Sjogren's Syndrome plus more...

LindaLu15 · 03-19-2009, 09:50 PM

[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

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.

en bloc · 02-08-2011, 09:17 AM

Beenthere,

I too have been diagnosed with Sjogren's several years ago but have had medical problems for decades. **I'm just new to this forum, not new to this game

**

Are you positive for ANA and SSA or SSB?

Although I'm sero-negative, my lip biopsy was extremely positive. Most of my problems are neuro related and I just found this forum. I wonder sometimes if the Sjogren's really causes the neuro manifestations or if the neuropathy (both AN & PN) cause the sicca...and destruction of the salivary gland. Which came first, the chicken or the egg

It most certainly is NOT in your head. If you do have positive serum markers or + lip biopsy, you might inquire about taking Plaquenil. It more about treating symptomatically for each system affected.

There is much more to be learned about Sjogrens and other AI diseases. They are ALL related in some way.

Hoping you feel better.

SWAlexandria · 07-31-2011, 09:43 PM

I have Hashimoto's Disease and also dry eyes and can't clear the back of my throat. Endocrynologist said it sounds like Sjorgren's but I tested negative for it. However, Sjorgren's takes ON AVERAGE 6 1/2 years to diagnose. I understand that there may be a drug you can take to slow down the progression of Sjorgren's but my Rhematologist won't give it to me as I've tested negative. *edit* I've also contacted a Support Group Leader in my area to see if she might have any valuable information. *edit*

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.

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