Skip to content
My WebMD Sign In, Sign Up
Lupus Psychosis HELP!
avatar
An_206442 posted:
I have Systemic Lupus Erythmatosis, Fibromyalgia, and Rheumatoid Arthritis. I was diagnosed with Lupus when I was 19 but I have had symptoms since I was 10. I recently discovered that along with terrible fatigue and constant pain, I have Lupus Psychosis. I lost my job, my license, and I am currently battling to remain in school. Lupus has caused a drastic change in my life. I went from being an outgoing and active person to hitting rock bottom with barely the strength to get out of bed. I am looking for anyone who has experienced Lupus Psychosis and support groups. I have a wonderful doctor and a supportive fiance but I really need to get involved with other who have Lupus and can share their experiences. If you have experienced Lupus Psychosis I could really use your advise and help. I feel so alone and hopeless. I am as happy to give support and share my knowledge as I am to receive.
Reply
FirstPrevious12NextLast
 
avatar
jerandfo responded:
I do not have Lupus Psychosis but I am a Psychiatric nurse and have seen a few people with your diagnosis and honestly they were not as coherent as you are, and you don't sound psychotic at least presently. It's not uncommon to have emotional problems with lupus. I strongly suggest that you look for a Lupus support group or if you can't find one, call the Arthritis Society and ask them to refer you to a support group. Also ask your mentl healt professional for a referral. If you have a local Lupus Society check that out too. I also have had lupus for many years and having periods of depressionandbeing treated with antidepressants was extremely helpful. But you are right to feel in need to talk with others with lupus. Believe me, you are not alone and things will get better. Hope this helps. Flo
 
avatar
jerandfo responded:
My previous note had an error I DO HAVE lupus and I know what you're going through. Flo
 
avatar
sarahscafidel replied to jerandfo's response:
I have begun seeking help but unfortunately it seems to be a waiting game. My issues of psychosis seem to peak at moments of high stress. I spoke to my doctor but she's the only rheumatologist in the area and thus is very busy. It's been a week and I still have no treatment plan. I saw a psychiatrist and she said my issues were medical and she would not treat me. I've never dealt with stress well but this is ridiculous. I feel like I'm in limbo. There are no local support groups for lupus. It seems Louisiana is off the map in regards to lupus. I'll definitely try your other suggestions. Thank you so much for your help.
 
avatar
Elizabeth_WebMD_Staff replied to sarahscafidel's response:
Hi & Welcome Sarah,

You are right, I could not find much in Louisiana. I did want to pass along what I could find.

Lupus Foundation of America -
If there is no chapter located in your state or region, please contact the National Office for assistance.
Office: 202-349-1155

Louisiana's Walk for Lupus Now - Search this group to possibly network for others near you.

Elizabeth
 
avatar
sarahscafidel replied to Elizabeth_WebMD_Staff's response:
I am definitely thinking about starting my own support group after I get stable with my current situation. It is so needed.
 
avatar
Summerfield responded:
I was diagnosed with Systemic Lupus Erythamtosis a year ago. I am a 29 year old female and I have had a very rough year with my Lupus. I have dealt with extreme arthritis, pain and lupus psychosis. I am looking for a support group and people to talk to about my disease. What is your experience with Lupus? Have you found a Lupus community?
 
avatar
An_250025 responded:
I've recently been diagnosed with Lupus, Addison's, and a slew of other issues, but I suspected lupus for a long time. I've had periods of time, (I guess the flares) where I felt really bad, and mentally incapable to do anything. I've managed to get through it, but this last one was so bad, that I'm not sure I could survive another episode as severe as it was. I have absolutely no support, and fear it happening again. the pain and fatigue, as bad as it was, is nothing to the mental aspect I experienced. It was absolutely horrible. I don't know what I could say to help anyone, as I'm still reeling from all of this. I'd help in any way if I could or can. I don't know where to get support.
 
avatar
Meheartie responded:
I've recently been diagnosed with Lupus, Addison's, and a slew of other issues, but I suspected lupus for a long time. I've had periods of time, (I guess the flares) where I felt really bad, and mentally incapable to do anything. I've managed to get through it, but this last one was so bad, that I'm not sure I could survive another episode as severe as it was. I have absolutely no support, and fear it happening again. the pain and fatigue, as bad as it was, is nothing to the mental aspect I experienced. It was absolutely horrible. I don't know what I could say to help anyone, as I'm still reeling from all of this. I'd help in any way if I could or can. I don't know where to get support. sorry for the re post. didn't intend to post anonymously.
 
avatar
kadiddlehopper responded:
Hi,

I am an administrator of a Lupus Group on Facebook, it all love and information. We love to help one another and do so daily. We would love to have you join us, but you will need a facebook account to join. Our motto Is No Judge Lupus Group Only Love ~ which is the Name of the group too.

If you want please look us up, we do not allow any negative feedback at all, which is why our group got started.

 
avatar
kadiddlehopper replied to kadiddlehopper's response:
I forgot to say that Our Group is what is called a Closed Group and only members can read what is said and asked in the group. For sometimes people do not understand our difficulties and we need to vent and we support you in this too. We discus medications and symptoms a long with getting to know you as a person.
 
avatar
kadiddlehopper replied to kadiddlehopper's response:
If you want to join Please let me know here so I can add you!
 
avatar
obxcats responded:
My heart go out to you! I know exactly how you are feeling. It is a rough road to say the least. I had symptoms for years before I was diagnosed. I also lost my career in 2007 which I started in 1982. I wasn't diagnosed with systemic lupus til 2011. From 2011 to early 2012 was very tough but things slowly got better as the meds were tweaked and we found the right mix. Im not saying that everything is fine now but life has become more normal for me. Most importantly you must remain positive and never give up. Then educate yourself as much as possible. This is a great place to start but its only 1 tool in the toolbox. The more tools you have the better you can do the job.
Good luck and remember we are all in this together. Feel free to continue to post on this thread and get to know the people here.
 
avatar
mommawithlupus87 replied to kadiddlehopper's response:
I would love to join ! my name is Carla Otero
 
avatar
obxcats replied to kadiddlehopper's response:
Im very interested in joining a group. Can you please give me more details on how to do so?

thanks


Featuring Experts

Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More

Coping
With Lupus

WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
at work, or with family
and friends.
Visit Lupus Day2Night

Helpful Tips

Minimizing steroid side effectsExpert
It is likely that most lupus patients will at some time be taking steroids to control some aspect of their disease. In order to minimize ... More
Was this Helpful?
78 of 108 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.