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.
You are not alone!
Just the Sjogren's is enough to make you feel like life stinks. No wonder you are so upset with the list of major issues you have had to deal with in the past few years. I took an anti-depressant for about 8 months when I was first diagnosed to deal with the Why Me? feelings along with the pain and loss of lifestyle. I struggled with multiple symptoms, but (very) slowly worked out solutions, one at a time, but researching on the internet and then asking my Primary Care doctor to order a test or send me to a specialist. Then six years ago I found a wonderful rheumy at a teaching hospital who does Sjogren's research. It was like hitting the jackpot. He doesn't ever say "Well, I don't know what to do next" and is always willing to try something else until we find a plan that works.
Changing doctors sounds like a great first step. There are so many things for pain now, and getting your SLE and SS under better control would help improve your pain as well. If Cymbalta didn't help the pain and depression, maybe something else will. Don't take neglect on your doctor's part laying down.
I wanted to comment on the nerve pain issue. I took Neurontin for two years and complained the whole time of brain fog and feeling loopy. Then I tried Trilyptal which was somewhat better, but not great. Then my new rheumy switched me to Gabitril. It didn't make me so spacey, and has restored feeling to my feet so I can once again tell the difference between carpeting and tile floors. If I'd given up at the first drug, I'd be numb to my hips by now.
It sounds like no one suggested that there are other treatments for SLE and SS, like Humira. My pastor's wife has SLE and RA, and she is taking Methotrexate, Plaquenil and gets Humira too. I just read a blurb about a new Lupus drug under study in Great Britain that shows real promise in turning off the autoimmune attack. Another drug, Benlysta, was in Phase 3 FDA testing last summer, may be available by the end of this year as a new Lupus treatment.
Have you checked with the Lupus Foundation or the Sjogren's Foundation for a referral to someone in your area who does have a clue? Even a local medical society might be able to give you some ideas. You definitely need some help and sooner than later.
Please stay plugged in here. We want you to get some help too.
The hospital I work for has a policy that states that they must make all reasonable attempt to assist an employee with a disability request. The policy also states that the needs of the patients take priority and if the request does not benefit the hospital and patients, they can request the nurse to step down from their position. Isn't it ironic that I work in a hospital that is concerned with restoring patients to optimal health yet they don't care about their employees optimal health. I am not asking for them to support me while I stay home. I am still capable of doing my job (even though it hurst like crazy most of the time). I am just asking for accommodations in my schedule so that I can heal and be the best employee I can.
As for my rheumy, he is great. He listens to my concerns and respects my thoughts. He is the head of Lupus research at a university hospital so he knows a lot. About 6 months ago, I went to a different rheumy because I wanted someone closer to my home. The new rheumy said that I do not have SLE or SS. He said that my blood tests are only slightly positive, the butterfly rash is probably only rosacea, the edema is because I am overweight and the joint pain is a figment of my imagination because I had a diagnosis. I left his office in hysterics. He said all this, yet he told me to stay on the Plaquenil. I went back to my original rheumy and told him what this doc had said and he laughed. He reassured me that I most certainly do have SLE and SS.
I saw my rheumy in May. I was in his office crying about how lousy I feel and that I am sick of living like this. That is when he put me on cymbalta. I stayed on it for a month, did not like it and went off. I called and spoke with his nurse yesterday and told her I am feeling worse and she told me to give the cymbalta a little longer to work. I went back on it. He scheduled me for an echo, kidney and liver ultrasounds and some more bloodwork. I have a follow up appointment with him in August to discuss the results, but he said that I can come in sooner if I am not feeling better.At my last visit, my rheumy said that my parotid glands and lymph nodes in my face and neck are very inflammed. He also said that my eyes and mouth are so dry and that I need to start using something to help with that.I have tried ristasis, but it burned so bad that I had to stop. Now I just use gel artificial tears and chew gum all the time.
