Sjogren's Syndrome plus more...

BlueMajo · 03-22-2009, 01:23 PM

Well, first of all dear beenthere, a hug for you

Second, even when I dont have Sjogren's (or at least, I havent been diagnosed

) I share with you many symptoms: My eyes are dry as a desert, my mouth, my skin, my nose (so dry that it bleeds)... I suffer of inflammation in my hair follicles which hurts like hell and make me loose my hair... I have fibro, so, I have sleep disorders AND I have hypothyroidism...

SO, I clearly understand your frustatrion and stress...

I would suggest treating symptom by symptom... you know, everything in this life need to be seen little, by little... Take your medicines. Take things that help you thing, by thing... like, drops for dry eyes, spray for dry nose, cream for dry skin, you know what I mean... That might help you with all the stress you feel.

Take care, and come here to find info and chat, that helps a lot too !

Nannygoat · 03-23-2009, 02:10 AM

Hi -

Someone asked if anyone is on Plaquenil for Sjogren's? Yes, I am and I get a lot of relief from it. You know the piece of paper you get from the doctor to take to the front desk? I always look at the bottom to see what the diagnosis is for that day and my doctor uses "Mixed Connective Tissue Disease" and his PA told me that encompasses Fibromyalgia, Sjogren's, Mild Lupus, etc.

Also, this is funny and good news for folks who are applying for social security disabiity. In June, 2007 (I think) they accepted Sjogren's as one of the 50 diseases they accept. Wow! I thought to myself, someone on the board must have this or their wife! LOL

tingsdonwrk · 04-15-2009, 04:12 PM

I was told by a Neurologist who kindly phoned after a brain MRI and a brin stem MRI IT ISNOT IN YOUR HEAD!!! It is in your Brain...mine is antrophing and I have many (lie a Christmas tree he said White lesions in the nerves...All He says could be the sjogrens. causing major MAJOR CNS problems...

So as I strugle along like the turtle against the Hare(life) I know that there is a REASON that I feel so bad.

Big Huggles and I pray you too find all the reasons you need!

cyclelops · 05-20-2009, 07:19 PM

I have a diagnosis of Sjogrens, but my blood is negative. My MSG is loaded with lymphocytes...too many to count. My ANA is >1:1280, as the machine didn't go higher. I have also been diagnosed with Mixed Connective Tissue Disease, and it has a specific blood marker RNP, and it is a separate autoimmune disease, not a mixture of a lot of them, altho the symptoms are mixed, as they are for all autoimmune disease. I do not meet the cut off for MCTD however, it is the highest of the different blood markers.

Undifferentiated Connective Tissue Disorder is when several diseases are present but none of them actually meet all of the criteria. That is probably the most accurate descriptions of what I have, but not all that helpful.

Hematologically, now I look like I have Lupus, with a high ANA and low complement C3. And of course, I had Lyme 15 years ago, and have many symptoms of Sarcoidosis. Gosh, who knows??!!

It is very hard to sort out these diseases unless you have the blood work that the rheumies want....however, many of the treatments are the same. I agree with the gentleman who says you have to try what you feel you can risk, and see what works.

I do have the crushing fatigue which really takes away your will to live. If not for a wonderful family and beautiful granddaughter who is the light of my life, I would chuck it. I can't do a thing I used to do. Obviously, the ANA shows major inflammation, and I am sore all over. Eyes and mouth are dry but the pain and stiffness with the fatigue is the worst. I do try to do things, and it always causes me to suffer beyond what is reasonable.

I feel for any one with these autoimmune diseases. There is some research out there to indicate that they could be caused by micro-organisms.

All I can offer you is empathy and understanding.
Wishing every one healing, or maybe just one good nights sleep.

hloutos · 06-04-2009, 03:26 PM

f 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 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?[/QUOTE]

My mother suffers from the same horrible symptoms u describe. She says sadly that she feels her life is over. OMG what a thing to say, but the constant burning in most of her body has robbed her of the quality of day to day living. I and the rest of our family are very upset and very depressed about all of this. Is there any hope? Anyone out there with ANY suggestions? Please it really is a matter of life or death. Thanx!

geemarie · 07-26-2009, 08:06 PM

Quote:

Originally Posted by beenthere

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?

I just wanted to say, I understand. Mine started a little earlier at age 44. One day I was fine, the next day I was ill and I have been ill ever since. It took along time to accept the fact that I would be ill for the rest of my life. Treatments for Autoimmune illnesses have left me with Diabetes as well. I no longer use any treatments that have severe side affects. I do use pain med when I have to and I practice relaxation. I also am a much more spiritual person than I used to be. I rely on God. There is a saying.."Life is about how you handle Plan B". Well, this is Plan "B". We can embrace life or just stop living. I don't believe that medical science really knows or understands our illnesses; much more research has to be done. I do not believe after this amount of time for me that I will get any better. I have to accept that and get on with the life I have. It is soooo hard. I am so sorry that you have so many problems. I hope that my experiences can help you in someway. I send you a hug.

Tiger · 09-22-2009, 11:42 AM

Quote:

Originally Posted by beenthere

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?

