Hi,
I’m 30 years old and I’ve been recently diagnosed with Lupus. At the beginning flares were okay but this time I got it really different with a lot of bone and muscles pain, I even can’t sleep at night because of the pain. I have headaches and the most recent thing that I started to forget things that are very recent; like part of the sentence that I’m thinking about. I feel like some words are just erased from my brain. Also, when I take notes during my class, I forget what the professor said. My husband thinks that I’m imagining this but I’m getting scared. Are all these symptoms of Lupus?
Hi Abby
I am having similar problems with joint and muscle pain. I am in pain 24 hours a day. Mainly, my back. I have joint pain as well. I am 58 and have been attending college since I was 35 or so. Recently I took a class and failed it. If you go to the OSD office, they are very helpful with everything. I go to ACC. My main campus is Cedar Park. They are so nice. They help me register. I can take my tests in their office. I have test anxiety, so I can take them at the office and have as long as Ineed.
I never feel good…but still try to get up and go. My family won’t really discuss it with me because I suffer from severe and chronic depression as well. I think they think it’s all in my head. I have a new Rheumatologist (sp) and he is so supportive. I have been mistreated by so many doctors in the past.
Thank you guys for the advice, it is really helpful.
I know how hard it is to me mistreated by a doctor. I have had this bone and muscles pain since three years and I went to too many doctors, no one knew untill now. One of the doctors I saw was laughing at me as if I make the whole thing up to get spoiled by my husband or so. Anyway, I just feel sorry for my kids because I’m on the bed all the time and can’t spend a lot of time with them.
Abby, we all understand your feelings. People judge us because we may look fine…smile…etc. When we say we’re tired, I must explain in detail. I say, “I don’t get tired like you do. I get tired as if you just lifted a ton.”
Hi Abby
I haven’t had any responses to my site, but I enjoyed reading yours. It seems that all of us are in the same boat. It’s so hard to be sick and look well. I have doubted myself so many times because of the doctors and my family. I have been sick long enough and have had too many symptoms and flare ups to not believe in myself. It is very difficult to carry on a normal life when you don’t feel good. I have always enjoyed good health, so I know that something is wrong. As I said somewhere (can’t remember) on this forum that we need validation that we are truly sick and not trying to get attention from our husbands, or not make it to work etc. I have one friend who understands my illness and listens. It means everything to me. I would love to hear from as many people as I can…Its a lonely place to be. I, fortunately, don’t have organ problems like so many people do. I have had a pet scan that showed I have a place in my brain that is narrow and fluid cannot pass normally. My doctor at UCLA said he usually only sees this on very sick people, like aids. When I take this info to another doctor…they say the pet scan is not accurate. I know that I am different than I used to be. My friend that understands, has known me for years and has told me that she watched my decline. Lupus has so many different faces that doctors don’t know what to do. I hope someone will reply to my site and share their fears and troubles with living with this disease.
I would just like to say that many of your symptoms are found and /or overlaps with fibromyalgia. I kept blaming everything on my Fm for 18 yrs and diabetes. I just thought some were indeed getting worse . It wasn’t until a total hysterectomy for a terrible level 4(highest ) endometriosis followed by a severe reaction to a med tha hospitalized me, that I KNEW thing were not the same. The brain fog comes with Fm also and both medical problems are increased with stress.
You may be dealing with a dual diagnosis
Wen, I am dealing with a duel dx for sure:
SLE, Fibro, COPD, Blood disorder Reynauds, gastro problems, depression and anxiety, fevers…you name it, I have it!
Is anyone on effexor?
I find these make some difference for me.
I used to be on Paxil but changed after my Hysterectomy as the Effexor often helps with hot flashes. It did help a wee bit with that also.
Yrs ago I was on Prozac but after a long time it lost it’s effectiveness and I went on the Paxil
Wen, perhaps I should change prescriptions because I don’t feel it is working anymore. I am supposed to be on 3 pills, but I went down to 2. At one time I even tried to stop taking them…taking less and less…cutting them…but then I would get a severe headache.
I have been on a lot of anti-depressants with no luck.
Hi Wen,
I was also on Paxil, prozac, lithium and so many other’s. I had side effects from all except the effexor, but I guess I have been on it too long. No, it doesn’t help me with night or day sweats at all. You’re lucky with that one.
Wen, I have to ask you an off topic question:
You have endometriosis and had to have a hysterectomy.
My daughter is trying so hard to get pregnant, but she also has endometriosis, not only on her uterus, but also on her cervix. She also has 2 fibroids that they can’t remove now either. (She previously did have surgery on the endo too.
She is 35. ) She was inseminated this past Monday, but the doc explained it only works 40%.
I am so nervous for her. The doctors asked her if I had to take any meds while pregnant with her, and I said, “No” plus I couldn’t take anything for pain either. She was tested for lupus and it was negative
My question to you is this: Did you have endo before you conceived with your children? If my daughter has a child, they also want to do a hysterectomy on her too. 
Thank you, Wen
Mel to tell you the truth I don’t know but probably.
I had my daughter and got pregnant quick…I miscarried after that and then never was able to conceive after that…I wanted lots of kids. Back then the doc told me I was too smalll to have carried my daughter (she was 9 1/2lbs ) He said Oh the bby must have pushed things all over the place…She was born in 79 and i was just turning twenty the next month. I belive now that the reason I didn’t get pregnant was because of endo. I went in for what they thought was a tumor and a fluid filled cyst on the ovaries but it was solid level 4 endo…they had to cut it away from my bowels bladder ect…and scrappe the pelvis…the surgeon said he hadn’t seen it that bad in a long time There was never any talk of endo in any way before I will pray your daughter gets pregnant and has a healthy baby.
Wen, thank you for telling me. In some small way, I feel better.
I’m glad if I could help at all
When I went to my oncologist yesterday, he told me now doctors are prescribing more than one anti-depressant at one time. He said it is much better to do that. He has recommended me to make an appt.