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.
Hi all~
I have read many posts of the pain we feel because of SJS. Many of us have pain from the time we get up to the time we go to bed. Some of us have joint pain, some have muscle fatigue and pain, and many of us have various other types of pain. All of us have watched as this disease affects not only us, but everyone we come in contact with.
All of us have lost complete normalcy in our lives because of our disease. There was one aspect of my life I thought that this disease would never affect, but now it has and I don't know how to deal with it.
This topic is very personal and embarrassing to talk about, but I need to know if anyone else has this problem because I am having a really hard time with this one.
For the last year, I am unable to orgasm without having severe pain in my arms and legs at the very start of the orgasm. It has gotten to the point that I don't even want to be intimate with my husband because I am so afraid of the pain caused by orgasming. At first he thought I was cheating on him and that was the reason I did not want to have sex with him. Then I let him see what happens and confessed that having orgasms causes such great pain that I don't want to have any. He has tried a couple times to help me through it, but I end up in a fetal position crying my eyes out and begging to die!!!!
I have tried getting drunk to lessen the pain. I have tried taking narcotic pain meds about an hour before, but it does not help. I don't know what to do and I feel so horrible that this is affecting my husband the way it is. This diseases is not fair to us, but I feel like it is my disease and it is not fair that it is taking this pleasure away from my husband. I told him I give him permission to leave me and find a woman that can satisfy him in that way and that does not have a disease hplding him back.
I realize that this is very personal and if you don't want to post anything on here, please sent me a personal message. I already feel like a freak because of the way I walk due to the joint pain and damage and now I feel even more abnormal.
Thank you!!
I have read many posts of the pain we feel because of SJS. Many of us have pain from the time we get up to the time we go to bed. Some of us have joint pain, some have muscle fatigue and pain, and many of us have various other types of pain. All of us have watched as this disease affects not only us, but everyone we come in contact with.
All of us have lost complete normalcy in our lives because of our disease. There was one aspect of my life I thought that this disease would never affect, but now it has and I don't know how to deal with it.
This topic is very personal and embarrassing to talk about, but I need to know if anyone else has this problem because I am having a really hard time with this one.
For the last year, I am unable to orgasm without having severe pain in my arms and legs at the very start of the orgasm. It has gotten to the point that I don't even want to be intimate with my husband because I am so afraid of the pain caused by orgasming. At first he thought I was cheating on him and that was the reason I did not want to have sex with him. Then I let him see what happens and confessed that having orgasms causes such great pain that I don't want to have any. He has tried a couple times to help me through it, but I end up in a fetal position crying my eyes out and begging to die!!!!
I have tried getting drunk to lessen the pain. I have tried taking narcotic pain meds about an hour before, but it does not help. I don't know what to do and I feel so horrible that this is affecting my husband the way it is. This diseases is not fair to us, but I feel like it is my disease and it is not fair that it is taking this pleasure away from my husband. I told him I give him permission to leave me and find a woman that can satisfy him in that way and that does not have a disease hplding him back.
I realize that this is very personal and if you don't want to post anything on here, please sent me a personal message. I already feel like a freak because of the way I walk due to the joint pain and damage and now I feel even more abnormal.
Thank you!!
deleted_user
As what you are having ae muscle sopasms I suggest that you talk to your primary docotr and ask for a prescription for a muscle relaxer.FLEXERIL. Take an hour before bed. It will also stop any leg cramps anyone may have. I have been taking Flexeril for years now and it works great!!!!! This SHOULD let you have a normal sex life with your husband again.
lateedah
You might want to search out Vulvadynia. Any gyn can help.Please take care
deleted_user
First, all wpmen should print out information for their spouses.....including this page so they can underrstand you better. I am lucky as my husband cares about me very much and I comne first to him. Sex can still be good without the actual act.their are other ways to pleasure each other and a woman always loves to be held and cuddled. For him try masturbation or even oral sex. No way should you have to go thru pain in order to please HIM sexually!!! We do not live in the dark ages.your husband took the same vows as you did.in sickness and health. Anyone who doesn't want you if you can't have sex isn't worth trying to hang on to. and to sqay yo're having an afair.goodness me!!!
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