Sjogren's Syndrome plus more...
 

Hi everyone, I'm 50 yrs old and have lived a full life with children, hubby and lots of work and family fun. I expected to live the rest of my life the same way, but I've been diagnosed with Sjogren's Syndrome - Primary. The Primary means that Lupus is not included in it (yet), but then why did the rheumy provide me with both pamphlets??? Anyway, I'm on medication for the Sjogrens. It is an autoimmune disease where your own body attacks it's mucus membranes and dries them up along with other organs such as your kidneys, heart and lungs. Sjogrens also causes "chronic fatigue along with extreme vaginal, eye and mouth dryness along with tooth decay because my gums are so dry and it causes acidic bacteria. An ANA Test decides this. I have a dry mouth all the time unless I take "Salagen" for it every few hours. I have a high amount of inflammation in my liver and kidneys and have to watch what I eat. I am on med for burning pain in my body and something for muscle spasms. I also have fibromyalgia which is complicating things along with Sleep Apnea and my SED rate is high (that's short for inflammation inside your entire body)! I've been like this since 2003. The Salagen causes problems with my eye sight and so does the pain med. The pain med causes dizziness and nausea, but does reduce my pain so I'm not in so much pain. I'm not hungry but I'm gaining weight!! I don't go one day without feeling dry, tightness in my muscles, pain in most of my body, and stiffness and pain in my joints along with sleepiness, but I can't sleep at night! Now after mental testing they've diagnosed me with Schzieoaffective Disorder (in other words they think a lot of my pain is in my head!), Undifferentiated Somatoform Disorder and Cognitive Disorder - Subtle (which means I'm in a low profile of those with a Cognitive Disorder). I have had sciatica pain since having a neuro testing done for nerve pain over six months ago. I'm having trouble walking, bending over and standing back up and using my arms to lift, open jars, bottles etc. I have no strength in my body to do much of anything and I used to do Swedish Massage before I got sick! I'm also on Thyroid medication for low thyroid but it's normal now. I have outbreaks of blisters on my skin that sting and bleed. I have "visions" which the doctors are calling psychotic episodes...then how come most of them come true? And now I have a very high level of emotional stress that is causing anxiety attacks. My doctor says we can keep going up on the pain meds...but then the side affects get worse and when I try to back off of them my pain gets worse. I can't think most days I'm in "Brain Fog" and I want my old self back!! I feel like I'm slowly dying. I'm in bed a lot of my days, I try to do household things but my energy level is so low, they call it "chronic fatigue". Some days I can't keep my eyes open even though I want to stay awake. And I'm getting very angry now after all this time. I've tried to be patient, most days just trying to do what I can, then I have days like today when I get angry and impatient...I ask God "how much longer Lord?" I've had MRI's of my brain and EEG along with numerous other tests and everything looks okay says the neuro doc. I've had MRI of my hypocampus and all looks good. I have arthritis in my C-6 (neck) and my L-5 (lower back). But nobody is treating me for these except the pain meds. I have a life but can't function in it! Anyone have any ideas?

Hi BeenThere! Welcome to NeuroTalk.

Sorry for all your health problems. I don't have any answers for you, but wanted to leave you a hug. :hug:

I hope you get some good input that will help you.

candida is worth looking into for any autoimmune disease. There is an intersting artical on lymenet.org

http://flash.lymenet.org/ubb/ultimat...c;f=1;t=068288

sympathy
 

I don't have too much to offer but want to sympathize with what you are going through. I too have Sjogren's and other issues and when the dr's don't know what is going on, they imply it is anxiety or in your head.... It doesn't help to have stressful physical issues and then start to wonder if you are crazy too! Best of luck to you.

There actually IS a common thread running through all your symptoms--inflammation. It is a shame that the doctors separate out "psychiatric" from all the rest of your problems since in my experience it is often the same underlying cause. Fix what is wrong to begin with. People with pituitary problems often are told they have "mental illness" for sometimes a decade before a proper diagnosis. The longer the stress of the underlying initial problem goes untreated, the more likely the brain is affected as well.

I agree with looking into Candida. I would add looking into the gluten connection.

I know the site is about children, but the list of resources (look for the link) on It's Not Mental (http://www.itsnotmental.com) may be of some benefit as it has a list of testing sites and articles on the connection between inflammation, stress, autimmune and brain problems.

In the meantime, I want to say I completely understand your frustration because I have both a female friend with your problems, as well as a family member with a subset of them. My female friend is thinking of joining a study being conducted by NIMH on treatment of Sjorgen's syndrome.

look at this...
 

I also agree, inflammation can cause problems with the nervous system, see this article: http://www.sjogrensworld.org/mandel.htm

I too suffer from neurological complications caused by Sjogren's Syndrome. I also have rheumatoid arthritis. I can sympathize with all your issues. Also might want to look at the forum at that same site.