Wow since it has been about a year since your post you may never see this. I feel compelled to respond as you are the only person I have ever heard of that has my same 3 main neuro problems. I also have High BP (controlled) and had to have a cardiac ablation and I have Mitro Valve Prolapse. I am probably headed toward my family's tendency of Type II Diabetees. However, the things that cause me the most problems are the neuro/autoimmune ones. I was diagnosed with Fibro about 10 - 12 years ago and Sjogren's 3 years ago. Sleep Apnea (yes - no -yes diagnoses) now with CPAP nightly. I have wondered if I really have Fibro or if it is Sjogren's only. How would you ever know and frankly I'm not sure there is a doctor that would. Anyone know of any good Rheumos in Alabama area? My meds are Zoloft 50 - Fibro, Atacand 16 - BP, Synthroid - minor thyroid level problems, Klonopin 1 - sleep fidgets.

jccgf · 09-22-2009, 02:00 PM

Quote:

Anyone have any ideas?

The original post is almost a year old, but for anyone still interested in other ideas.....

If you have not been screened for gluten sensitivity, you should be!! Your medical problems scream potential for gluten sensitivity. The tests you need to request are antigliadin IgA, IgG. Just be sure they do not substitute a newer similar test, called anti-deamidated gliadin.

Gluten sensitivity is common in many autoimmune diseases... and may be the underlying problem for some with Sjogren's and/or fibromyalgia.
http://jccglutenfree.googlepages.com...oimmunedisease
http://jccglutenfree.googlepages.com...atiguesyndrome

In fact, one person who used to post as debinaz at BrainTalk years ago completely reversed her Sjorgren's disease by removing gluten, casein and soy from her diet... ANA antibodies back to zero, symptoms gone. Her doctor was impressed, and now screens all of his Sjogren's patients for gluten sensitivity and recommends a gluten free diet for those who are postive.

Quote:

I have outbreaks of blisters on my skin that sting and bleed.

Gluten sensitivity is also associated with several skin disorders, one of which is a blistering rash called dermatitis herpetiformis. Has your dermatologist done a skin biopsy of the surrounding tissue to rule this out?

eMedicine on Dermatitis Herpetiformis

Celiac Sprue Association on Dermatitis Herpetiformis

University of Iowa DH photo gallery

Also, gluten sensitivity is more common in those who have other autoimmune disease, especially autoimmune thyroid disease and type 1 diabetes.
http://jccglutenfree.googlepages.com...thyroiddisease

With all of these risk factors, it is definitely something worth considering. There is more information on diagnostics and other information in The Gluten File. You can scan the right bar from the homepage for topics of interest.
http://jccglutenfree.googlepages.com/home

You mentioned many other symptoms that are common in celiac disease/ gluten sensitivity... and please be sure that your B12 level is upper range. A lot of symptoms you mention are symptoms I had with a B12 deficiency.
http://jccglutenfree.googlepages.com...ciencysymptoms

Doctors often miss this, think low normal B12 levels are ok, etc. B12 deficiency is common, especially in those with autoimmune disease. This can all go together... and frequently does.

Tests for B12 deficiency:
B12 level
homocysteine
methylmalonic acid

cyclelops · 10-21-2009, 02:03 PM

If you take standard psych testing when you are physically ill, it will show somatoform disorder. Psych testing works on well people to some extent. I imagine some pain clinic or IME got you into the psych testing realm. When you answer the questions about symptoms, 'My neck hurts', etc. positively, it will skew your test to 'being somatoform'.

Now, since you have Sjogrens.....it DOES come with neuropathy and potential encephalopathy. Like Lupus, it can produce psychiatric problems via inflammation or vasculitis.

And they won't find that on MMPI (type of psych test)

cyclelops · 01-28-2010, 01:55 PM

I am going to bring this thread back to the foreground again. I have been in another forum for Sjogren's and I want to make things clear.

There is Sicca and Sjogren's.

Many, many drugs cause sicca. Dry mouth, dry eyes.

Among them are antidepressants, all of them. Benzodiazepines (during withdrawal too) , z drugs, antiparkinsonian drugs, diuretics, opiates.

If you are on these drugs, have negative blood work such as a normal ANA, normal ENA, and a lip biopsy is negative...look at the drugs. They should look at drugs FIRST before they do tests. It is easier to go off these drugs and see if things improve, than to go thru all that testing and have it come back negative.

Not all sicca is Sjogren's. Not all Sicca is inflammatory. Not all fatigue is autoimmune.

Many diseases come with sicca because sicca can be neurological as well as inflammatory.

When people seek to label their sicca as Sjogren's they do themselves a disfavor. They may not find out what the cause of the sicca is. I would hate to mistake SjS for amyloidosis!

I know what it is like to be anxious for a diagnosis, but, to be accurate, is what is most important.

Sicca is NOT Sjogren's. Primary SjS is worse than secondary SjS and the term secondary SjS should be dropped unless the blood work is +, because, all autoimmune disease can produce Sicca. Sicca is part of RA, Lupus etc. People with autoimmune disease already have the aching, the fatigue etc that come with any AI disease.

Primary SjS can make people very, very sick. Sicca is uncomfortable but not life threatening. Primary SjS can be.

Rheumatology needs to decide what is what....they have tried to classify autoimmune disease by the ENA, when it should simply be the ANA being +. They need to realize that many of the ENA do not define the disease. Only a certain percentage of people have the 'correct' antibody for their disease. However, at least elevated ANA, low complements, high sed rates, high CRP, thrombocytosis indicates inflammation. Without these markers, it is hard to assign sicca to an inflammatory cause.

Lip biopsies can show inflammation but it is not always SjS.

SjS diagnosis is a mess.

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