My Friend Has Sjogren's And Is Suffering-is Quickly Losing The Will To Live.

I am here due to the fact that my dear friend is suffering from SS. She is quickly losing the will to live. Dry eyes and dry mouth are the least of her problems. Her skin is like leather and suffers in pain everyday.
My hope here is to find support for her and understanding of what is happening to her. The doctors do not seem to know very much and they do little to help someone understand how to live with this disease. I do not know how to help her and am looking for suggestions. I am here because my friend has giving up, all she wants to do is die. She is not suicidel, she is scared of becoming crippled and not being able to help herself. I have been searching for support groups for her to join. Have I found the right place? I am not even sure I will be able to get her to join. I will not give up trying to find her help. It often brings tears to my eyes, she has isolated herself from everyone.
I am open to any and all suggestions. Thank you in advance for your consideration. Richard
mind2warp mind2warp
66-70
9 Responses Jul 28, 2010

For these desease, I suffer severe depresion and stop socializing to anyone. I am in great pain, my fingers are not able to vent,my joint is pain and lots of resless night due to my pain. I soaked my body in hot water to be able to ease the pain. I can related with your friend but she is so lucky to have a friend like you. I really dont have any suppport as matter of fact, my children think that is just in my head. There is a day that i feel that my life not worthy anymore

She should at least try prozac or something. It is also good for.helping with pain. I understand as alot of this lupus SS stuff is neuro related ie depression therefore antidepressants!!!ing

This is "susan" again. Having a bad day. Found this blog because I was looking up " sjogrens & suicide" as you can tell I am havin trouble keeping the "page" open. Thats why I have to keep entering thoughts. I had a good laugh this morning reading about the guy who fell in a hole on the golf course!!!.so hilarious!!! If you didn"t hear about it-- it was in illinois the hole was like 20 feet deep!! He is very funny describing the whole thing-- read it to lighten your spirit. Its sat

I was sayin I was finally diagnosed with a mild ljpus that no kidney In volvment

Sorry im so dumb aboutbcomputer stuff.oh well. I do the best I can .I was sayin iwas diagnosed with mild lupus in 2007. Did not realize about sjogrens which I must have had also. I got disability I think because of psych isssues

I suffer with this desese for 4 years now at first it took them along time to find out what was wrong with me i have the swollen joints dry eyes and mouth gland problems, hard to walk lost mostly all my teeth. I also suffer with depressin. I have a small family and no true friends that i can count on. I am very lonly and in relly deprate need for a support group. If any one can point me in that direction i would so appricate it. Thank you. Liz

i know the feeling very well. the more she educates herself and the more she gets understanding from you the less she will feel alone. please go buy "the sjogrens survival handbook" i was lucky to find it to my surprise at my local library and it gave many good tips and focused on "LIVING" with the condition and all its ups and downs. it goes into depth of the emotional impact it has on us and will enlighten you plus give good tips on where to seek help and how to live with changing financial situations and relationship changes

hello mind2wrap i can relate to how your friend is feeling, i to have sjogrens syndrome i was diagnosis with it in 2006. and yes it has changed my life alot, many times i awake asking myself why me not understanding how i can go down so bad. at times i have really bad days my head,body hurt so bad. that i feel so weak then depression hits me i can sit in my house and cry all day and i feel so alone, alone that no-one ealse might not understand the hurt we all go thru. my illness almost broke my marriage. you see one day i felt like i had to get away like i had to run just run the funny thing is i dont know what i was running from i left my home for 3 days my husband of 30yrs and my 5 children (all adults) were all so worried i have never done that before.Its been a year now and yes things are getting better its not easy every day i fight for another day, but mind2wrap its worth it, please tell your friend that she is not alone and that things will get better. may God bless u and your friend.

I strongly suggest finding a local Kangen Water distributor. It has had amazing effects on my symptoms, and I nearly feel human again. It took a long time to find anything that helped with the symptoms, but for me a heating pad for my swollen glands & organs was the only release from the pain. Another small relief was Arnica gel for my joints, and going to the local pool 2 times a week. Gentle massage therapy of inflamed areas helps drain swollen glands, always rub toward the heart. It is hard to deal with losing your well being, almost cost me my marriage, just don't give up on your friend, help her realize she is going through a flare up, and she need to break the cycle.<br />
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I broke my flare up by first fasting for 2 days, it takes a lot of energy for the body to digest food, easier for your body to focus on disease and other things when not having to put out so much for digestion. Slowly introduce food back into our system, only adding one thing at a time. I started with rice, then added broccoli, etc go slow with the food intro, as a food allergy will trigger the symptoms again. Do not add Dairy back into your diet, it is hard, but all humans are genetically allergic. Wheat is another you should avoid it at all possible. There are potato breads and rice breads that don't taste horrible. As you start feeling more normal, add excersize. Swimming is the gentlest way to start, but walking is good too. It takes time, took me 9+ months, but I feel so much better now. Now I just to stay infection free. I believe the Kangen water will keep me symptom free so song as I don't get an infection, we shall see.<br />
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Good luck, don't give up hope, it won't last forever

i am in pain i have had 2 ischemic colitus attacks and my hand looks like it is bruised up i red dots all over my legs which could be vasculitus i did not know all this could happen to me i thought it was a mild diseaseanybody else have the issues

So sorry to hear about your friend, Richard! <br />
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As a seven year survivor of Sjogren's syndrome, i do know much of what your friend and enna30 are experiencing. It's crummy, but actually there IS life after your diagnosis. I write a blog about Sjogren's syndrome which you may find useful. It's called Reasonably Well: Living well with Sjogren's Syndrome. and the address is: http://reasonablywell-julia.blogspot.com. As a RN, I try to bring some perspective and simplification to all that confusing medical literature that can be found on the web. I also share my personal and sometimes rather goofy take on life. <br />
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Finding information and finding other Sjoggies out there is vital to survival with this disease. Another great resource for forums can be found at Sjogren's World forums. An excellent forum, with knowledgeable mods, and lots of participation world wide. <br />
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Best of luck. Encourage your friend to find more information and support!

I am so sorry to read about your friend. Unfortunately I cannot help - I too am seeking information about Sjogren's. I do know there are Sjogren's support groups outside of EP - just type it into Google and see what comes up. Good luck.