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Honeybee
27 Mar 2019
My doctor keeps telling me we have to wait before he can officially say i have lupus and it sucks so much. I have a lot of the symptoms and i know i have it because my body is telling me i have it but it’s so stressful that no one understands what I’m going through. I literally have no one and i just want to cry with the fact that i go to all my doctor appointments alone and i always leave crying. I just did more blood work to see if anything has changed since I’ve developed more symptoms and i can’t shake the feeling of loneliness away. I hate it !!!
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Octopus
3 Apr 2019
How long did it take everyone to get diagnosed ? It took nearly a year for me. Took seritinan syndrome shutting down my body and nearly losing my life before doctors even took the actions to do proper testing to determine my sle and lupus nephritis -.-
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Sled
11 Apr 2019
We found out 2 yrs ago my daughter has lupus , her kidneys failed her heart, her lungs , and told that she will be doing dialysis for the rest of her life - we were in shock “ what is this “ two weeks later the kidney specialist asked to speak to me - her kidneys were alive and how did it happen , he showed me the numbers two weeks before and they were not functioning, I told him the elders in my community told me about chaga tea - we drank it as a family before she was diagnosed with lupus . We stopped a few months before she went to the IWK , he read up on chaga tea and health benefits he said when u think she’s strong enough give it back to her , when we left the hospital 4 months later her kidneys were almost 40 % working , today it’s 93% functioning. Her heart pills went from 3 pills a day to a half within 6 months , u c I put her back on chaga tea and a good friend has Wagner’s disease who is drinking 3 cups a day , my girl a cup a day , they drink ginger root tea which helps take the pain away , and after being on steroids for 2 yrs they r taking her off of it , her body is working better then before she knew she was sick . She is 17 and every day she drinks it :) I wanted to share
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Violin
15 Apr 2019
IAM here for you ❤️
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Sled
15 Apr 2019
Ty :)
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Maple Leaf
25 Apr 2019
Has anyone been experiencing hair loss bc of lupus? I’ve lost about 50% of my hair at this point and i’m only 21 😔. It’s non scarring, but I guess just having a lot of autoimmune conditions makes my hair really thin. Often times it makes me really depressed! Any advice?
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Maple Leaf
27 Apr 2019
Hello people with lupus I got questions. I’m 20 years old and I’m getting tested for lupus in a month. Do you guys get intermediate arthritis pain?? Does to feel like your skin is burning??
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Hedgehog
27 Apr 2019
Slay 🖤🖤
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Drum
29 Apr 2019
So I was diagnosed with Lupus.... after years and years of misdiagnoses. I was actually relieved to finally put a name to it. ANYWAYYY while being diagnosed I had to take 3 months off of work due to really bad infections and flare ups. My boss promised me to keep my job and all that. (I’m a dog groomer) now, keep in mind Being a dog groomer with lupus is very hard it’s a very tiring job to begin with I have to lift large animals be able to control large aggressive animals and I have a bout eight animals to do in eight hours so when di being a dog groomer with lupus is very hard it’s a very tiring job to begin with I have to list large animals be able to control large aggressive animals and I have a bout eight animals to do in eight hours so when I did return back to work of course I work with all women so they believed that I had a three month vacation that I had to make up for it. All of them knew I was diagnosed with lupus and what Lupus is, and how it affects me. Long story short I started dating a guy they all had a crush on so they completely turned against me. They called me selfish for asking for help for a dog. They made people think I was stealing from them even though I haven’t been there in three months so I was completely alone, overbooked, it was Absolutely ridiculous. Finally I did what was best for myself and remove myself from that toxic environment that was just going to end up making me worse. That was Friday, tomorrow I have an interview at a high an absolutely ridiculous. Finally I did what was best for myself and remove myself from that toxic environment that was just going to end up making me worse. That was Friday, tomorrow I have an interview at a high end store. The original phone call I’ve mentioned to the owner that I do have lupus, and she told me it’s no problem at all , I will be the only groomer there ( so no drama/ stress) and an assistant AND I make my own schedule. It does get better. 🖤 enjoy a picture of my favorite groom that got me this job 👏🏼
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Sled
16 May 2019
So I got diagnosed with lupus 2 years ago and it is hard for me but you all probably know the feeling
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Hamster
21 May 2019
Hi I'm new at this app. I have lupus. I had mine when I was 16years. Somedays I feel like I'm drowning and something's I'm okay. I still don't understand it. My family are supporting but I feel like that they don't understand what is LUPUS. N I get pissed off easily.
