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Sjogren's Syndrome Sufferers Join this Group

Sjorgens and myasthenia gravis and copd

By April 19, 2012 - 1:43pm

I seem to have several autoimmune diseases all attacking my body in different ways. I was wondering if the lack of secretions would influence my COPD and the lack of being able to cough up some secretions and what I do get up is very thick and sticky. I use Restasis for my eyes and various products for my dry mouth, which is exacerbated by my BIPAP mask every night. I wake up with my gums stuck to my teeth and the sides of my mouth stuck also. I also have fibromyalgia, CFS, osteoporosis and osteoarthritis. I have positive tests for many viral infections, such as cytomegalovirus, EBV, and many more. (I worked as a nurse for close to 30 years and was exposed during years in the NICU) I also have Raynaud's . Are any of these inter-related? I am exhausted all the time and get short of breath very easily. My activity level is quite decreased and the consequences severe when I do overdo it. Thank you. bbnrse

By May 19, 2012 - 1:18pm

Was told to lay off for awhile, so I haven't written. I'm OK. Still plugging along caring for roommate, self, and apt. My feet hurt badly, too, but he said he didn't think it was a recurance of the osteomyelitis, praise God, but good old arthritis. No answers there, or no signs of relief anyway. I am hoping to get to do some exercises in the pool at the Senior Center. Right now I just don't have the time what with the pulmonary rehab twice a week and regular doctor appts. I wish better for you. No one has mentioned the possibility of it being Sjogrens. Best of everything to you. bbnrse

May 19, 2012 - 1:18pm
By May 6, 2012 - 4:42pm

Hi and hope you're having a good day this Sunday! I woke up to terrible pain in my lower back and my feet! Can barely walk as my feet hurt so badly! I don't know if my foot pain is from arthritis or could it be from Sjogren's! Can't wait to get back in the pool at the YMCA tomorrow as the water excercise rerally halp my pain!

May 6, 2012 - 4:42pm
By May 5, 2012 - 7:56am

Yes, it could be much worse. And it is always good to be the thankful because thankfulness brings peace to the heart and calmness to the spirit. It is just about the only thing that keeps me going. I pray, I thank God for His many blessings and don't focus on all the things that are wrong. I do get negative and depressed at times, but when I think how fortunate I really am it makes things seem better. I take one day at a time and not borrow trouble from tomorrow. I have enough to deal with one day at a time to worry about yesterday or tomorrow. Some days it is all I can do to get through the day at hand. I have considered finding a way out, but lately, not seriously. I do my best to help others and that keeps my mind off of me and my problems. Focusing on helping others is the best thing one can do to change one's attitude. bbnrse

May 5, 2012 - 7:56am
By April 20, 2012 - 2:16pm

First of all, God bless you, my friend! They say that God doesn't give us any more than we can bear but I wonder sometimes.... My eldest daughter died in 2003 and then, my husband passed away five years later! I was diagnosed with my autoimmune problems around that time. Like you, I hurt from my neck to my feet and I alternate between taking Aleva, Tylenol and Hydrocodone. I don't like to take the Vicodin because I know it's very addictive so I only take it if my pain gets very severe! I have lost two close friends to Cancer within six months so I thank God for being alive and all the other blessings He has bestoved on me! You and I are in pain and yet it could be much worse...

April 20, 2012 - 2:16pm
By April 20, 2012 - 12:02pm

I too have plugs in my tear ducts, but the Restasis does help me. I just wish I could afford to use it as directed. It is so expensive and not covered by my insurance. I do use A LOT of Artificial Tears for severe dry eyes every two hours during the day. I am unable to use the ointment recommended for use at night because I wear a full face mask fro my BIPAP machine I use every night to breathe, or keep breathing at night, as I have severe central sleep apnea. The ointment ruins the plastic in the mask. My fibromyalgia pain is also quite severe along with other pain syndrome factors and I take heavy doses of narcotics several times a day. It doesn't stop anything, but does make it almost mangeable and keeps me functioning on a very basic level. But there are things that have to be done, so I do a lot of grinning and bearing it. We all must face some "thorn in our sides" to get through this life, and I suppose I have mine, so I must try to make the best of it and do what I can do when I can and rest when I can't. Staying close to God helps me. We each have to find what comforts and strengthens us and go for it. I hope you have some good days and can find something to look forward to, or at least to cope better. Blessings. bbnrse

April 20, 2012 - 12:02pm
By April 19, 2012 - 2:41pm

Hi! I also suffer from Reynald's and Fibermyalgia and Ostearthritis. Reynal's and Fibermyalgia are both under the Autoimmune disease "umbrella"! My "dry Eye" syndrome is severe and not helped by Restasis at all! I do have plugs in my tear ducts and I wonder if those are affecting the resujlts provided by Restasis? I'm in constant pain from the Fibermyalgia from my neck to my feet!

April 19, 2012 - 2:41pm

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Sjogren's Syndrome is an inflammatory disease where our own immune system destroys cells in our EXOCRINE GLANDS. The damage occurs mostly in our SALIVARY and TEAR GLANDS and it is a lifelong condition. In some cases other parts of the body are also affected, such as our BLOOD VESSELS, THE NERVOUS SYSTEM and ORGANS SUCH AS KIDNEYS, LIVER, LUNGS, THYROID AND PANCREAS. It can also affect our JOINS AND MUSCLES causing MUSCLE AND JOINT PAIN ( FIBERMYALGIA).




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