Sjogren's Syndrome.... I need your help with treatment and Pain Management

lacheney - It would be interesting to know the doctor's source for that information. Multiple sources, including Mayo Clinic, state that scientists really don't know why some people develop Sjogren's syndrome and others don't. It's believed that certain genes may put people at higher risk for this, but that there also needs to be a triggering mechanism, such as an infection with a particular virus or bacteria.

I recently went to the Rhematologist and was diagnosed with Sjorgens and Rhematoid. He told me that I needed to have a permanent form of birth control because Sjorgens is 100% passed on to the baby. I had a hysterectomy so that was not an issue for me but what about these younger girls who are child bearing years are they being told this as well. I think that this is a significant thing for people to be aware of. There could be children walking around for years with this before it surfaces and then if they have children it goes on and on. This is a serious issue. You should all talk to your Rheumatologist about this and get their imput if you are still able to have children. Just because one Doctor says it does not make it so but he must have gotten the information some where so it warrants closer investigation.

I was the one that wrote April 26, 2009....lost a kidney. I quit the plaquenil. I was having vision problems and had severe abdominal pain. I thought since last time was 6 months, I could afford to try stopping it. Well my legs were in horrible pain and BP up and couldn't sleep.

I reached a point where a neighbor suggested magnesium. The 500 mg magnesium / 3 times a day did wonders. Because I was really worried about needing crutches to walk and the pain at night was terrible. Well then I added Vitamin C / 1000 mg - 4 times a day.

And recently researched vitamin D. Added D. Research suggests low levels of Vitamin D correlate with autoimmune disease as well as, high blood pressure & muscle and bone pain. I am very much improved over the 6 weeks. I added One a Day over 50+ multi vitamin.

I also started drinking milk in the morning and at night.

OH and gave up coffee. Well almost entirely lol. I have coffee Wednesday morning. But my blood pressure has dropped.

I am 23 years old and have been dealing with sjogrens syndrome my entire life however I have been only recently diagnosed with it. I suffer from really intensive bodily pain however I never take anything for it. One doctor wanted to give me steroid shots to help the various joints causing me pain however I refused because steroid shots have given me fat atrophy. One doctor said that the fat atrophy was due to the steroids combined with my disease however I know steroid shots in generally can cause them.

I have a very high pain tolerance because of dealing with horrible pain my whole life. I am looking into more natural medicines to help me currently. I wish all of you dealing with this my love and courage to make it through this.

I was misdiagnosed as having MS for 19 years - now we believe I have Sjogrens. My doc thinks my whole body pain is not common to Sjogrens patients but web info tells me otherwise. I feel pain deep in my bones. It began 3 years ago in my left thigh bone. The biggest bones hurt the worst. I am on morphine 24/7. Cold murders me. At night I wrap my legs in an electric blanket and that helps a lot. Biofreeze helps my back pain but not leg pain. My fatigue is MUCH improved since taking hydrochloroquine sulfate.

Tina, your story is heartbreaking. You are such a strong and courageous woman -- I can tell, because you're taking care of your grandchildren, battling your illnesses, dealing with a lack of insurance and still finding time to come here and tell your story.

Can we help support you in any way? Do you need help finding medical care without insurance in Columbia?