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Evergreen Tree
2 Jun 2019
Nothing rids you of appetite like picking up the pieces to your heart after someone’s splattered it across the walls. But be mindful, you absolutely should not starve yourself; it’s destructive and won’t make you feel better
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Hamster
7 Jun 2019
Is there a cure?
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Mango
11 Jun 2019
Wisdo Team here! I am working to find more effective ways to spread the word about this awesome platform. If you are an Ambassador, Helper, or Guide and have five or so minutes to answer some questions, send me a private message. Looking forward to hearing from you :)
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Violin
18 Jun 2019
I honestly think I have lupus but idk what to do. I’ve seen several doctors but I keep getting “you’re too young” IM 20! And “you’re anorexic” and NO I’m not, I just keep loosing weight but idk if that’s related. I know google isn’t the best but I match 95% of the symptoms.. because I can’t diagnose myself with kidney issues.
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Honeybee
19 Jun 2019
So, I deal with this ‘common’ syndrome that is legit just like lupus. It’s called Sjogren’s Syndrome. My immune system attacks a part of the immune system that creates saliva, tears, and can effect how much fluid is in my joints. I get flares, I get hives and I’m very sensitive to sun. My doctor says it’s lupus, but I’ve always had these symptoms and before he said it was my syndrome. Does anyone know if they go hand in hand?
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Owl
26 Jun 2019
So I have a friend who has this.. what exactly is it and also she said she could die from having a child at her age? Why is that
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Popcorn
1 Jul 2019
My mother has Lupus and she rarely does anything to help. I constantly try to tell her things but she will not do what she needs to do to stay healthy. Any tips or anybody that went through something similar? Please help
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Deciduous Tree
2 Jul 2019
Hey
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Tiger
4 Jul 2019
Hi. I have Lupus. My feet and hands bother me. They feel sort of numb but it’s not exactly numb. Ever experienced this? What is happening?
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Chestnut
9 Jul 2019
Me too.
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Grapes
22 Jul 2019
Hey, I have lupus and hypothyroidism from when I was 9 years old (I'm 19 now), I have dealt with a lot of joint pain in my life. I started having anxiety since 2 years ago. And now I just found out that I have celiac disease in which I have to be in a free gluten diet that I just can’t accept(no pizzas, pasta, burgers,etc) it’s depressing me. No one from my family understands what I’m going through. I feel what I have are all linked together what do you think.. Is anyone going what I’m going through? Any advices?
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Hedgehog
1 Aug 2019
God morning lupus people
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Hedgehog
1 Aug 2019
Hello everyone me new here
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Tiger
2 Aug 2019
Anyone else riddled with rashes? I have rashes breaking out all over my body. It’s really rough right now. One rash is in the crack of my bottom ☹️☹️my butt is🔥🔥 another is in my belly button. More on my inner thighs, about three tiny patches on my legs and across my face. I think what set it off was artificial sweetener which I’m allergic to. I used all the dermatologist creams and nothing helped! I tried coconut oil which has helped in the past. Didn’t this time. I bought several new creams ($60 worth from the supermarket) and tried them and I think it’s drying up. Something called PRID (a homeopathic drawing salve) is what I put in my naval. I realized this is getting me depressed. I’m so itchy. Scratching your butt is embarrassing 😩
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Violin
4 Aug 2019
Anyone want to join my chat room called Raynaud I could use some support/tips
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Mushroom
4 Aug 2019
I've just recently been diagnosed with hidradenitis suppurativa and I've had it since I was 14, a freshman in high school. It was misdiagnosed many times with a staph infection and it was so annoying because I knew it wasn't a staph infection I just had no idea what it was. I am having an intense flare up and I need tips and tricks to lessen the flare ups. I'm on antibiotics right now but I am so tired of taking medication for it and it not working. Reach out if you can help.
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Popcorn
13 Aug 2019
My older brother has Lupus and antiphasic syndrome since he was 13 years old. I worried about him all the time. He or me haven’t meet anyone with the same conditions as him. I wished he can cause then they can understand the pain they go through together.
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Sun
19 Aug 2019
Hi everyone! I'm new to this group. I'm 26 yrs old and ive had lupus since I was 9 yrs old.
