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

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crmomo
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/19/2007 6:02 AM (GMT -7)   
 
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!
 
 
 
 
 

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/19/2007 7:47 AM (GMT -7)   
Hi crmomo,

Welcome :-) You have joined a great group of very caring people. Many of us have Sjogren's with our Lupus.

I have what my doctor believes is Lupus/Sjogren's overlap although we are still calling it UCTD. I too have dry eyes which are terrible at times. I don't believe though that mine are as dry as yours. I get by with GenTeal ointment at night and occaisional rewetting drops during the day. I know there are something like a gel ball thing that you can put in your lower lid which dissolves throughout the day (I forgot the name of it) and I hear it helps for some but not for others.

I understand the fear of going to the doctor to hear what you may not want to hear but its important. You need to figure out how to fix the problem so you don't have to suffer as much as you do. I do know of a forum that is strictly a Sjogren's forum so please let me know if you would like the name of it. I used to visit it also and there are some very good knowledgable people there as well. Please know that we are here for you.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 9/19/2007 8:39 AM (GMT -7)   
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
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/19/2007 8:56 AM (GMT -7)   
I agree... definitely stick with us. I just mentioned the other site as an addition.  I think the best thing to be here as you are going through your diagnosis. You will definitely get to see the Lupus side of things and I think you will be amazed how much Lupus and Sjogren's are alike. I often wonder how many people who are on the fence with both disorders get classified into one or the other, that is the biggest hurdle with my individual case. So many of the symtpoms can go either way. Frustrating, I tell ya :-)


"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate

Post Edited (dbab) : 9/19/2007 10:14:19 AM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/19/2007 9:15 AM (GMT -7)   
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
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


crmomo
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/19/2007 9:41 AM (GMT -7)   

The posts brought a tear to my eye! Lol. it feels like "OH you do understand, dont you?!"

Such an amazing feeling when it is so impossible for family and friends to grasp sometimes. I am on Plaquenil and Mobic, and only have to take a Prednisone pack when I have a flare.  The Plaquenil manages my arthritis wonderfully. I was on Methotrexate when I first started showing the signs of Arthritis because of how rapidly it was spreading.  I have really gotten most of my illness under control as far as the day to day nusciences, and I believe that once I start my CPAP machine for my apnea, my quality of life will improve immensely!

I have had a hard time coming to grips with the fact that I have to take care of my body now. I no longer drink, I exercise regularly and eat extremely healthy. Actually, besides the couple of issues I first mentioned, I am actually doing well, and much much happier just having a diagnosis of some sort. Makes me feel less crazy.

Thank you all again for your replies, they really made my day, and I look foward to chatting/posting with you all!!

 

I ffel like I am home!! lol yeah


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/19/2007 11:28 AM (GMT -7)   
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!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 9/19/2007 4:13 PM (GMT -7)   
Hi,

Have you been tested for allergies? I find my eyes feel a lot dryer when I'm dealing with allergies. Good luck & take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


crmomo
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/20/2007 7:32 AM (GMT -7)   

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?


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/21/2007 8:20 PM (GMT -7)   
crmomo--
I get that clogged ear feeling and my ENT told me its because of Q-tips (I hate the feeling of wet ears) and he said that using them packs the wax in. Stopping using them usually clears it up, it does for me but I still break down and use them at times. Anyway, I also got something at the healthfood store called an Ear Candle, well two, one for each ear. They are supposed to really really clear out all the wax out of your ears really really well. So I'm scared to have my bf doing it. I can just imagine him setting my hair on fire, but you might want to look into that. The guy at the health food store said he could believe how much crap came out and how well it worked compared to an ear syringe. I hope you feel better.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/21/2007 8:33 PM (GMT -7)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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