Teri

I have Sjogren's syndrome and am concerned about how it has progressed over the past 3 years. I was diagnosed with it after battling an infectionwhich was not properly diagnosed and treated for 8 months. The infection nearly killed me and sometimes I wish it had. The first Rheumatologist treated the Sjogren's with Plaquinel which is indeed the preferred treatment of choice. Just as I reached the 8th week of treatment with the Plaquinel, when the medication reaches it's peak in the bloodstream, I ended up in the hospital with seizures which is a rare adverse effect of the medicine. The Rheumatologist then told me that there was no other treatment for the Sjogren's. The arogance of this man was typical of the kind of treatment I had received when I was seeking treatment for the CA MRSA infection for an entire 8 months. I have since found a fairly decent Rheumatologist who is treating the Sjogren's with immunosurpressants,steroids (during flair ups), saliva enhancing medication, and a pain medicine called Lyrica. The Lyrica has a side effect of weight gain and I have gained 30 lbs. in one year. This is the heaviest I have ever been in my entire adult life. It is a different kind of weight as it is a bloated abdominal type of weight. This only adds th the joint pain and back and neck pain. There are days when I can hardly walk. I find sitting on a heating pad helps releive the pain somewhat. I often cry for days at a time. I do not recognize myself in the mirror and do not like going out in public. The doctor  cannot possibly understand how overwhelmed I am with the progression, pain,and emotional greif living with the disfigurment of my body from the Sjogren's has caused me. I am not accepting what this disease is doing to me. As  I stated earlier, I often wish I had died of the deadly infection that seems to  have brought on the extremly advanced case of sjogren's syndrome.  
man7fred man7fred
61-65
3 Responses Jul 31, 2010

I hope for your sake that the sjogrens goes into remission soon. I have felt the same way. I strongly recommend finding a local Kangen Water distributor and giving it a try. It has been so beneficial to me. My glands are not as swollen, and although my spleen is still enlarged, it does not hurt anymore. My joints have finally stopped throbbing too. I have had the worst joint pain, felt almost crippled. Also lost some of the excess weight. Going to the local pool 2 times a week also had a huge impact on getting my joints back to normal. It was hard at first, I was always sooo tired, but I forced myself, and after a few months, I felt so much better. Good luck to you.

Sorry to hear this. Ihope you feel better soon.

I am so sorry that you have been so adversely affected by this disease. You certainly seem to have a very severe case of it. I hope you and your doctors can figure out treatments that will help ease your pain.