Dealing with Fatigue from Lupus: Tips and Advice

does lupus make you tired alot

Hair Falling Out with Lupus or PCOS

Has anyone else with lupus or pcos started facing their hair fall out? It’s only a little but every time I touch my hair pieces fall out

Arthritis Flare Up Causing Severe Muscle Spasms

I have not had any sleep last night due to an arthritis flare up in my neck. It is causing severe muscle spasms in my left shoulder blade area. I took a muscle relaxer last night with no success.

Looking for Support with SLE Diagnosis

Hi! I recently got diagnosed with SLE and my dad told me about this app so I thought I would give it a shot to try to find people with the same condition :)

Dealing with Lupus-Related Airway Inflammation

I went to the pulmonologist today was told I have inflammation of my airways which is most likely caused by my lupus.. can someone message me to get my mind off of it

Feeling like I'm on a boat

Does anyone else often feel like they’re on a boat? A swaying, rocking type of feeling. No spinning but I do get dizzy sometimes if I try to lock eyes on something when it’s happening. It’s been a daily thing for me lately 😒 Annoyed

Considering Stopping My Medication

I’ve been thinking of stopping all my meds. They all work and help, but I’m just so tired of taking medication. I just don’t know how that would affect me. I know I would discuss with my Dr first.

What symptoms do you experience with Lupus?

What symptoms do your experience? I was recently referred to a rheumatologist and am trying to decipher what may be going on with me, and I believe I may have lupus. I have had several episodes per year for the last several years with seemingly random, unexplained symptoms. They sometimes seem to be triggered by stress but other times it seems completely random. Sometimes I’ll develop pain in EVERY joint that gets worse with movement, accompanied by a feeling of weakness in the joints and pain sensitivity in my joints (ex. Knocking on a door with a standard intensity and being meet with sharp, shooting pain in the knuckles). Other times I’ll have trouble breathing or heart palpitations for a few weeks. These episodes are often accompanied by what I believe is a butterfly/malar rash (though I’m not sure). Since lupus can affect many body symptoms and cause many different symptoms what symptoms do you experience? Additionally do you have any comorbidities (conditions that may be related to or worsen your lupus) accompanied with your lupus?

What Does a Butterfly/Malar Rash Look Like?

Do you have a butterfly/malar rash, and if so what does it look like? I cannot tell if the red/pink on my checks is a butterfly rash or just regular blushing. It difficult to compare to photos online because obviously the photos online are going to show more severe cases. I always have a bit of natural flush on my checks but sometimes it becomes more severe, and the shape changes (from my normal circular spots on my checks to a shape more reminiscent of a butterfly rash). It almost appears as if I was wearing goggles and didn’t put on sunscreen so I got a sunburn under my eyes. It doesn’t hurt, but it does feel warm, despite not having a fever. When it does appear it tends to be accompanied with other autoimmune adjacent symptoms like joint pain. So if you do have a butterfly/malar rash, what is it like? Does it look like the severe pictures online or is it different? If you have a natural, constant flushed coloring, does the coloring or shape appear different when you have a butterfly rash?

Struggling with Lupus: Seeking Advice

Currently under assessment for lupus, it’s almost certainly an immune system disorder I have. Been struggling with it for the last 3 years I think triggered by stress, my fatigue is so bad my life has basically stopped, I was surprised when my doctor suggested lupus as I’m Caucasian and have heard it’s uncommon in my race and I haven’t experienced a facial rash of any kind, but the more I look into lupus the more I relate. My main concerning symptom as of recent that lead to a lot of blood work is chest pain and tachycardia which had me in the emergency room, I’m only 19 I have very low blood pressure usually but a high heart rate and I’m just tired, want to know how to get better.

Positive ANA test not required for Lupus or RA?

Hi friends! I was wondering is anyone has lupus or RA without a positive ANA test. After my cardiologist appointment today there is some talk about these things because of some pulmonary hypertension which can be symptoms. My doctor said you can have these without positive blood work (convenient) and was wondering if anyone has experienced this? I was told if this was the case we should be able to reverse my new issue with treatment of these diseases but I was wondering if anyone else has a similar experience! Thanks and I hope everyone is having a great day! ❤️

Has anyone tried benlysta for lupus?

Thinking about trying benlysta for lupus has anyone tried this medication?

Dealing with Chronic Foot Pain

Hello everyone!!.. I have been in a lot of feet pain. My ankles and heels hurt so much. I’m suppose to be using orthotics to help with the pain but they only make the pain worse. I’m on my feet all day for work and I can barely walk by the end of the day.

Struggling to Find Medical Help

I'm having a hard time finding specialist & doctor

Pregnant with Lupus and Asthma: Seeking Advice

I am 23 weeks pregnant with lupus and asthma. my asthma has been well controlled for the last 6 years without meds but since being pregnant it has flared up. I was diagnosed with lupus this year but I feel as though I've had it for a few years with a positive autoimmune blood test. can anyone shore their experience with lupus and pregnancy?

Chemo for Lupus: What to Expect?

How common is it for people to go on chemo for lups? I'm newly diagnosed and I'm anxious about what they are going to put me on.

Lupus and COVID: Seeking Advice

Anyone have lupus and covid?

Struggling with Chronic Illness and Loneliness

I have SLE Lupus, R/A, Sjogens disease, fractured spine, kidney, heart and lung issues. Even since I got sick I have noticed not one friend is left. All I have is two woman I never met in my life but on Facebook. It would be nice to make friends.

Feeling Alone with Lupus: Seeking Support

recently i’ve felt so alone in this illness. i know so many other people struggle but i feel that i cant connect with people who are dealing with this around the same age i am. i feel like i’m failing because i can’t always do the things that most teens can. my mom has RA and can struggle to understand that my lupus is usually not painful like her arthritis. i mean yes i have joint pain and migraines that can both get pretty bad but it’s been going on for so long that i’m used to it. and don’t get me wrong it can be completely dehumanizing, i just feel so many other symptoms recently i’ve been really struggling with the sick feeling that lupus gives me. i just feel blah and the unpredictable changes in my symptoms is what really has been getting to me. it’s my senior year of high school and i want nothing more than to know i can make it to events. does anyone else struggle with this or know of nationwide support groups for teens or young adults? 🤍🤍

Looking for advice on new medication

been researching the new medication bentlysta... Has anyone tried it? does it have reduce flare ups? this recent flare up has lasted a month so far with no break and im so over it. i wanna talk to my dr bout this meds but i dont even know if it will help....