Life With Lupus

Feeling very alone


I am feeling alone and depressed because of my pain and other symptoms.I get no support from anyone and trying to get people to understand what im going through is very hard.I once tried suicide because of the pain now this was before i saw a rheumy and lupus was mentioned to me by my gp.I have all the symptoms of sle as well as dle.My skin hurts so do my joints which are swollen and my muscles are sore as well,heat intolerance,brain fog,extreme faitgue,migraines,heart issue kidney problems, gallbladder problems,stomach issue,Sjorgens syndrome.I also have hair loss and a dmamged womb.Sorry for the wall of text but thats why i think i have SLE oh and seizures.I could use some support right now as im finding it tough since coming off plaquenil.


I’m so sorry for your feelings. It sounds very much like me! I have pretty much all you have as well as a rare form of heart disease. They believe it developed from lupus. That one had it over 20 years, and heart disease finally struck me down 4 years ago. I’m on best rest half the day. One outing will do me in. It’s sad, and I’m mad. I found a great psychologist who helps a lot. She listens and helps work decisions out and how to talk to Dr’s to try to get the best quality of life vs Dr’s think about quantity I think a lot. My Rhym told me to not plan on even feeling a bit better for at least a year. So I hear you. It’s awful and frustrating. Do you have family at home? A supportive partner. I do, But he’s maxed out on stress. And I have teens home who are stressed. Hang in there. Rest and know there are those like you here❤️


Hi Queenpink, I am sorry for all that you are suffering with. Your Lupus is really attacking your body and it sounds like the rheumy took you off of Plaquenil because of the kidney issue. Is there anything they can give you to at least alleviate some of the symptoms? I am still on Plaquenil so unfortunately I cannot offer any advice on that.

For your mental health though, it sounds like you could use some in-person counseling to deal with what you are going through. If you have a YWCA in your area, they may offer counseling on a sliding scale. If not, your county should have a website that shows the resources they have for mental health that would also be available on a sliding scale. It is common for people with Lupus to have depression. Seeking help for the depression is one thing that isn’t controlled by the disease and may be a perfect compliment to the advice you get from others that respond on this board. Unfortunately, this board isn’t very active so I don’t think you will get a constant stream of advice. Good luck to you. I wish you the best.


QueenPink, I hate hearing that you are suffering all this misery. Have you gone to your GP and discussed how awful you feel with him/her? I’m sure there must be some resources for people who feel as you do: you’re not alone. But finding some in-person support takes a bit of searching.
Thinking of you


Thank you all for your lovely replies.Im sorry elizabeth that you are homebund like me.Im glad you have a supportive partner.Im surrently single and non supportive family.

I never thought of that kim,the kidney issue that is.In fact im getting an ultrasound of my kidneys,pancreas,liver gallbladder and large intestine.Basically all the major organs to figure out the bad stomach pain.I am in ireland so there isnt a YMCA here.I do go to a mental health centre but i dont find it helpful.I’m on a high dose of antidepressants already and i have a shrink.

Thanks for your reply seenie and your kind words.My gp wont do anything for me he is decreasing my meds instead of giving them to me sigh


Hi Queenie.
I’m sorry for your issues especially for your non-supportive family. I have a very supportive family and friends.I was diagnosed with SLE 4 years ago, and I am OLD. Old to be diagnosed, 75. I am grateful for a good support system. I don’t have any depression. I am however going through it in the family. My husband has had 2 heart attacks in the last month and HE is having depression issues. GP has tried one med which didn’t work and is on the second one. I don’t have time to be depressed.LOL. I am on plaquenil for, mainly mouth sores. I have sun sensitivity, hair loss, mouth sores, skin issues, pulmonary fibrosis, slight kidney issues, brain fog exhaustion, joint issues, can’t think of the name but cold

fingers and toes.

I’m not too bad.
I’m sorry I can not be of too much help finding help for you, but keep looking.

We’re always here for you.