New to the Boards..A question on Sjogren's??

 

Hello to all, and thank you in advance for your comments/suggestions.

I was diagnosed with Sjogren's 2 years ago after a range of symptoms including abnormal bruising, extreme fatigue, joint pain (rapidly spreading) enlarged lymph nodes, gall stones, a kidney stone, and Raynaud's. (I still have negative ANA's for everything, I was diagnosed after a trip to the optomitrist. I am only 25, but I am sure I do have something autoimmune as my 5 year old has autoimmune arthritis as well as vitiligo on her leg.

I am wondering if anyone has any suggestions as far as increased eye dryness? It is driving me crazy, and wakes me up a few times a night. Contacts are now out of the question. I feel like I am speding hundreds on eye drops (ususally optive, blink, and some pm ointment) I also have the eye plugs in my tear ducts, and I am still miserable. Any suggestions?

Also, I have terrible raynauds. I have constant cold toes that are not warmed up by anything! I have tried heated socks, layers of socks, and sticking them in hot water is great until I have to take them out again. Less often, however, my toes go completely numb.

I was also recently diagnosed with Obstructive Sleep Apena. I am 5'9 and under 140, so definitely not over weight by any means, and I am very physically active, and sleep on my side. Is there any connection between autoimmune disorders and OSA?

There is also a possibility I might have Lupus, though I am not sure what I have to have since all my blood tests are negative, to show that I might have it as well as Sjogrens?

Sorry for the long random post, I almost don't want to go to the doctor because I am afraid of what else I will be diagnosed with. It all seems so crazy! Thank you for taking the time to read this. Sometimes I feel so lost, and crazy. I think for the longest time everyone thought I was a hypochondriac. The apnea diagnosis finally has shed some light on my fatigue issue. (I needed 17 hours of sleep a day to function) It is nice to find a place where people might actually understand some of these issues!

 

Welcome to the board!

Sometimes when these types of diseases start out it takes a while for the bloodwork to come out positive. My ANA's, etc. did not show up for years, then a little, now a lot. Honestly, I think I have had this disease for about 20 years, the last 10 were tough. I just got diagnosed in 2005 and rediagnosed again this past month. My daughter has Lupus but her boodwork is negative still even though she meets criteria for Lupus. These are all odd diseases in the way they present themselves. There are primary and secondary diseases, overlaps, and it hard to tell exactly the type of disease. They are all about the same in my book as they all hit various areas of the body and have similiar symptoms. I do not have Sjogren's but I have had dry eyes and mouth years ago for about 2 years. I also have had some symptoms of Scleroderma for 1 year. My primary diagnosis is CNS Lupus but it has now started in my organs. As you can see, there is no rhyme or reason to this. That alone makes you feel crazy. Along with having symptoms that not many people will ever experience. It took me a long time to realize I was not a hypochondriac and that my illnesses were real, progressing and had a pattern to them. It is like a puzzle and can be very painful and frustrating at times. This group has helped immensely. More than words can say.

I hope you are able to find a group (hopefully ours) that you can find the support you need. Don't worry if this group doesn't fit completely. I was in a Scleroderma and Cadasil group prior to finding out I had Lupus. They lead me to this one and I learned a lot about my disease as well as theirs. The different ideas I learned helps me and others. It is a long journey. I wish you the best in finding out the cause of your symptoms - Kristin

Crmomo,

Welcome to the forum. Des and Kris have both given you good advice and I too hope you'll hang out here with us. I too have sjogren's but it's beyond me which of my symptoms are caused by which disease. My main concern is whether or not I'm on the best regimen of meds to control what I have.

You don't mention whether or not you take plaquenil or anything else for your sjogren's and reynauds. I understand your fear of going to the doctor but if you do go to a good rheumy they may be able to help you and answer the questions you posed here. I have reynaud's but it's very mild so I've not had to deal with the discomfort you describe. Maybe others here will be able to give you some suggestions.

I can, however, offer you my support because I so understand what you're going through. I remember that after being examined by my rheumy a couple of years ago I overheard her tell her nurse, "I don't know whether she has lupus or rheumatoid arthritis or both." It's so hard for the doctors to distinguish between these diseases too.

If you do go to your doctor, be sure to be armed with a written list of any and every symptom you have or have had, in addition to a list of any and all questions you have. A good doctor, in my opinion, will listen and spend time helping you not just get a diagnosis, but understand what's going on with your body.

I'm glad you're here.

Pat

Crmomo--
I understand how you feel. I am dx with a sjogrens-like, lupus-like condition resulting from a past liver disease they thought was hepc and now maybe NASH, don't know. Anyway, I have vit over 50% of my body and severe osteoarthritis. I have struggled with repigmenting and have learned that vitiligo needs to be repigmented with protopic asap as my old stuff 13 years old would not repig but my new stuff will, though the protopic seemed to cause more new spots. oh well. Anyway, on the eye stuff. I take a pill called evoxac that is to increase saliva but also adds moisture to your eyes and to your gi tract a little. It gives me enough to sleep. Also, when things are very bad, I use overthecounter gel or if real bad, overthecounter ointment, often with drops to soften the ointment a little. I am participating in a study on vitiligo for Dr. Richard Spritz and if you would be interested in having your daughter be a part, let me know. They are doing DNA samples and looking at some blood work and stuff, and will let me know if they find anything else of medical importance. It is important for people with vitiligo or a tendency to it to avoid phenols, present in hair dyes, some perfumes and other stuff. This will trigger vitiligo in people who do not have it yet or cause new spots. I am so sorry you and your daughter are going through this. I also have a son with multiple medical problems, heart epilepsy, and now bone density issues and ADHD and I still can't get him properly tested for ai disease or sent to a rheumie even once, though he does get raynauds occasionally. It is frustrating to know you are sick, but to not get the docs to get going on it, espeically when you have children. I do not have any antibodies, no SSA, SSB, antidsdna or anything when they last tested, just high ana at times and specific antibodies to organs. My disease is considered secondary, caused by some other disease I have, probably my liver disease. Getting your liver levels tested and thyroid antibodies (esp. TPOs in you and your daughter is important, many people with normal TSH--thyroid levels have extremely high antibodies to their thyroid and are infact very sick, but their pituitary is affected too so it doesn't show up). These things are important to check out. I'm glad you found this forum and I hope you and your daughter are doing well and getting good care. I look forward to hearing from you again!

Razzle,

I was thinking today about your post, and I constantly get clogged ear like feeling. I know that zyrtec helps, so maybe I do have some kind of allergies?

Hi Marji . . . I have talked to several people who REALLY like the ear candling . . . I too purchased the candles, but haven't used them. I had really hoped to nail down DH and try it on HIS ears LOL!! Blessings!