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.
Lastly, it is very, very difficult for people to support illnesses they do not understand and men seem to drift away when things like this happen. Perhaps you can find some sort of therapy for both you and him to attend together. I know it has helped some people in situations such as yours. Don't ever think of ending it. Try some other things. No pain relief is NOT the way to go. I know I tried also but my mental state is better when I feel a little better. I fought taking the Plaquenil but finally gave in to that also as I could no longer take the daily never ending pain. Have been on it a week now. Just don't give up I just know there is something out there that will help you. And, mostly don't try and do what you can't do otherwise there will be depression. It might have to be that you do go on disability and maybe your husband might have to get a second/part time job, but you are in this together and that is where therapy may help. I wish you luck and keep me, us posted.
I also have a full-time job, along with selling Avon on the side. My husband has been laid off for almost 10 months and we can barely keep our house going. Besides being laid off, my husband has had trouble with gambling in the past. He has now been through treatment but it really doesn't help that he caused most of the bills and I'm the one having to work.
I have two children that I know need me. If nothing else, to make them laugh. When I feel like I'm going nuts, and feel like I'm falling into my depression mode, I start acting goofy and make them laugh. I sometimes feel like I am reverting back to a kid when I do this and they seem to enjoy it. They are constantly telling me to "grow up."
If it wasn't for my Avon, I might have gone crazy. There are days that I just want to "crawl into bed and not get out." But then my clients call and they need something. There are clients that have it worse than me. Their only excitement is when the Avon lady comes knocking. I know I have to get through this because of my kids, my clients and my husband.
Besides going through all of these issues, my Mom recently put my Dad in the hospital to try to control his Alzheimers. After being married 52 years, they decided that she can't handle him and they are putting my Dad in a nursing home.
They say that stress exacerbates a lot of these issues but I just don't know how to get away from the stress in my life.
Trust me, you are not alone. Keep pushing the doctors to try to find a helpful solution. What frustrates me the most is that I go to work and I look fine. People don't understand the pain that I go through everyday.
Keep positive and don't give up. Your children need you. The comment about counseling is a good idea too. My husband usually went gambling when he found out I was sick but now is standing by me through all my doctor appointments. Believe it or not, men can change.
Believe in yourself and you will figure out a plan to make it work.
Thank you so much for responding. I have tried ultram in the past with little effect on the pain. I have been taking Plaquenil 400mg per day since my diagnosis in 2004. When I was put on meth, the rheumy dropped the dose of plaquenil to 200mg daily. I am on Lisinopril 40mg daily for hypertension due to peripheral blood vessel damage.
Suzieq64-you mentioned that your husband has picked up gambling as a way to cope with your illness. My husband has become a raging alcoholic. When I am feeling really bad, the drinking gets worse and so do the words of how worthless I am. When all I want to do is curl up into a ball and sleep, I am told that I am lazy.
I should mention here that I am a nurse in a very busy pediatric ER and work 3pm - 3am three days a week. The physical demands and stress of the job are adding to the pain. I worked hard to become a nurse and don't want to give it up, but it looks like I may have no choice. This only compounds my stress which causes the Sjogren's and Lupus to gain control of my body.
As for the suicide plan, I know that my children need me, but sometimes I feel like they would be better off without me. It really upsets them to see me like this on a daily basis and I feel like I am taking more away from them by fighting than by giving up. I hate what these diseases have done to me, but I hate even more what it has done to them. They have lost out on a lot and have been forced to grow up too fast.
I had some Vicodin from a car accident I was recently in and that seemed to help me sleep easier, but I wake up with the same pain and stiffness. Getting out of bed is a nightmare and fighting to get through the day, clean the house (my husband does not permit the house to look like children live there and I know I should stand up for myself, but it is easier to suffer through cleaning than hear how worthless I am over and over) go to work and care for my kids.
One thing that is very important to understand is that it is NECESSARY to go through the stages of grief when you are encountered with the loss of your health just as it is with the death of a loved one. A loss is a loss. I am sure that the majority of people who deal with chronic pain, I will admit it openly, have thought of suicide.
I think therapy is a wonderful idea. If there is chronic pain center close to you, ask your doctor for a referral.
Unfortunately the pain is there. I can't say it will get better. For some it does, but there are ways of dealing with it. You are not alone, because we all hurt here. But if you are seriously considering taking your own life...if you have decided how you would do it and things like that, you need someone more trained that we are here. Get the HELP you need now. Don't be embarassed. We all can benefit from it. WE don't want to lose you.
Emotional stress does compound the symptoms. I was an ER nurse as well. I worked until I almost dropped a patient and my coworkers were picking up most of the physical demands of my job. Take care of yourself. You NEED help with the physical demands of your day. Your body will decide when it has gone as far as it will go and you will take twice as long to recover.
I'm not talking about symptoms or disease processes, as a nurse you know about most of all of that.
Talk to the HR office. My hospital carried a long term disability policy on all of its employees (at no cost to employee). It was so great at tiding me over until disability kicked in. I didn't even know about it until I needed it.
You have counseled parents and patients in the course of your work and you know the numbers you need to keep close by. Use your experience and counsel yourself now.
Prayers headed your way.
