clothing because I already sweat constantly, but hats help a lot! Hope this helps!
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u/matt171290 1d ago
Yes thank you very much but you see I will go outside now in France it’s 16pm I always use 50+ sunscreen and I am very bad :( you think it can be better with other drugs ? I also take psychiatrist drugs like lamictal wich I know is not very good for sun and lupus and overall benzodiazepines wich for me are the culprits of my lupus trigger :( just because of a misused :/ I am sure. Day before switch with benzo all was good night after the switch all the symptomes appeared but I was able to go outside burns was after sun exposure and it was Summer. Now at the moment very strong and since february march :/
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u/Positive-Comment-207 1d ago
I’m not sure about the drug side of things but I do take Plaquenil, Cellcept, and Predisone with Benlysta injections to help calm my symptoms down. They’re steroids and immunosuppressants. I would definitely talk to your doctor about starting steroids for inflammation. However everybody is different and it’s hard to find the right “drug cocktail”, I’m still trying to find what works. But the medicine that I do take, with a balanced diet and exercise works enough for me to function
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u/matt171290 1d ago
Yes even doctors don’t know they say it’s possible overall for the lamictal but I don’t know why. Apparently it could be a sort of «immune exciting » drug for some people 🤷♂️ Yes it’s why this illness is terrible it’s because of the lack of « real » treatments :( those are not bad but patients and even doctors admit it’s not good enough yet :(
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u/Bostonian_cunt Diagnosed SLE 2d ago
I was in this exact situation at 16 - unable to go to school, get out of bed, etc. because of the pain in my joints and the brain fog + fatigue - I can tell you that it gets better tho! I am now 21, stable on meds and I can live a very normal life - I know how exhausting fighting for yourself in this medical system can be (assuming you’re in the US) but I promise there are incredible physicians out there how want to help!! Imo try Circle Medical - it’s an online telemedicine service that can order labs to get to the bottom of this and get you the help you need!! They were the ones who got me a rheumatology referral and ordered the labs I needed to justify it to my insurance lol! They also got me on my first meds - all while I was essentially bed bound!
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u/Honey_Comb2334 Diagnosed SLE 2d ago edited 2d ago
This is where I am too. I’ve been here for almost 3 years. I am now 28yrs old. Everyday my body feels like it’s dying. I’m in So much pain and so sick. I have no life to speak of. Just existing and Unable to function. I hope we both find a treatment plan that brings our functionality back. Hold on for the hope that things can get better even if most days, if not everyday, we just want it over one way or another. I’m sending you all the love and hugs I can muster. 💕
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u/cadie0828 Diagnosed SLE 1d ago
I’m so sorry you are in so much pain. I’ve been there, bed ridden, in so much pain that I could not move, needing help to go to the bathroom, bathe, put on clothes, eat, drink, the works. Lots of stuff that I’ve done to improve: prednisone, plaquenil, walking, light exercise and then weight training as I got better. And now, Saphnelo, an infusion that I get once a month for 30 mins. It is a GAME CHANGER. Talk to your rheumatologist and get the drugs that will help. You can get through this. You are stronger than this and we are here for you. Sending you love and a hug. Message me if you want more specifics on what to ask for and getting this covered by your insurance.
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u/incensesmokee Diagnosed SLE 1d ago
me too i’m 22, missing out on so many amazing opportunities :( i’m losing friends
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u/InvestigatorOk2588 Diagnosed SLE 22h ago
I’ve lost friends as well— But if they left you, they weren’t your friends to begin with
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u/XanaxWarriorPrincess Diagnosed SLE 1d ago
I'm so sorry. It'll get better once you find out what meds work for you.
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u/Rare-Candle-5163 Diagnosed SLE 1d ago
I’m so sorry, this is an awful way to feel at such a young age. My illness journey started when I was very young too, I was around 15 when I was diagnosed with my first autoimmune disease. I’m 38 now and I have 8 AI diagnosis. At I’ve felt like I was barely surviving - never mind living.
Please try to find some hope, even just a glimmer, that things will improve. I’ve had periods where I’ve been incredibly unwell, in hospital in high dependency, and I’ve had other periods where I can travel and live a full life. I’m never not symptomatic, but there are periods where they can be managed enough to give me some normality.
What treatments are you on for lupus? It sounds like you haven’t found the right one yet. My symptoms were as severe as yours, but with a lot of trial and error I’m seeing some improvement now. I still don’t feel amazing, but I feel good enough to have some of my life back. Do you have regular reviews with a rheumatologist? It sounds like you need to speak to one about your treatment options.
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u/XOceanSkyX Diagnosed SLE 1d ago
I was in the exact same position when I was younger. The pain could be so awful sometimes, it was hard to even describe it to my friends and family. Despite this though, everything can get better I promise you!
There are some amazing rheumatologists and doctors out there that can pick the right medication and treatment plan for you. Do you have a therapist? There is a light at the end of the tunnel I promise you. Just take each day at a time. Have you talked to your rheum/doc about your pain?