So, I read that the RA associated with SLE does not cause joint damage, but that the RA associated with SS does cause joint damage. Is that true? Do any of you have problems with your joints locking? I don't notice any changes in my joints other than swelling and pain. The worst joints are elbows, wrists, fingers, knees, ankles and feet/toes. Sometimes my hips bother me, but I associate that with walking the way I do because of the pain.
Thank you all for responding to me. It is hard not to feel so alone when the people around you have no clue what is going on in my body and the intensity of the pain.
I am glad you have a person who you can have an emotional connection with. Its a friendship so I do not understand why the family would worry unless they think its romantic.
The first step for you would be to get Dr. note to ask for your schedule to be changed based on the ADA. If the hospital doesn't comply you can fight or leave to another job. It is also imperative you get some emotional help from a professional counselor who can also prescribe meds as needed and if you need to be on an antidepressant and it helps you then do it. You are worth it. You deserve to be happy no matter what. You need the emotional support for your health, physically and emotionally and for your children. Definitely you need good sleep too. Melatonin works as long as it doesn't interact with your other meds. I wouldn't recommend any of the sleep meds as myself and many people I know had episodes of sleep eating, driving, activities involving others which we had no knowledge we did at all. Thank goodness no one was seriously injured but I have to say my family was walking on eggshells around me because i was so mean and didn't even know it.
These diseases are challenging and each day is a struggle sometimes. We have to make the best of what we have and all of us have days we feel down so however we need to get our heads back into life either through support groups, medications, friends, family, work, hobbies, etc. we do.
I wish you the best as you work towards better health.
I have been there!
The best thing I ever did was calling suicide hotline. i told the person who answered the phone that I was going to kill myself if the pain didn't end. She took me seriously and there an ambulance at my door right after I hug up. I was admitted on a pysch admit to our local hospital but as soon as they called my rheumy, he told then: she's not crazy, she's IN PAIN! They put me on a morphine drip.
But the reason this was this was the best thing I ever did was because for the first time ALL my many doctors consulted with one another! I got put on a new biological and on prednisone till it kicked it.
I tell you all this to tell you that today i feel FINE! There IS light at the end of the tunnel.
Why did you go off MTX? were you feeling better on it?
Best of luck...
If the alternative is to quit your job, then you have nothing to lose by insisting they accommodate you. You have more leverage at your current job than at a new one--if you are a new employee and have no seniority, it's not likely you'll get your first choice of desirable schedules.
If I were you, I'd make a formal written request with the hospital's Human Resources Dept and the EEO Office if the hospital has one. This provides documentation. If this doesn't work, you can ask the Dept of Fair Employment and Housing (state agency) for help. There's also the EEO Commission (federal agency). If you take these steps, I'd bet your nurse supervisor will take you seriously (or else she and the hospital will be in violation of ADA and open themselves to a discrimination law suit!).
I have been looking for another job, but in this economy, even for a nurse, it is not easy. I am on vacation this week and will see what the extra sleep does for my body. If it helps, I know what I have to do.
I have asked about Lyrica, but was told that one of the side effects is edema, which I already have. So, my rheumy does not want me on it. I have tried Medrol dose packs once a month which seemed to help a bit with the pain but made me into a viscious beast. The methotrexate did not seem to domuch of anything at the time, but since going off, I am realizing that I feel worse, so at my next appointment (at the end of August) I am going to ask to go back on. The cymbalta has done nothing for me. I have tried ambien to help me sleep, but I wake up feeling like I am in a fog and it lasts all day. Recently, I started drinking one glass of red wine before bed which seems to calm me enough to let me fall asleep, but does not help with the pain at all.
There are days where I feel like I can deal with the pain and go about my business as best I can, but there are days where I have just had enough of the pain and I get so down. I feel like a burden to everyone around me. The problem is that there has not been one day in the last year that I have been pain free.
I told my good friend that I just want one day. One day totally pain free to run with my kids and do all the things I want to do without first thinking about how it will affect me later. Is that too much to ask?
