Sjogrens Disease

[Joda]

Hi, I am new to this site and I was hoping to get some feedback! I tend to worry alot and it is taking me over right now.
I have a 7 month old baby and I am currently staying home with him right now. For the past 3 months I have not been feeling very well. I started to feel like my head was being squeezed and that there was constant pressure. That has since improved itself a bit. My Dr was unsure of what it was. He did blood work and I also had a CT scan done and all came back fine. The pressure in my head has improved yet I am still feeling ill.
I was diagnosed with Sjogrens a few years ago and along with that I have small vessel vasculitis and reynolds phenomenom. The past week I have started to expierierence dry mouth and eyes a bit.
I have been doing some research on sjogrens and I have learned alot about it but I feel like I have also freaked myself out as well.
My neck and shoulders have been really sore and my throat as well. Sometimes I feel like I am going to have difficulty swallowing. I find that I am always tense all the time, as well I am exhausted as well. I feel like I could sleep all the time (which is not like me at all) I slept the other night for almost 10 hrs and I was still tired all day.
I was feeling around on my neck cause it has been sore and my husband says that what I feel are just knots but of course I think that they are lymph nodes. How do you tell if they are swollen or abnormal? I know that having sjogrens affect the white blood cells but how can you tell when it's bad?
Please give me some insight into this! I am driving myself crazy and my husband. By they way I am 26 years old

[kdlee]

I have had Sjorgens for past 15 years..I am 56 yrs old..I have severe dry eyes and mouth..My throat gets raw and at times I cough due to this dry/rawness..It is imperative to sip allot of water and should you use hard candies please besure to do sugar free..Your teeth may develop problems due to the dryness..I have found that OTC eye ointments helps tremendously for sleep at night..My eyes get so dry that the lids will stick to my eyeballs and cause painful sores so I have to watch that this doesn't happen too often as it could cause me to need a corneal transplant..I tried many eye drops and perscription meds such as Restasis that have not worked for me..
I have Hashimotos also and had Thyroid removed due to a mass found VIA CT scan that was done for disc disease..I do keep tabs with doc for possible problems that can occur..I have Fibro., osteo,  Raynauds..I have the fibro fog, pain and skin dryness..I hurt to light touch, air, cold and heat..
(If) ever in doubt be sure to check with your doctor..I am at a point that my PCP, Pain doctor and Rheumatologist are unsure and unclear what direction to take with me..When I take meds it seems to explode fast in my stomach and -no- I do not have an ulcer..I begin to throw up violently so many many many meds have been tried and put aside..
I also have a nothing bump that is at the back of my neck..It swells so bad at times I feel like I have a 3rd elbow..It is painfuL AND I AM TOLD IT IS REALLY NOTHING..HMMM.We all have a similar pciture..

Autoimmune is a horrible condition and there is little udnerstood about it..My entire family is affected and my mom passed away with Autoimmune:Cirrhosis of ther Liver, Sjorgens, Fibro, diabetes, Lupus..

I am a firm believer in Fighting so no matter what do not give up..What works for one maynot for you but keep trying..This is why I joined this site--More research--never know what someone may add that will help..

KD Lee

[Anne1212]

10/17/08 - Get your thyroid checked.  Hashimoto thyroidistis goes along with sjogren's.  Fatigue and achiness are symtoms of hypothyroidism.  I became hypothyroid after the birth of my daughter and was later diagnosed with sjogren's.  Other symptoms of thyroid disease are coldness, dry skin and hair, weight gain or difficulty losing weight, depression, and forgetfulness/memory problems.  Note, I was misdiagnosed with depression, stress and overwork.  My doctor said I didn't have thyroid disease because my bloodwork from a month before was normal.  He put me on anti-depressants (lexapro).  Boy, that was a big mistake.  Thyroid levels can change really fast.  My TSH was a 64 by the time I was properly diagnosed 7 months later by my gyno (normal is between 1 and 3).  I could have died and/or lost my job because of  my (former) doctor's arrogance.  I told him there was something wrong with my thyroid.  He would not believe me...would not run a second simple blood test and never tested me for anti-thyroid antibodies.  I also gained 25 pounds as a result of hypothyroid and misperscribed antidepressants...that added insult to injury!