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u/SheedaBee1 Diagnosed SLE 1d ago
I was the exactly the same way when I 1st got diagnosed at 16. I've now had lupus for almost 27yrs. I used to be fatigued and in severe pain constantly, seems like almost daily and at one point was taking tramadol, until I made some changes.
For years I didn't really follow a specific diet and would just eat anything and everything that I used to eat before I was sick. Fast food, Chinese food, processed foods and junk food. The doctors never would admit that diet played a part in how you feel with lupus. But after years went by I realized it had a lot to do with how I was feeling and the flares and pain that I would get.
I noticed that right after eating red meat I would have severe pain. Also after eating Chinese food or stuff with MSG in it. I noticed it after eating nightshade vegetables as well. So I did an overhaul with the foods that I eat. I cut out red meat, limit the amount of processed foods I eat, stopped eating Chinese and fast food, starting eating more natural and organic foods fruits and vegetables. I also limit the amount of nightshade vegetables that I eat since I tend to get joint pain at times when I eat them.
Also since protein can cause strain on your kidneys I limit the amount of protein that I eat. For instance sometimes I only have meat 2 or 3 days out the week. And if I do eat meat, it's lean meat like extra lean ground turkey, chicken breast or fish. This made a tremendous difference and I no longer suffer from severe bouts of pain and only have joint pain here and there, mostly due to over exertion. Not sure if you have tried any of this but just thought I'd share some things that has worked for me.
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u/Fiddlin-Lorraine Seeking Diagnosis 1d ago
I’m in the beginning of my disease (I think i’ve had it for several years but finally landing on what they think is MCTD) and also taking Tramadol because I can’t take prednisone or NSAIDs. Tramadol makes me sick and anxious 😥 I thought of calling my nurse but I’m afraid they’ll think I’m pill-seeking. This disease is so frustrating.
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u/Beags428 1d ago
Have you relayed these feelings to your rheumatologist? I know I went through this and I called my doctor and she saw me right away, had labs done, and added medications. It really improved a lot. I still have some bad days, but she also put me on an anti-depressant which actually not only helped my mood but helped with pain.
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u/Clean_Juggernaut4366 1d ago
I'm so sorry you are going thru this 💔 I have also wanted to die during a flare up where joint pain made it imposs to function around 20yrs old, but I'm so glad that I came out of it eventually. I hope you know how lucky the world is to have you in it! Even though we live in a society that bases your worth on what you can do/accomplish we are far more precious than that. Personally, finding the right meds, making major lifestyle changes, and leaning into my faith are what made the difference for me and helped me believe there was meaning even in all this suffering 💛 I hope you can find the key ingredients that help you survive this moment in time and give you hope in a future. One thing I do know is that your life is worth living and fighting for and you matter. Your existence adds such value to the world even if you can't see it right now. Sometimes you can't see out of the pain you are in, but there is so much ahead of you that's worth continuing to fight for better treatment.
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u/No-Journalist-6099 22h ago
this worries me so much, I think my 16 year old daughter may have Lupus and we are set to get some bloodwork done. I am not even sure I will tell her that it is Lupus if it is until I have to. I don't want her to have no hope of a future. I am so sorry you are suffering. I became chronically ill at 40 but can't imagaine how hard it is being so young. Do you have a therapist you can talk to? Also for fatigue have you checked iron deficiency? Low ferritin iron can cause a whole host of symptoms that can contribute to fatigue.
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u/Purple-Ad6380 1d ago
Try to get to the root cause, a bad diet, breast implants, tattoo ink, food allergies and other environmental factors can be at the bottom of this. Get a good Hepa filter to purify the air in your bedroom and really watch what you put into your body. Also remember that doctors don’t try to cure people, there isn’t any $ in that and it is too profitable to keep them locked into their system for the rest of your life.
So many people are suffering unnecessarily with things that could be cured if their doctor went after the cause of the problem. A friend of my sisters was diagnosed with lupus by one doctor, MS by another, Sjodrens disease by another and in the end she got her breast implants out and everything went away. Every doctor said it was hereditary and not one even asked her if she had any foreign objects in her body.
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u/Powerful_Engine_6280 1d ago
Oh for the love of god, stfu…”get to the root cause”. The root cause is having the damn illness.
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u/Fiddlin-Lorraine Seeking Diagnosis 1d ago
How do people like you even end up in this tiny corner of quora?? You are spouting nonsense bullshit and it is SUPER offensive to those of us who struggle with serious autoimmune disease on the daily. Shame on you.
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u/Purple-Ad6380 1d ago
Sorry…I was just trying to help based on things I have observed in talking to hundreds of people about auto immune issues. I know people that have been cured of things by changing their diets or removing things from their bodies that the body didn’t want in them. I meant it to help, not to offend anyone. Sometimes we have to be our own advocates because doctors don’t always see the entire picture or ask the right questions.
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u/phillygeekgirl Diagnosed SLE 1d ago edited 1d ago
u/purple-ad6380.
If you don't have lupus, don't give advice here.
This is how we feel about it.
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u/Organic_Advice_4979 Diagnosed with UCTD/MCTD 2d ago
Sendings hugs 💜 I can relate, it’s like I’m barely functioning. I’m hoping when I find the right treatment it will start to get better.