We all go through days of despair and frustration with our illness but most of us love life and will fight to live our lives to the best of our ability. DO what you love. Don't sweat the small stuff. Don't sweat the stuff you have no control over. I pray you will find the resources and help you need and your situation will get better. Take care and check in. We are here to listen and support you. Hugs.
Now I understand why you feel the way you do. Trust me, you cannot let your husband treat you that way. It is the alcohol talking, not the man. You really need to talk to somebody.
You can call Al-Anon too and try to get some help that way. Otherwise, I would try to get some help with a counselor to talk about all the problems. Trust me, no matter what, you need to be there for your kids. Who would take care of them if you decided to go through it? That is not a solution. Please don't even think that way. Even though my kids have had to grow up fast too, they have learned a lot over the years with the gambling issue and now with my disease. Yes, it makes them grow up but that isn't necessarily a bad thing.
Remember, you are not alone at all. It is tough and you are not lazy!!!
As for looking in a mirror and telling myself that I love myself and others love me, I can't do it. I can barely look at myself anymore without being totally disgusted at what I see and the transformation my body has taken on. I am disgusted at what I see and know why people stay away from me. The woman I used to be, so strong and independant, is no more. I have become a warped person that can barely get herself out of bed in the morning.
Anyways, I keep a brave face in front of my kids and my parents and I have tried to laugh through the pain at work so that people can not see how much pain I am really in. I cry all the way home from work because I hurt so bad. I cry in the wee hours of the morning when I am alone because when I cry it scares my kids and makes my husband very upset. I know my husband loves me, but if he can't handle my disease now, how will he handle it if something happens that is even worse (like having to go on disability or relying on a wheel chair or organ failure)?
I would like to ask everyone that responded to me if your Sjogren's is primary, occuring alone, or secondary occurring as a result of another autoimmune condition.
Thanks for all the support! I am so glad I found this support group. I don't feel as alone as I did before I started this chat.
I don't live with the physical pain that you and so many others here do, however I am no stranger to the psychological, emotional and mental pain caused by abuse. I am certain part of your desire to end your suffering is exacerbated by the tapes that keep playing in your ears about how incompetent you are due to your health. What IS competent is what you have on the inside and THAT is what children need.
It might help you to contact an abuse shelter in your area and talk to them about help as well. There are also great books on the subject which helped me a lot on my healing journey. Dr. Patrica Evans books are excellent. There are also wonderful and supportive verbal abuse forums. I haven't been on them in years but Patrica Evans had one and Dr. Irene's Verbal Abuse website as well.
I also have a question about wether you have had an MRI of brain and spine. With your dropping things and falling I am wondering if it is MS. There is an MS forum on Daily Strength and many there advise good results with the drugs prescribed for MS.
Please don't give up. Meditate if you can. I know you know what that's about and you know it is beneficial for the body as well as the mind and spirit. The stress you're under will land you on your arse for sure if you don't find a way to take care of that first. I'm exhausted and stressed just listening to how demanding your life is. That combined with pain is unimaginable. You may not be able to manage that pain right now, but you CAN find a way to manage that stress.
Thank you for your response. I had an MRI about 2 years ago when the numbness and tingling started along with the inability to move my arms and legs at times. I also had some peripheral vision loss at the time that has continued. The MRI was only of my brain, but was negative for any MS lesions. They have since completely ruled out MS. I saw a neurologist a few months ago who ordered an EEG and MRI of brain and cervical spine. The EEG was because I have these staring spells that last a few minutes and nothing seems to bring me out of them. I don't know they are happening, but they don't appear to be seizures. The MRI was not done because my insurance denied it. They want me to have physical therapy and xrays first. July 5th I will have and echocardiogram, liver and kidney ultrasounds and some more blood work.
Anyways, MS and seizures have been ruled out. I also had a CT that showed prominent lymph nodes in my axilla, abdomen and groin. Intersting to note here that I have so much peripheral edema and swelling in my belly that I look like I did when I was 8 months pregnant. They are watching the lymph nodes to make sure they are not lymphoma.
As for my plans to end my life, I can assure you that even though I think about it all the time, I keep hanging on for my kids. If it was not for them, I would have been gone already. They give me the strength I need to get through the day no matter how lousy I feel.
I have been trying to get on day shift for some time now. I went to my nurse manager a little over a year ago when my rheumy said that the lack of sleep was contributing to my lack of remission and he did not want me working more than 8 hours and not after midnight. I was told that the hospital did not allow for this and that I would be asked to leave if I pursued it. Twice in the last months I bid on day shift hours and twice the positions were given to those with less seniority than me. I have a feeling that due to my illness, the hospital sees me as a liability and is trying to get rid of me. I told my nurse manager that if I did not get on day shift soon I would have to find another job. I have started sending resume's out.
Please, please do what you need to for you and your children.
Whiteja is correct. You have to take care of yourself. Ask your doctor for disability and if your husband isn't willing to change, then you need to find a different solution. Change is necessary in your situation. Get a doctor to take care of the disability and then maybe you can deal with your husband.
Have you heard of the AMERICAN DISABILITIES ACT (ADA)? It is a federal law that says companies have to make reasonable accommodations for employees with disabilities. Your request for a schedule change is totally reasonable, especially since alternate schedules were available but were give to others without such medical need! If I were you, I'd press for it--it's your right!