Billye

I also have Sjogren's Syndrome
 

I was diagnosed a few months ago. I to have Sjogren’s Syndrome. I accidently found this web site and I’m in hopes to find someone that can help me make sense of all of this. I just finished reading beenthere’s story and I can honestly say not only been there but I’m still there. I never discuss my situation with anyone, I feel like they all think that I’m crazy. I’m so tired all the time I have become very angry. I have had people tell me that it’s all in my head and that doctors are just telling me that I have Sjogren’s so that I will shut up. They claim that it is not a real disease. I would have attacks off and on (about every three months) they would last about a week and a half. They passed me from doctor to doctor and my tests all came back fine. I checked into the ER on three different occasions and finally after my husband stood there yelling that something was wrong they began to run more tests. I have not even had a cold in 20 years. They finally found that my inflammation levels in my body were extremely high. All that I could tell them was “ I hurt” first I would say its over here (maybe point to my right side) then I would say it was over here (point to my left side) I had no idea that it was inflammation and really could not explain well enough to the doctor for them to understand. The last episode lasted for approximately two and a half months, Only my family members knew, I would continue to try and make it all day at work, I also have bouts of Brain Fog, Short term memory loss, nausea, extreme pain, lower back and sciatic nerve problems. I am now seeing a Rheumatologist and he has put me on Plaquinil and prednisone. They say it will be a few months before I notice a difference with the Plaquinil. Is anyone taking Plaquinil or know anything about it. I’m not sick at the moment but I find myself unable to work the way I’m use to. Absolutely no energy and if I do get a little energy and try to even clean my house the way I use to I usually end up paying for it for a few days. Is there anyone out there that can give me some insight on Sjogren’s?

Billye, thank you!! I got a lot out of the web site you listed. I'm getting a new rheumy!! and passing the info on along with printing it for my ref... thanks again. Have a Blessed Day!
Beenthere

My wife has RA and also the Sjogren thing. We fired two rheumies til we found a very compassionate guy that knew what he was doing. I can say that because it worked, but the truth is these docs just try stuff til it works when it comes to these autoimmune diseases. Anyway, my wife is a nurse and didn't want to go to Enbrel type stuff that would shut her immune system down. That other stuff that starts with an M made her real sick. So she was put on Sulfasalazine (sp?) and it worked beautifully! He said it is the most benign drug and is real cheap (why most docs don't use it, IMHO). Everyone is different but it put her RA completely in remission and gave us our life back. SED rate back to normal. It also got rid of her dry mouth symptoms...I guess that's the Sjogren thing. Her RA was caught before serious bone damage and no guarantees that won't happen. But there is nothing worse than watching your spouse suffer. Understand, too, a lot of praying went into it.

[QUOTE=beenthere;391917]Hi everyone, I'm 50 yrs old and have lived a full life with children, hubby and lots of work and family fun. I expected to live the rest of my life the same way, but I've been diagnosed with Sjogren's Syndrome - Primary. The Primary means that Lupus is not included in it (yet), but then why did the rheumy provide me with both pamphlets??? Anyway, I'm on medication for the Sjogrens. It is an autoimmune disease where your own body attacks it's mucus membranes and dries them up along with other organs such as your kidneys, heart and lungs. Sjogrens also causes "chronic fatigue along with extreme vaginal, eye and mouth dryness along with tooth decay because my gums are so dry and it causes acidic bacteria. An ANA Test decides this. I have a dry mouth all the time unless I take "Salagen" for it every few hours. I have a high amount of inflammation in my liver and kidneys and have to watch what I eat. I am on med for burning pain in my body and something for muscle spasms. I also have fibromyalgia which is complicating things along with Sleep Apnea and my SED rate is high (that's short for inflammation inside your entire body)! I've been like this since 2003. The Salagen causes problems with my eye sight and so does the pain med. The pain med causes dizziness and nausea, but does reduce my pain so I'm not in so much pain. I'm not hungry but I'm gaining weight!! I don't go one day without feeling dry, tightness in my muscles, pain in most of my body, and stiffness and pain in my joints along with sleepiness, but I can't sleep at night! Now after mental testing they've diagnosed me with Schzieoaffective Disorder (in other words they think a lot of my pain is in my head!), Undifferentiated Somatoform Disorder and Cognitive Disorder - Subtle (which means I'm in a low profile of those with a Cognitive Disorder). I have had sciatica pain since having a neuro testing done for nerve pain over six months ago. I'm having trouble walking, bending over and standing back up and using my arms to lift, open jars, bottles etc. I have no strength in my body to do much of anything and I used to do Swedish Massage before I got sick! I'm also on Thyroid medication for low thyroid but it's normal now. I have outbreaks of blisters on my skin that sting and bleed. I have "visions" which the doctors are calling psychotic episodes...then how come most of them come true? And now I L-5 (lower back). But nobody is treating