Lupus Support Group

This was all I could feel when the doctor came back into the room and asked me again if anyone in my family had anything I was not telling him, I said no, he asked if anyone in my family has LUPUS, I again said no, after he told me I have s1-s5 disks in my back that are smashed and have been for over two years now, he also told me i tested positive for lupus. I am honestly really scared right now. My son is now five years old and for as long as i can remember I have been having problems like I am not. I have noticed when my legs are bent that it looks like im missing muscle mass now. Things are really getting hard more me, i am in non stop pain, always tired, feel sick and its every hard to make it thro a day anymore. i go back on wen the 6th to find out where all it is effecting how bad and figure out what we are going to do. I am also in the middle of relationship issues. I am currently a college student, but I have in the last week dropped out do to fear of failing from all the new medical stuff. Can anyone here know how i feel give me a few words. I am so scared and not sure what to think or how to really act with others when they confront me on things. any info right now would help me. I have been going to the dr for so long with problems and with them shrugging me off for so long i started to think maybe it really was in my head.

H and welcome to the group. Learning that you might have lupus is scary, but was in your pcp that said this? Or have you been to a rheumatologist? Lupus should never be diagnosed just by lab work, the doctor needs to look at your past medical history and put all the pieces together. It can be very hard to do.

If you do have lupus, it can be controlled, but everyone is different. We all take different combos of meds. But, one of the worst things for lupus is stress. It does help to have a place ike this to come to where everyone understands what you are going through.

Alison

For me it was a big relief to finally be diagnosed at the age of 54 because it meant treatment and the possibility of having days when I could function better and not be in pain.

When I was raising my children in my thirties, they told me I was crazzy, put me on anti-psychotics and mood stabilizers which turned me into a zombie, and I was totally convinced that it was the truth. Down deep I knew that there was something physically wrong that tied it all together but I knew that no one at the clinic could help me with that. The only thing I really cared about was getting a good night's sleep. Year's later I found out I had pretty severe kidney disease and that one of the main symptoms is insomnia. I went to counseling to learn basic coping skills regarding everyday functions and how to raise kids. I tried to communicate to them that I had the skills but had no energy to function and all the pills made it so much more difficult.

In the year 2000, I met my husband and he told me it wasn't normal to pass out in the middle of the day and he started going to psychiatric appt. with me. The story is long, but the gist of it is that it took me 11 more years to get properly diagnosed and life is much better now.

I hope life gets better for you as well.

Hope

Wow Hope! What a long road to understanding and having some kind of relief! You are a strong women. Tanks for sharing your experience with us.

hisbabygirl...Hi and welcome to this fantastic support site, as you can see we have some wonderful, caring and compassionate members here who know what it feels like living with this illness on a daily basis. Ali is right, we do have Lupus but it affects each of us differently and even the meds.....have you seen a Rheumatologist? I know this disease is scary as I have been where you are....just know your not alone...were all here to help each other through this disease. Anytime you feel like crying, venting or just to share or ask questions please feel free to post often.

Hugs,

Eva

Yes,I have been to a rhuematologist he was the one who told me that I have it. They have rad blood work that tested positive in two areas, when I went to my first app with the rhuematologist he said that the test was positive for lupus. after the app they ran more blood work. he said that these tests took 10 days and that we would be able to tell where it was effecting? I amnot really sure what to expect at the next app since i will be getting the results from these tests. I have tried to drop as much stress from my life as possible. My son is going to day care for several hours three days a week, I have pulled myself from school classes right now and am trying to just let go of things. I feel that if i am going to be able to fight this I cant let the lettle things or most of the big things get me down. If i cant change it why stress it. Thank you every one for your thoughts and your kind words, they do mean a lot : )

Hello. Welcome to the group. I know it's hard at the beginning, which never really feels like the beginning, because of the ongoing issues. I know it's hard to be a student, and I myself am trying to figure that out. Can I finish? and What would I do with the degree at this point anyway? Many people on this site have also had a horrible time trying to get diagnosed, and trying to find doctors who have some level of understanding about Lupus. I am sure you will hear from them as well. Just know that we are here, we understand, and we are here for you.

You've got the right attitude, to let things go for now, and focus on YOU, and avoid stress. Take it easy and remind yourself: it is a disease of remission, which is great news. You will feel better, and you will have great support here when you don't. Listen to your body and rest when you need to, get the sleep you need, put yourself first for now. I would add: avoid the sun and heat. Pamper yourself. When you feel good still take it easy! It may or may not be Lupus but whatever it is you will benefit from rest and relaxation. Good luck and don't worry, chances are you will get it under control and carry on beautifully.

Hi and Welcome, I know it can be hard with the relationship issues to focus on yourself but tht really is what is most important right now. You will be much better for your son if you are taking care of the things you need. I think your partner also needs to realize that you need support right now because stress can keep Lupus raging. This can be so much to take in when you first learn of it and it is important to have others who understand. So group is really great for that. I have Degenerative Joint Disease in my spine also and it can be painful and hopefully you will be able to take care of this without surgery. It can be painful with long recovery times. I have had Epidural Steroid Injections which are effective but not for the long term. We are here if you need to vent. Also PM any of us if you need to talk.

April

So I had dr apt this morning and it did not go well at all. first my mom went so bad vibs the whole time, then dr is all acting like there is nothing wrong. said the tests shhow i have lupus but its not doing anything. he ran all this blood work to tell me this. i tell him i cant take pain anymore from my disks in back being smashed, said cant do x ray cuz damage to organs and maybe next time well take about it more but like he said before he is not worried about the back pain or non stop pain i live in. its so bad im crying almost all day and cry myself to sleep at night. idk what to do. he tried to give me a muscle relaxer the fda aproved for minors, said it would take about three days to start relaxing me body, then he also said another script for the lupus. im so lost its like he said i have it and was all worried now this apt it was like ok her a prescription now go away. i got no answers and right now i dont even get what it means to have something but its not doing anything. u really have no clue what to think or what to do. i kept telling the dr i hurt and so on and he just kept saying its not a big issues right now well get to it, how is it not big issue that i cant live me life and everything ive told him about the pain and how i feel means nothing to him. im so lost. i was told he would check my tissues organs and so forth. he said its not doing harm and not effecting my tissue, well why do i feel like im drounding and have been every night when i lay down at bed. why is my hips and shoulders cracking so loud when i get up in morning its the family alarm clock. why do my feet turn blue in shower, why can even my family see that i am loosing muscle mass in my legs and they see its harder to walk and i set down more and longer but yet this is all ok for now? I honestly feel right now that i want to just go mia i feel once again this is all in my head. i feel that i was told i have something and he was really worried and now a week later he acts like its no big deal at all. ive told my boyfriend that im really to the point where i think i need mental help cuz all i here is ya you got this, BUT here is a few pills and b on your way now!