Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Oh boy, I don't even know where to start!
Hi. My name is Kim. I am a 39 year old mother of 3. I was diangosed with SLE in 2004 and Sjogren's in 2008. I had various symptoms starting after the birth of my second child that included peripheral edema, extreme fatigue, and joint pain. I saw every specialist known in search of a diagnosis. I finally met a rheumy that diagnosed the SLE but after treating me for a couple years, she no longer knew what to do with me and would tell me I am a medical mystery. I found a new rheumy that was able to diagnose the Sjogren's on top of the SLE. On top of the edema, extreme fatigue and joint pain, I now also suffer from neurological problems including weakness and numbness in my arms and legs as well as dry eyes that have caused problems with vision and a dry mouth. I also have a condition called hidrinitis which is quite gross.
I take Lisinopril, Plaquenil, Vitamin D, Folic Acid, and Synthroid. I just got off methotrexate and methylprednisone along with Cymbalta to help with the nerve problems because they did not seem to help me.
In 2005 I had a miscarriage and was told that I would never be able to carry another baby due to the Lupus. In November 2005 I found out I was pregnant but started bleeding on December 22nd. I went to the ER and was told that the baby was fine but that I would probably not carry him to term. I also found out I was pregnant with twins and I had lost one of them. In July 2006, I gave birth to a healthy baby boy but my body and the diseases have taken over since that time and I just can't seem to get it under control.
I feel lousy almost all the time. My legs feel like they have a semi parked on top of them, my joints feel like they are going to explode, my hands ache and my elbows lock. I also have a problem with my brain forgetting to tell my legs to move or to hold me up as well as my hands to hold things, so I fall often and drop things as well.
I work full time night shift because I can't afford to go on disability. My husband is scared to death of what is happening to me and can't handle it, so he has not been a source of support. My children are too young to understand and get scared when I fall or can't move at all. They see me in pain all the time. Some of the people around me think I use my diagnosis for attention and others don't really care and only ask how I am feeling because it is the polite thing to do. I feel so alone most of the time.
This past October, I had a plan to end it all. I could not deal with the pain any more. I was getting ready to carry out my plan when I got a phone call from someone that was concerned about something I had written on facebook. I made a promise to my new friend not to end my life without talking to him first, but I must admit that I think about it all the time. I have refused all narcotics because of my career and the fact that I have three young children to raise. I don't know where to go from here. The treatments are not working and I feel like I am doomed to feel this agony for the rest of my life. I don't know how much longer I can stay safe and keep my promise to my friend.
I am sorry that this has been a very long introduction and that it is so depressing. Please, can someone help me. Am I truly alone or does anyone else have the same chronic pain? If so, how do you get through it? Please, I am despirate.
Thank you for any help you can give.
Hi. My name is Kim. I am a 39 year old mother of 3. I was diangosed with SLE in 2004 and Sjogren's in 2008. I had various symptoms starting after the birth of my second child that included peripheral edema, extreme fatigue, and joint pain. I saw every specialist known in search of a diagnosis. I finally met a rheumy that diagnosed the SLE but after treating me for a couple years, she no longer knew what to do with me and would tell me I am a medical mystery. I found a new rheumy that was able to diagnose the Sjogren's on top of the SLE. On top of the edema, extreme fatigue and joint pain, I now also suffer from neurological problems including weakness and numbness in my arms and legs as well as dry eyes that have caused problems with vision and a dry mouth. I also have a condition called hidrinitis which is quite gross.
I take Lisinopril, Plaquenil, Vitamin D, Folic Acid, and Synthroid. I just got off methotrexate and methylprednisone along with Cymbalta to help with the nerve problems because they did not seem to help me.
In 2005 I had a miscarriage and was told that I would never be able to carry another baby due to the Lupus. In November 2005 I found out I was pregnant but started bleeding on December 22nd. I went to the ER and was told that the baby was fine but that I would probably not carry him to term. I also found out I was pregnant with twins and I had lost one of them. In July 2006, I gave birth to a healthy baby boy but my body and the diseases have taken over since that time and I just can't seem to get it under control.
I feel lousy almost all the time. My legs feel like they have a semi parked on top of them, my joints feel like they are going to explode, my hands ache and my elbows lock. I also have a problem with my brain forgetting to tell my legs to move or to hold me up as well as my hands to hold things, so I fall often and drop things as well.
I work full time night shift because I can't afford to go on disability. My husband is scared to death of what is happening to me and can't handle it, so he has not been a source of support. My children are too young to understand and get scared when I fall or can't move at all. They see me in pain all the time. Some of the people around me think I use my diagnosis for attention and others don't really care and only ask how I am feeling because it is the polite thing to do. I feel so alone most of the time.
This past October, I had a plan to end it all. I could not deal with the pain any more. I was getting ready to carry out my plan when I got a phone call from someone that was concerned about something I had written on facebook. I made a promise to my new friend not to end my life without talking to him first, but I must admit that I think about it all the time. I have refused all narcotics because of my career and the fact that I have three young children to raise. I don't know where to go from here. The treatments are not working and I feel like I am doomed to feel this agony for the rest of my life. I don't know how much longer I can stay safe and keep my promise to my friend.
I am sorry that this has been a very long introduction and that it is so depressing. Please, can someone help me. Am I truly alone or does anyone else have the same chronic pain? If so, how do you get through it? Please, I am despirate.
Thank you for any help you can give.
Sometimes life surprises you. I am very grateful!
I can only imagine how hard it must be to have young children & work with this illness. I take my hat off to you!.
I have begun looking for a new job and even have a few interviews this week. The jobs I have applied for are day hours so I can sleep at night and are not as physically demanding as the position I am currently in. Currently, I work in a pediatric emergency room in a trauma center. I bid on a position in one of our independant peds ER's that is smaller and does not take traumas. One of the jobs I applied for is an instructor position and would be much easier on my joints. THe other job is with the same hospital I work for now but I would be a pediatric dialysis nurse.
I am a bit nervous about going to these interviews because I am afraid of what they will say when they see the way I walk. If they know that I have SLE and SS, will they turn me down because they will view me as a liability? Should I be honest with them about my diseases?
I had thought about taking meds to help me sleep but I am afraid that one of my kids will wake in the middle of the night and need me and I won't hear them because I am so snowed. I am especially worried about my 4 year old because he wakes frequently with nightmares. He is also a bit of a handful and has been found wandering the house in the middle of the night. I worry about not hearing him and him wandering outside.