I can deal with the constant ache in my joints, but when it feels like someone parked a semi on my joints, I have a hard time just going to the bathroom. That is depresing enough to know that your family has to help you with your ADL's.
Sometimes I wonder if it is just my brain playing tricks on my body and I do feel the pain because I have a diagnosis, but I have a very high pain threshold and realize that what I feel is very real. The people around me look at me like I am faking for attention. Believe me, if I wanted attention, this is not the way I would go about getting it! If I wanted to get out of working, I would have accepted the disability.
I feel like if I accept the disability or the narcotics, the disease has won and even though there are times I feel like I can't go on like this, I know I have to fight for my kids. They need their mother (even if all I can do is sit and watch them play, at least I am still here with them to tell them how much I love them).
So, I have another question for you all. Do any of you have another autoimmune disease on top of the SS? I also have Lupus and sometimes it is hard to tell when then SS is active and when it is the Lupus. The only way I have been able to tell so far is that when the SS is active, my eyes and mouth are extrememly dry and the hidrinitis is very active. Other than that, both SLE and SS have a lot of the same symptoms.
I also read somewhere that SLE does not attack the nervous system as often as SS does. Is that true?
Keep looking for a new job. That is the best thing that you can do. I only have Sjogren's at this point. I am exhausted all the time but I do have other issues like my gastrointestinal issues. Is this part of the Sjogren's? I'm just not sure anymore.
I'm glad to see that you are going to be there for your kids. The kids would blame themselves if you did something. Remember being there is more important. Don't worry about being active with them right now. Just be there. They will always appreciate it.
Take care and good luck with your job search.
i can not work. i used tobe a spec ed teacher with a MS Ed.
no more. i am lonely, you want to kn ow what lonely is? try my life. no one to help me, cant sleep which means i have to do my walmart shopping at 2 am in the morning when there is no one in the store so i can get in and out mighty fast.
i would love to try plaquinel but i cant find any docs who are willing to give it to me to help me. they would rahter see me on drugs. well i want off drugs.i have no family. they all died off. only my son who is 25 and in the army overseas.
so the SS has attacked my pancreas.
half of it has been chewed up on the ct scan.
some days i feel like no one would miss me if i did myself in but i think it would hurt my kid. i am trying to stick around to see him get married at least, he is getting engaged in august, and married a year after that. maybe i will check out then b/c this is getting old.
this is no kinda life to have, it is especially hard on those who have young kids b/c you have to be alive for them. dont do yuorself in for their sake it is not a good legacy to leave behind.
hang in there, i got that same thing you do and i hurt all over like you also but now i cant even have a piece of cake...gluten free that is...good luck
if the doctors do not refill me by tomorrow i will be in withdrawals which are not very nice.
once this begins, i will NEVER take another pain pillagain b/c i am not going through WD's again. it is a misery. i am hunkering down for this. in case the docs tell me no you are too eary for a refill. it is not very pleasant but perhaps whati need to do anyways.
after this, i am done taking these kinds of drugs. they dont help me anyway. will probablytry low dose of of anti-depresssantinstead to see fi this helps me. i have tried the whole gamment of lyrica, which made me gain 50 pounds, topomax, depakote, and everything in bewteen Except for what i think would help me the most which is thte plaquienl. but these stupid doctors dont know how to treat me...oh well try to have a nice day, i know i am in for a roller coaster ride by tomorrow so that means i have to get stuff done today b/c by tomorrow i will be puking and have the runs and will not be able to get out of bed. don t go the same route i went taking meds like narcotics, it is bad.
First, let me tell you that neither of you are alone. I felt I was for the longest time, but joining this forum has made me realize that I am not in this alone and that many people have the same chronic pain I do. I am truly sorry for everyone that has to go through this horrible disease!
My rheumy has offered me narcotics in the past but I have refused them for several reasons. First of all, I have three young children that I have to be able to get up with in the middle of the night if needed and I can't do that on drugs. Second of all, I am a nurse and have very easy access to these meds. I don't want to become a statistic or lose my lisence because of a narcotic addiction. Lastly, I feel that by accepting narcotics to control my pain, the disease has won. It may get me down and temporarily take over, but I won't let it win yet.