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Palm Tree
10 Oct 2019
hi everyone; i wanted to seek advice as i have been appearing in this rash the past year or two over my face, it’s a dry crusty rash and i’ve had multiple diagnosis and misdiagnosis and have now been referred to a skin specialist and wanted to seek some support and advice as i have a strong feeling it could be lupus
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Deciduous Tree
15 Oct 2019
Wanted to share I have been eating a plant based diet. Ever since then I have been in remission
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Popcorn
29 Oct 2019
So I don’t have lupus but I’ve had an autoimmune disorder since I was maybe 11. They couldn’t diagnose me with anything. They said my AA was high and my body was attacking myself sometimes after I got certain sicknesses but they couldn’t give me immunosuppressants because my immune system wasn’t elevated enough so all they could do is treat it whenever it flares and every time I get sick I get so scared and paranoid because it’s a full body rash and leaves scars everywhere and it makes me so self conscious it just sucks that I don’t even have a real diagnosis.
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Tiger
5 Nov 2019
Does anyone know of the best way to keep yourself energized throughout the day? I feel like I want to stop drinking caffeine because of anxiety spiking... But I can’t stay awake.
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Tiger
19 Dec 2019
FINDING BALANCE ☯️
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Dolphin
20 Dec 2019
As I write this I'm sitting in a hospital bed (night 3) because my lungs have crapped out on me for the third time this year. Hospitalizing me twice. Does anyone else on here deal with Pleurisy? If so, how do you cope with the painful breathing? It's exhausting.
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Trumpet
5 Jan 2020
Hello ! Anyone here diagnosed with myasthenia gravis ? I’m constantly tired these days and I’ve had ptosis (droppy eyelid) for a long time now. What’s a definite clue that I should go and get myself checked ? I also would like to hear your stories if you got some 😉
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Violin
3 Feb 2020
😅
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Violin
11 Feb 2020
Gratitude helps with lupus survival
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Chipmunk
21 Feb 2020
Anyone available I have some questions?
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Popcorn
21 Feb 2020
I don’t have lupus but I have this untreatable disease that doesn’t even have a name in which my toes have scarring and kind of similar to eczema and fungus around them but it’s none of those. It gets worse when exposed to water. I have gone to many many doctors they all said it’s An unknown disease and there’s no treatment. They say it’s genetic. This really impacts my confidence and I can’t even wear sandals... has anyone had a similar situation? How can I put up with this 😔
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Tiger
6 Mar 2020
Anyone experienced weakness or heaviness in one of your legs? My right legs has felt heavy as if it’s hard to move it around for over a week. I know I can/should see a doctor. Just wanting to know if anyone else experienced this before? I’ve had it before. But I can’t remember it being unilateral.
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Grapes
14 Mar 2020
I don’t have lupus but I have scleroderma and I wanted to talk to people in a similar situation.
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Full Moon
25 May
Is this group active?
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Mango
28 Jun
Hi if you want to keep this group active you need to post things . How are you all doing ?
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Full Moon
5 Sep
Hi guys.. My mum has lupus and things are getting stressful for her at work. I'm scared shes going to have another flare up. Any tips on what I can do to help prevent it? Or what to do if she does have one?
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Tiger
9 Sep
I’m in the process of being diagnosed currently. My doctor is fairly sure I have lupus but I’ve not had official confirmation yet. Is there much they can do to help? My main issues are rashes, fatigue, weight gain, painful and swollen joints, inflammation of my lungs which causes breathing issues, mouth and eye ulcers and inability to regulate my body temperature so I’m always either freezing or sweating profusely. Does anyone know how I can aid any of these symptoms? Because of covid the hospital is (understandably) taking longer with tests and appointments. I’m just eager to try and help myself as much as possible whilst I wait to see more specialists
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Popcorn
26 Oct
My mom has lupus and I got on here because I want to get a better grasp on what she goes through. So far I know she has lots of teeth problems, is taking a very high dose chemo drug, her legs hurt constantly, and she cant overextend herself. She seemed to be so healthy and then the issues started to just appear overnight. It's really sad. And I'm really upset about it, so please no mean comments about my mother or myself.
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Sunflower
14 Nov
I have not been diagnosed, but I am starting to feel like I may have some type of autoimmune disease because I have been dealing with many symptoms for years. I have been to many doctors and many will simply say "this is caused by your depression" or literally "I don't know how to help you."
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Violin
26 Jan
Hi everyone. I have a couple of questions. 1. How do date or have a relationship with lupus? 2. I had my new boyfriend tell me if he didn’t genuinely love/want me for me he’d left me when I told him I had lupus. I’m not sure if that’s an insult or what. Please help me sort this out before I break up with him for saying that.
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Popcorn
Wednesday
💫PMA💫
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Evergreen Tree
Saturday
Why aren't there any recent developments in this group. My daughter was diagnosed with lupus three or four years ago and it has been a struggle for her and I don't really know how to help her I don't know that much about lupus other than what I found on the internet I was hoping to find someone I could talk to in this group. Maybe you can help me.
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