Good luck.  Get your TSH and anti-thyroid antibodies checked.  If not that, sjogren's makes you feel crappy sometimes.  I'm trying to figure out how to live with it.  It is depressing...but could be worse!

Anne

[Patti777]

Wow.  I could have written your post about 10 years ago except for the baby.  I was diagnosed with primary Sjogren's Syndrome several years ago.  One of the many symptoms that make us this syndrome is Fibromyalgia.  It causes muscle aches and pains, fatigue, and depression.  In addition to the dry eyes and dry mouth, many of us have digestive issues, arthritis (similar to rheumatoid but not as desructive) and vascular headaches.  Because Sjogren's sufferers are more likely than the normal population to get non-hodgkins lymphoma, you have good reason to be concerned about swollen glands and if any remain for longer than a week or two, please have them checked.  The good news is that Sjogren's has not been progressive with me.  I have flares that seem to be related to overexposure to sunlight, stress, or over exertion,  followed by periods of feeling fairly well.  Daily, I use Restasis for my eyes, take Protonix for my stomach, Plaquenil and Diclofenac for systemic symptoms.  I also use a multivitamin and a B supplement for energy.  There are some great new lubricants for down below that your husband will enjoy, too.

I walk three days a week for exercise and that helps with the stiffness in my knees and hips.  I stretch for about 10 minutes when I first get out of bed.  I wait for everyone the clear the movie theater so I can stretch before I walk out.  I stretch my neck several times a day because it gets so stiff that I can't turn it enough to drive myself.  I'm only 55 and I can't give up my freedom.

I have a swelling on the left side of my neck near the clavical bone that I call "my nothing" because after two specialists examined it and the ultrasound of it, they determined that it was nothing.  It swells so large when I spend too much time in the sun that it is difficult to turn my head left without discomfort and y husband will notice that "your nothing is really big."  He says that when they finally figure out what it is , he's going to sue the doctors who called it nothing.  But that's another story.  

I hope this helps you to cope.  I hope that you find that Sjogren's is a manageable problem and that you live a long and happy life with your family.  Love!

[hey3]

Did they diagnose you from blood work or both blood work and symptoms? I just recently had the sed. rate, crp, ANA, and thyroid studies done. I went to consult for lasik surgery after having some problems wearing contacts. Guess what, the opthomologist thought more than likely I have RA, SLE, or sjogorens. I did some internet research myself. I forget that difficulty swallowing was one of the s/s. I have on occasion. My eyes are severely dry. So dry that I have corneal scratching preventing me from having lasik. Poor quality tears, the eye lids literally scratch the corneas. I started taking Theratears, flax seed/fish oils. I can't tell if it has helped. I also did the suggested cool mist humidifier to help. Have you found anything to help with the dry symptoms. From my research sjorgens syndrome can be found in RA as well as SLE patients. It kind of goes with the territory. Have you seen a rhematologist yet? Usually these docs are the one that treats this disease or syndrome. I also have reynolds type symptoms. Hands get freezing cold but they never to the red thing. Usually hands turn from white to blue but never to red.
I hope you start feeling better.
Share with me anything you have found to help.
hey3

[PlateletGal]

I've heard many people with autoimmune and/or other conditions who have said they have had difficulty swallowing. All I can say to you is you might want to check out the Marshall Protocol. I know another member on the protocol who has Sjogren's and CFS and she is doing so much better. As you know with these autoimmune conditions, you often get symptoms of other autoimmune diseases. The Marshall Protocol is a research protocol that has been helping people with autoimmune conditions and their success stories are on their website. The medications they use are not research medications. If you google "Marshall Protocol", you will find their website. You may also want to google, "bacterality.com" and find Amy Proal's website.

All the best,

PlateletGal