I have a grave sense of hopelessness frequenly. It is especially bad when I wake up in the morning and have to use the bathroom but my body won't cooperate with me. Believe when I tell you that I have wet the bed more times than I care to admit (and I am only 39). Not only do I have the emarassement of wetting the bed, now I have extra laundry to do and the laundryroom is all the way down stairs.
ihaveitbad-it sounds like you need a new doc. ONe that will take you seriously and get you on the right track or at the minimum, listen to your concerns and wean you off the narcotics if that is what you want.
beejusbee-I am sorry that you were let go from your job. I have a feeling that what happened to you will soon be happening to me. I feel I have been targeted because of my disease and the FMLA.
From what I have read from everyone on this support site, it would seem that there is no way out. SOme have had the fortune of finding a treatment that works, but most struggle with pain on a daily basis. This struggle has altered the way we do things and changed much about the way we have to live. At times, this revelation makes me feel like I can struggle through for my kids' sake. At other times, this revelation makes me realize that there really is no hope that I will ever feel normal again. The question now, is do I give up or keep fighting? How strong is my love for my kids? Is it strong enough to keep me fighting one day at a time?
Never give up hope. The message of this forum is that there are a lot of people out there with the same problems. Don't think you need to give up on your kids. There is hope out there. They are doing medical miracles every day. Why not autoimmune diseases?
Here is a website for Suicide.org and their message.
"Suicide is NEVER the answer, getting help is the answer.
If you are suicidal, have attempted suicide,
or are a suicide survivor, you will find help, hope, comfort, understanding, support, love, and extensive resources here.
I Love You.
And I will never stop fighting for you,
Kevin Caruso
Suicide.org
Founder, Executive Director, Editor-in-Chief
Senior Writer, Forum Administrator"
Check out the website and see if it can help. Your kids are important, no matter what age they are.
Keep your faith and believe something good can happen to all of us.
I think that I can relate with you a little bit. I haven't been diagnosed officially but I have heard the words Lupus, Sjogrens and Fibro thrown around the past two years and it has been an extremely emotionally taxing thing to go through. I have never been through anything this hard. Your not alone or crazy for feeling that way at all. I also have a youngster with tons of energy. I can relate to the feelings of guilt from not being as active a mom as you could be minus our illness. It is hard. But I still think those children need you sick or not sick. It doesn't matter that you can't do certain things, they love you unconditionally. That is the one kind of love that our illness can't touch! Our illness cannot hurt the bond we have with our children. Just don't give up on that. Its not so much how active we are with them but its the emotional support and love we give them that matters. They always need a mom to go to, there are no true replacements for this. That being said even though I am not active with them like I would be healthy, I still try and do other less active things that are fun and we are all adjusting. My daughter is only three and doesn't see a sick mom but I know as she gets older there will be difficulties but in no way will your kids be better off without you, just remember that. Hugs!
I realize that suicide is not the right way out of this, but sometimes it feels like the only way. I made a promise to a very dear friend that I will not make any plans without talking to him first and the couple times I called him feeling completely hopeless, he pointed out that my children need me (illness or not). I keep fighting for them. I don't want them to think that it is ok to give up (and that is what I am doing if I end my life). I want them to see that their mom went to work and maintained a nice home even though she felt like crap most of the time.
It tears my heart out when I am having a particularly bad day and my kids have to see me struggle just to do the basics. My daughter has sat at my feet and cried when I cry. I hate to see them go through this. My little one gets upset and won't let go of me and my oldest son goes and hides in his room. It really tears me up that the loves of my life have to go through this with me. I have tried to hide it for so long, but there is no hiding what is in full force now.
I promise to keep fighting for them knowing that I will have days I feel like there is only one way out. On those days, I will think of my kids, contact my friend and post here.
Hugs to all of you for being so wonderful despite a horrible illness!!